Bryce B. Reeve

Journal article Liver Int · September 2026 BACKGROUND AND AIMS: To understand the experience of fatigue and cognitive impairment in adults with symptomatic primary sclerosing cholangitis (PSC) as an essential first step towards developing PSC-specific symptom measures. METHODS: Purposeful sampling ... Full text Link to item Cite

Comparing Patient and Clinician Perceptions of Health-Related Quality of Life in Urinary Tract Infections.

Journal article JAMA Netw Open · July 1, 2026 IMPORTANCE: There is limited research comparing patient- and clinician-reported health-related quality of life (HRQOL) in patients with infections. OBJECTIVE: To compare what patients with complicated urinary tract infections (UTIs) describe about their HR ... Full text Link to item Cite

Self-Reported Adherence to Cancer Therapy: Development and Validation of the Domains of Subjective Extent of Nonadherence-Cancer Measure.

Journal article JCO Oncol Pract · June 2026 PURPOSE: Patients with cancer take different types of medications with varying schedules and settings. They are also sometimes instructed to stop medications due to toxicity. To measure self-reported nonadherence in this heterogeneous population, we modifi ... Full text Link to item Cite

Palliative Care Intervention for Patients With End-Stage Liver Disease: A Cluster Randomized Clinical Trial.

Journal article JAMA Intern Med · June 1, 2026 IMPORTANCE: Palliative care improves quality of life (QoL) in advanced illnesses, but data in end-stage liver disease (ESLD) are limited. It is unknown whether palliative care delivered by hepatologists is effective when compared with palliative care speci ... Full text Link to item Cite

Benefits of Electronic Symptom Monitoring During Cancer Treatment by Age, Sex, Race, and Education (Alliance AFT-39).

Journal article JCO Oncol Pract · May 12, 2026 PURPOSE: Remote symptom monitoring using patient-reported outcomes (PROs) has been shown to improve symptom control and physical function among patients with advanced cancer. However, it is unclear whether these benefits are similar across demographic grou ... Full text Link to item Cite

Frailty phenotype in adults with sickle cell disease.

Journal article J Gerontol A Biol Sci Med Sci · May 7, 2026 BACKGROUND: People with sickle cell disease (SCD) are at risk for accelerated biological aging and functional decline due to both age and SCD-related stressors. Frailty is characterized by decreased physiologic reserve and increased vulnerability to stress ... Full text Link to item Cite

What patients would have liked to have known in advance about physical function due to cancer treatment.

Journal article Support Care Cancer · May 4, 2026 PURPOSE: As cancer survivorship rises, provision of information during cancer care is increasingly important, especially regarding potential impacts on patients' health-related quality of life. We sought to understand information needs patients had before ... Full text Link to item Cite

Evaluating different scoring algorithms to assess communication ability for individuals living with Angelman syndrome: the Observer-Reported Communication Ability (ORCA) measure.

Journal article J Patient Rep Outcomes · May 2, 2026 BACKGROUND: Many neurodevelopmental disorders are associated with significantly impaired communication that impacts the individuals and their families' daily activities. The objective of this study is to evaluate the effectiveness of multiple scoring algor ... Full text Link to item Cite

The spectrum of communication abilities in children with 12 rare neurodevelopmental disorders: a qualitative study with caregivers.

Journal article J Child Psychol Psychiatry · May 2026 BACKGROUND: Our aim was to update an existing model of communication ability for children with rare neurodevelopmental disorders (NDDs) by centring caregiver and family perspectives. This project is part of a larger initiative to improve the measurement of ... Full text Link to item Cite

Congruence Between Child Self-Reported and Caregiver-Proxy-Reported Health-Related Quality of Life in Children With Juvenile Idiopathic Arthritis and Systemic Lupus Erythematosus.

Journal article J Rheumatol · May 1, 2026 OBJECTIVE: To explore congruence between child self-reported and caregiver-proxy-reported health-related quality of life (HRQOL) over time in juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE), and to identify facto ... Full text Link to item Cite

Sex Differences in PROMIS Pediatric Depressive Symptoms, Anxiety, and Psychological Stress Among Children and Adolescents Living With Pediatric Rheumatic Diseases.

Journal article J Rheumatol · May 1, 2026 OBJECTIVE: Children and adolescents living with juvenile idiopathic arthritis (JIA) and childhood-onset systemic lupus erythematosus (cSLE) frequently experience mental health comorbidities. This study evaluated sex differences in symptoms of depression, a ... Full text Link to item Cite

Applying the Argument-Based Approach to Validation With Clinical Outcome Assessments: Strategies for Constructing a Rationale.

Journal article Value Health · May 2026 The argument-based approach to validation, adopted in the US Food and Drug Administration's most recent Patient-Focused Drug Development draft guidance on clinical outcome assessments (COAs), emphasizes the importance of constructing explicit rationales to ... Full text Link to item Cite

Correction: Identifying High-Priority Ecological-Level Indicators of Structural Racism in Black and Hispanic/Latino Communities.

Journal article J Racial Ethn Health Disparities · April 10, 2026 Full text Link to item Cite

Caregiver Meaningful Score Differences and Meaningful Score Regions for the Observer-Reported Communication Ability Measure for Individuals with Angelman Syndrome.

Journal article Value Health · February 23, 2026 OBJECTIVES: This study presents a novel method for estimating meaningful score differences (MSDs) and meaningful score regions (MSRs) for the Observer-Reported Communication Ability (ORCA) Measure for individuals with Angelman syndrome (AS). METHODS: The A ... Full text Link to item Cite

Identifying High-Priority Ecological-Level Indicators of Structural Racism in Black and Hispanic/Latino Communities.

Journal article J Racial Ethn Health Disparities · February 9, 2026 Structural racism manifests as a multifaceted phenomenon in which various social and structural drivers of health can carry different levels of significance and impact. This study used a theory-driven approach to identify high-priority key ecological-level ... Full text Link to item Cite

Developing an Index to Measure Structural Racism: Methodological Process, Challenges, and Considerations.

Journal article Int J Environ Res Public Health · February 3, 2026 Access to valid and reliable measures of structural racism is essential for addressing health inequities, yet few validated ecological-level indices exist for assessing structural racism affecting Black and Hispanic populations in the United States. Guided ... Full text Link to item Cite

Beyond the Injury - Exploring the Foundations of Health-Related Quality of Life in Older Adults and Their Caregivers.

Journal article J Surg Res · February 2026 BACKGROUND: Older adults (aged ≥65 years) represent 21% of the trauma admissions in the United States, yet little is known about their health-related quality of life at baseline prior to injury. This study aimed to describe the pre-injury daily activities ... Full text Link to item Cite

Association of the Observer-Reported Communication Ability (ORCA) Measure with Established Communication Measures: Insights From the Angelman Syndrome Natural History Study.

Journal article J Autism Dev Disord · January 23, 2026 BACKGROUND: The Observer-Reported Communication Ability (ORCA) measure was developed to assess communication in individuals with Angelman syndrome (AS), a rare neurodevelopmental disorder characterized by severely impaired communication, global development ... Full text Link to item Cite

Real-world data and evidence in pain research: an IMMPACT comprehensive review and best practice recommendations.

Journal article Pain · January 1, 2026 Real-world data (RWD) can be defined as routinely collected clinical or administrative data that might be used for research purposes and to generate real-world evidence (RWE). Computerized search and data mining methods, large electronic databases, and the ... Full text Link to item Cite

"Insight into who you are as a human being": Perceptions of the Utility and Usability of a Values Assessment Tool (VAsT) for Women With Metastatic Breast Cancer.

Journal article Cancer Control · 2026 IntroductionWomen with metastatic breast cancer (mBC) often face complex treatment decisions that require careful consideration of values and priorities, which may be unique to each individual and evolve over the course of treatment. The patient-reported V ... Full text Link to item Cite

Meaningful Score Differences and Meaningful Score Regions of the Patient-Reported Outcomes Measurement Information System® Pediatric Asthma Impact Scale.

Journal article Value Health · October 2025 OBJECTIVES: To estimate meaningful score differences (MSDs) and meaningful score regions (MSRs) for the Patient-Reported Outcomes Measurement Information System® (PROMIS®) Pediatric Asthma Impact Scale to enhance score interpretability. METHODS: Secondary ... Full text Link to item Cite

Pain location after ureteroscopy differs based on sex and stone location: results from STENTS.

Journal article BJU Int · October 2025 OBJECTIVES: To expand understanding of the patient experience after ureteroscopy with stent placement for ureteric and/or renal stones using a body map to identify pain location and site-specific pain intensity over time, while evaluating the associations ... Full text Link to item Cite

Artificial intelligence and the future of patient-centered outcomes.

Journal article J Patient Rep Outcomes · September 26, 2025 BACKGROUND: Terheyden et al. recently described a compelling vision for large language model-enabled patient-reported outcome measures (LLM-PROMs). MAIN TEXT: We support Terheyden et al.'s vision and offer complementary observations about the potential for ... Full text Link to item Cite

A Systematic Review of Health-Related Quality-of-Life Measurement in Patients With Complicated Intraabdominal Infections.

Journal article Clin Infect Dis · August 6, 2025 BACKGROUND: In this systematic review, we assessed health-related quality-of-life (HRQoL) measures in patients with complicated intraabdominal infections (cIAIs) commonly associated with sepsis and evaluated the impact of cIAIs on HRQoL. METHODS: Following ... Full text Link to item Cite

Applying latent profile analysis to identify adolescents and young adults with chronic conditions at risk for poor health-related quality of life.

Journal article J Biopharm Stat · August 2025 The impact of chronic diseases on health-related quality of life (HRQOL) in adolescents and young adults (AYAs) is understudied. Latent profile analysis (LPA) can identify profiles of AYAs based on their HRQOL scores reflecting physical, mental, and social ... Full text Link to item Cite

Family caregiver observations of pain behaviors in infants and young children less than 3 years of age.

Journal article J Pain · August 2025 Pain in very young, preverbal children is often inadequately assessed and thus poorly treated, leading to short- and long-term negative consequences. Family caregivers are often the primary observers of young children's pain, but their perspectives are oft ... Full text Link to item Cite

Attitudes toward patient engagement in clinical pain research: Insights from individuals with chronic pain in the United States.

Journal article J Pain · July 2025 The value of engaging people with lived experience into chronic pain research is becoming increasingly recognized, yet the perspectives of individuals with chronic pain who have not previously participated in research are underexplored. This study aims to ... Full text Link to item Cite

COSMIN reporting guideline for studies on measurement properties of patient‑reported outcome measures: version 2.0.

Journal article Qual Life Res · July 2025 PURPOSE: In 2021 a set of consensus-based and empirically informed reporting recommendations were developed for primary studies of the measurement properties of patient‑reported outcome measures (PROMs). With their use, we determined that certain reporting ... Full text Link to item Cite

Clinical, psychosocial, and demographic factors associated with health-related quality of life profiles of women with breast cancer in early phases of survivorship

Journal article Journal of Psychosocial Oncology Research and Practice · July 1, 2025 Background: We aimed to identify health-related quality of life (HRQOL) profiles among breast cancer survivors and factors associated with each profile. Methods: Breast cancer survivors diagnosed 6–13 months earlier completed surveys assessing sociodemogra ... Full text Cite

Assessing patient-reported outcomes (PROs) in paediatric oncology research: Which PRO would a pro pick, if a pro was picking PROs?

Journal article Ejc Paediatric Oncology · June 1, 2025 Patient-reported outcomes (PROs) enable the report of experiences that are only known to the patient, such as how an individual's symptoms, functioning, and quality of life are impacted by a health condition or treatment. The choice of PRO depends on the i ... Full text Cite

Financial Toxicity in Spina Bifida: Development of a Patient and Caregiver Questionnaire.

Journal article Urology · May 2025 OBJECTIVE: To develop and validate the first patient- and caregiver-reported measure of spina bifida-specific "financial toxicity" (SBFT), that is, the negative side effects of healthcare-related expenditures. Assessing financial toxicity is a growing area ... Full text Link to item Cite

Prevalence of symptomatic toxicities for novel therapies in adult oncology trials: a scoping review.

Journal article JNCI Cancer Spectr · April 30, 2025 BACKGROUND: Patients' self-report of their symptoms can provide important data for the evaluation of treatment benefit and tolerability of oncology drugs. Contemporary treatment approaches, including immunotherapy and molecular targeted therapies, have uni ... Full text Link to item Cite

Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.

Journal article J Adolesc Young Adult Oncol · April 2025 Purpose: Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was t ... Full text Link to item Cite

Designing a Measure of Body Image: Cognitive Interview Findings from an Adolescent and Young Adult Cancer Sample.

Journal article J Adolesc Young Adult Oncol · April 2025 Purpose: A cancer diagnosis in adolescence and young adulthood significantly impacts a person's quality of life, particularly concerning identity, self-esteem, and subsequently, body image. This study aims to develop a psychometrically-sound patient-report ... Full text Link to item Cite

Development of Prediction Models for Severe Pain and Urinary Symptoms After Ureteroscopy With Ureteral Stent Placement: Results From the STENTS Study and Initial Validation of Pain Interference.

Journal article J Urol · April 2025 PURPOSE: We developed prediction models for severe pain and urinary symptoms after ureteroscopy with ureteral stent placement. MATERIALS AND METHODS: The development cohort included 424 adults and adolescents enrolled in the multicenter STENTS prospective ... Full text Link to item Cite

Comparison of patient-reported symptoms with multi-item patient-reported outcome measures of fatigue, anxiety, and depression in the clinical care of women undergoing chemotherapy for early breast cancer.

Journal article Qual Life Res · April 2025 BACKGROUND: As patient-reported symptoms are increasingly incorporated into routine clinical practice and captured in electronic medical records these data can be used to conduct health-related quality of life research studies. This study compares symptom ... Full text Link to item Cite

Symptom monitoring with electronic patient-reported outcomes during cancer treatment: final results of the PRO-TECT cluster-randomized trial.

Journal article Nat Med · April 2025 Symptoms are often underdetected during cancer treatment. To determine if symptom monitoring with electronic patient-reported outcomes (PROs) improves clinical outcomes, we conducted a cluster-randomized trial in which 52 oncology practices were assigned t ... Full text Link to item Cite

Mapping immune checkpoint inhibitor side effects to item libraries for use in real-time side effect monitoring systems.

Journal article J Patient Rep Outcomes · March 6, 2025 BACKGROUND: Monitoring for the side effects of novel therapies using patient-reported outcomes (PROs) is critical for ensuring patient safety. Existing static patient-reported outcome measures may not provide adequate coverage of novel side effects. Item l ... Full text Link to item Cite

Recalling what we thought we knew about recall periods: a qualitative descriptive study of how adults diagnosed with cancer use recall periods for patient-reported outcome items about physical function.

Journal article Qual Life Res · March 2025 OBJECTIVES: In cancer studies, assessment of patients' physical function can provide insight into cancer-related symptoms and the side effects of treatment. Physical function can be assessed using patient-reported outcome measures (PROMs), which may or may ... Full text Open Access Link to item Cite

Assessing patient-reported outcomes in primary sclerosing cholangitis: an update.

Journal article Curr Opin Gastroenterol · March 1, 2025 PURPOSE OF REVIEW: Patient-reported outcome (PRO) measures validated in primary sclerosing cholangitis (PSC) are needed for clinical trials. This review describes the recent US Food & Drug Administration (FDA) Patient-Focused Drug Development (PFDD) guidel ... Full text Link to item Cite

Health-related quality of life profiles of adults with arthritis and/or fibromyalgia: a cross-sectional study.

Journal article Qual Life Res · February 2025 PURPOSE: Adults with arthritis experience poor health-related quality of life (HRQOL), though research often focuses on single HRQOL outcomes or summary scores. We aimed to identify HRQOL profiles in adults with different arthritis types and determine risk ... Full text Link to item Cite

Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information system® PROMIS®-16 profile.

Journal article Qual Life Res · January 2025 PURPOSE: We describe development of a short health-related quality of life measure, the patient-reported outcomes measurement information system® (PROMIS®)-16 Profile, which generates domain-specific scores for physical function, ability to participate in ... Full text Link to item Cite

Correction: Development of an ultra-short measure of eight domains of health-related quality of life for research and clinical care: the patient-reported outcomes measurement information systemⓇ PROMISⓇ-16 profile.

Journal article Qual Life Res · January 2025 Full text Link to item Cite

Symptom Monitoring With Patient-Reported Outcomes During Pediatric Cancer Care.

Journal article JAMA · December 17, 2024 Full text Link to item Cite

Evaluating anchor variables and variation in meaningful score differences for PROMIS® Pediatric measures in children and adolescents living with a rheumatic disease.

Journal article Qual Life Res · December 2024 PURPOSE: Meaningful score differences (MSDs), as defined by recent FDA guidance, can improve the interpretation of outcome measure scores and score changes. Well-accepted methods for estimating MSDs typically rely on external anchor variables, but the appl ... Full text Link to item Cite

Use of patient-reported global assessment measures in clinical trials of chronic pain treatments: ACTTION systematic review and considerations.

Journal article Pain · November 1, 2024 Establishing clinically meaningful changes in pain experiences remains important for clinical trials of chronic pain treatments. Regulatory guidance and pain measurement initiatives have recommended including patient-reported global assessment measures (eg ... Full text Link to item Cite

Pain Interference in Juvenile Idiopathic Arthritis.

Journal article J Rheumatol · November 1, 2024 OBJECTIVE: Despite treatment advances, pain remains a serious problem for many children with juvenile idiopathic arthritis (JIA). To better understand pain in children with JIA and identify potentially modifiable factors, this study evaluated Patient-Repor ... Full text Link to item Cite

Development and evaluation of a questionnaire to capture environmental and occupational inhalational exposures in adults with fibrotic interstitial lung disease.

Journal article Respir Res · October 15, 2024 BACKGROUND: Identification of exposures in patients with interstitial lung diseases (ILDs) is essential for diagnosis and management and can be facilitated through the use of exposure questionnaires. However, for most ILDs, a patient-focused questionnaire ... Full text Link to item Cite

Development of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research.

Journal article Ann Rheum Dis · October 8, 2024 OBJECTIVES: Childhood-onset systemic lupus erythematosus (cSLE), representing 15%-20% of individuals with SLE, has been difficult to study globally due to differences between registries. This initiative, supported by Childhood Arthritis Rheumatology Resear ... Full text Link to item Cite

Asking the "Right" Questions about Financial Hardship: Using Cognitive Interviews with Adolescents and Young Adults with Cancer and Their Caregivers to Inform Measure Development.

Journal article J Adolesc Young Adult Oncol · October 2024 Purpose: Financial hardship as a result of cancer treatment can have a significant and lasting negative impact on adolescents and young adults (AYAs) and their families. To address a lack of developmentally informed and psychometrically sound measures of f ... Full text Link to item Cite

The FACT-GP5 as a global tolerability measure: responsiveness and robustness to missing assessments.

Journal article Qual Life Res · October 2024 PURPOSE: The Functional Assessment of Cancer Therapy item (FACT-GP5) has the potential to provide an understanding of global treatment tolerability from the patient perspective. Longitudinal evaluations of the FACT-GP5 and challenges posed by data missing- ... Full text Link to item Cite

Emotional and functional well-being in long-term breast cancer survivorship.

Journal article Cancer Causes Control · August 2024 PURPOSE: Emotional and functional well-being (EWB and FWB) are important components of mental health and quality of life. This study aims to evaluate long-term EWB and FWB in breast cancer (BC) survivors. METHODS: The Carolina Breast Cancer Study Phase 3 o ... Full text Link to item Cite

Demographic and Clinical Factors Associated With Health-Related Quality-of-Life Profiles Among Prostate Cancer Survivors.

Journal article JCO Oncol Pract · July 2024 PURPOSE: Our purpose was to describe the prevalence and predictors of symptom and function clusters related to physical, emotional, and social components of general health-related quality of life (HRQOL) in a population-based sample of prostate cancer (PCa ... Full text Link to item Cite

Facets of physical function assessed by patient-reported outcome measures in oncology research.

Journal article Qual Life Res · July 2024 PURPOSE: The U.S. Food & Drug Administration has identified physical functioning (PF) as a core patient-reported outcome (PRO) in cancer clinical trials. The purpose of this study was to identify PF PRO measures (PROMs) in adult cancer populations and clas ... Full text Open Access Link to item Cite

What facets of physical function are most important to adults diagnosed with cancer?

Journal article Qual Life Res · July 2024 PURPOSE: Successful patient-focused drug development involves selecting and measuring outcomes in clinical trials that are important to patients. The U.S. Food & Drug Administration's definition of clinical benefit includes how patients feel, function, or ... Full text Link to item Cite

Understanding reliability of the observer-reported communication ability measure within Angelman syndrome through the lens of generalizability theory.

Journal article J Patient Rep Outcomes · May 14, 2024 AIMS: Caregivers rate improved communication ability as one of the most desired outcomes for successful interventions for individuals with Angelman syndrome (AS). When measuring communication ability in clinical trials, the reliability of such measures is ... Full text Link to item Cite

Systematic Literature Review of Health-Related Quality-of-Life Measures for Caregivers of Older Adult Trauma Patients.

Journal article J Surg Res · May 2024 INTRODUCTION: As the older adult population increases, hospitals treat more older adults with injuries. After leaving, these patients suffer from decreased mobility and independence, relying on care from others. Family members often assume this responsibil ... Full text Link to item Cite

Facilitators and barriers to eliciting physical function goals before and after surgery: A qualitative study with clinicians.

Journal article Patient Educ Couns · February 2024 OBJECTIVE: Describe clinicians' perspectives of facilitators and barriers to eliciting physical function goals from patients with multiple chronic conditions pre- and post-surgery. METHODS: Semi-structured qualitative interviews were conducted with clinici ... Full text Link to item Cite

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer.

Journal article BMC Cancer · January 24, 2024 BACKGROUND: Adolescents and young adults (AYAs) with cancer, defined as individuals aged 15-39 years at initial cancer diagnosis, form a unique population; they face age-specific issues as they transition to adulthood. This paper presents the protocol for ... Full text Link to item Cite

Relationship between area-level socioeconomic status and health-related quality of life among cancer survivors.

Journal article JNCI Cancer Spectr · January 4, 2024 Area-level socioeconomic status (SES) impacts cancer outcomes, such as stage at diagnosis, treatments received, and mortality. However, less is known about the relationship between area-level SES and health-related quality of life (HRQOL) for cancer surviv ... Full text Link to item Cite

Agreement and disagreement between child-caregiver symptom and function reports in pediatric oncology.

Journal article Pediatr Blood Cancer · January 2024 BACKGROUND/OBJECTIVE: The use of patient-reported outcomes (PRO) is increasing in pediatric clinical practice and research, including in clinical trials. Treatment teams are now able to discern differences in symptom and function reports between children w ... Full text Link to item Cite

The Value of Patient-Reported Outcomes to Predict Symptom Burden and Health-Related Quality of Life After Chemoradiation for Cervical Cancer: A Prospective Study.

Journal article Pract Radiat Oncol · 2024 PURPOSE: Patients with cervical cancer undergoing chemoradiation have high symptom burden. We performed an analysis of prospectively collected data on patient-reported outcomes to determine characteristics predictive of poor treatment experience. METHODS A ... Full text Link to item Cite

Real World Characterization of Chronic Pain, Success Rates and Implant Rates: Evidence from a Digital Health Platform of Patients Undergoing Spinal Cord Stimulation Evaluations.

Journal article J Pain · December 2023 Spinal cord stimulation is an effective treatment for those experiencing chronic back and leg pain but requires a temporary evaluation period (SCSeval) before permanent implantation. We present real-world data from 7,000 patients who underwent SCSeval whil ... Full text Link to item Cite

Measuring PROMIS Asthma Impact cut point scores for identifying uncontrolled asthma in children.

Journal article J Allergy Clin Immunol Pract · December 2023 Full text Link to item Cite

Designing and validating novel communication measures for pediatric, adolescent, and young adult oncology care and research: The PedCOM measures.

Journal article Pediatr Blood Cancer · December 2023 BACKGROUND: High-quality communication in pediatric and adolescent cancer is the standard of care. Yet, we lack pediatric-specific communication measures. We designed self-report and caregiver-report communication measures for use in pediatric oncology set ... Full text Link to item Cite

Health-related quality of life profiles in adolescents and young adults with chronic conditions.

Journal article Qual Life Res · November 2023 PURPOSE: To assess health-related quality of life (HRQOL) among adolescents and young adults (AYAs) with chronic conditions. METHODS: AYAs (N = 872) aged 14-20 years completed NIH's Patient-Reported Outcomes Measurement Information System® (PROMIS®) measur ... Full text Link to item Cite

Defining Outcomes that Matter Most to Parents: Challenging and Important Work.

Journal article J Pediatr · September 2023 Full text Link to item Cite

More Than a Headache: Lived Experience of Migraine in Youth.

Journal article Pediatr Neurol · September 2023 BACKGROUND: Migraine is the leading cause of disability among adolescents and young adults. We aimed to characterize the impact of migraine on the experience of children, adolescents, and caregivers. METHODS: This descriptive qualitative study recruited yo ... Full text Link to item Cite

Validation of the Observer-Reported Communication Ability (ORCA) measure for individuals with Rett syndrome.

Journal article Eur J Paediatr Neurol · September 2023 PURPOSE: The study goal was to validate the Observer-Reported Communication Ability (ORCA) measure for use with females with Rett Syndrome (RTT). METHODS: Qualitative interviews, including concept elicitation and cognitive interviewing methods, were conduc ... Full text Link to item Cite

Association of Patient-Reported Health-Related Quality of Life With Physician-Reported Toxicities in Adolescents and Young Adults Receiving Radiation Therapy for Cancer.

Journal article JCO Oncol Pract · August 2023 PURPOSE: Radiation therapy (RT) may cause toxicities in adolescents and young adults (AYAs, age 15-39 years) with cancer. However, the range of RT-related toxicities in AYAs and the affect on health-related quality of life (HRQOL) has not been well studied ... Full text Link to item Cite

Patient-reported quality of life in adolescents and young adults with cancer who received radiation therapy.

Journal article Cancer Med · July 2023 BACKGROUND: Radiation therapy (RT) is a common treatment for adolescents and young adults (AYAs, 15-39 years old) with cancer; however, it may cause toxicities that affect health-related quality-of-life (HRQOL). Thus, we assessed HRQOL in AYAs before, duri ... Full text Link to item Cite

Swahili translation and cultural adaptation of the pediatric patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE).

Journal article J Patient Rep Outcomes · June 12, 2023 BACKGROUND: The pediatric patient-reported outcomes version of the common terminology criteria for adverse event measure was developed and validated for use in pediatric cancer clinical trials to better capture the symptom experiences through direct self-r ... Full text Link to item Cite

Job loss, return to work, and multidimensional well-being after breast cancer treatment in working-age Black and White women.

Journal article J Cancer Surviv · June 2023 PURPOSE: Breast cancer survivorship has improved in recent decades, but few studies have assessed the patterns of employment status following diagnosis and the impact of job loss on long-term well-being in ethnically diverse breast cancer survivors. We hyp ... Full text Link to item Cite

Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints in Cancer Clinical Trials-Innovative Medicines Initiative (SISAQOL-IMI): stakeholder views, objectives, and procedures.

Journal article Lancet Oncol · June 2023 Patient-reported outcomes (PROs), such as symptoms, functioning, and other health-related quality-of-life concepts are gaining a more prominent role in the benefit-risk assessment of cancer therapies. However, varying ways of analysing, presenting, and int ... Full text Link to item Cite

Risk Factors for Increased Stent-associated Symptoms Following Ureteroscopy for Urinary Stones: Results From STENTS.

Journal article J Urol · May 2023 PURPOSE: The STudy to Enhance uNderstanding of sTent-associated Symptoms sought to identify risk factors for pain and urinary symptoms, as well as how these symptoms interfere with daily activities after ureteroscopy for stone treatment. MATERIALS AND METH ... Full text Link to item Cite

Validation of the Observer-Reported Communication Ability (ORCA) Measure for Individuals With Angelman Syndrome.

Journal article Am J Intellect Dev Disabil · May 1, 2023 There is a critical need for high-quality clinical outcome assessments to capture the important aspects of communication ability of individuals with Angelman syndrome (AS). To center the perspective of caregivers, our team developed the novel Observer-Repo ... Full text Open Access Link to item Cite

Exploring Communication Ability in Individuals With Angelman Syndrome: Findings From Qualitative Interviews With Caregivers.

Journal article Am J Intellect Dev Disabil · May 1, 2023 Communication deficits have a substantial impact on quality of life for individuals with Angelman syndrome (AS) and their families, but limited qualitative work exists to support the necessary content of measures aiming to assess communication for these in ... Full text Open Access Link to item Cite

Patient-Reported Outcomes in Pediatric Patients With Cancer.

Journal article Am Soc Clin Oncol Educ Book · May 2023 Patient-reported outcomes (PROs) are reported directly by the patients about their own health. The objective of this article was to provide an overview of PROs in pediatric cancer, to describe how PROs can be incorporated into pediatric cancer clinical tri ... Full text Link to item Cite

Selecting patient-reported outcome measures of health-related quality of life in adult rheumatology: quality and breadth of coverage.

Journal article Rheumatol Int · April 2023 Patient-centered research should assess outcomes important to patients and include patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQOL) domains. Using a well-known HRQOL framework (World Health Organization QOL, or WHO ... Full text Link to item Cite

Expectations for Improvement: A Neglected but Potentially Important Covariate or Moderator for Chronic Pain Clinical Trials.

Journal article J Pain · April 2023 Variability in pain-related outcomes can hamper assay sensitivity of chronic pain clinical trials. Expectations of outcome in such trials may account for some of this variability, and thereby impede development of novel pain treatments. Measurement of part ... Full text Link to item Cite

Health-related quality of life in adolescents and young adults with cancer who received radiation therapy: a scoping review.

Journal article Support Care Cancer · March 24, 2023 PURPOSE: Radiation therapy (RT) is a critical component of treatment for adolescents and young adults (AYAs, age 15-39 years old) diagnosed with cancer. Limited prior studies have focused on AYAs receiving RT despite the potentially burdensome effects of R ... Full text Link to item Cite

Incorporating Information From Proxies for Patient-Centered Outcomes in Adult and Pediatric Oncology Settings.

Journal article J Clin Oncol · March 10, 2023 Full text Link to item Cite

Health-related quality of life by race, ethnicity, and country of origin among cancer survivors.

Journal article J Natl Cancer Inst · March 9, 2023 BACKGROUND: Typical cancer research studies of health-related quality of life (HRQOL) in the United States do not include country of origin when examining race and ethnic group differences. This population-based, cross-sectional study used an innovative me ... Full text Link to item Cite

Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy.

Journal article Cancer Nurs · March 2023 BACKGROUND: Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemotherapy-related adv ... Full text Link to item Cite

Investigating gender-based differential item functioning on the Kansas City Cardiomyopathy Questionnaire (KCCQ) using qualitative content analysis.

Journal article Qual Life Res · March 2023 PURPOSE: The purpose of this study is to evaluate potential gender-based differences in interpreting the Kansas City Cardiomyopathy Questionnaire (KCCQ-23) and to explore if there are aspects of health-related quality of life (HRQOL) not captured by the KC ... Full text Link to item Cite

Identifying symptomatic adverse events using the patient-reported outcomes version of the common terminology criteria for adverse events in patients with non-small cell lung cancer with epidermal growth factor receptor exon 20 insertion mutations.

Journal article Cancer Med · March 2023 OBJECTIVE: Tolerability and safety of treatments are important in oncology trials and should be informed by patient assessments. We identified the most relevant patient-reported symptomatic adverse events (AEs) to measure in patients with non-small cell lu ... Full text Link to item Cite

Comparison of Patient-Reported Outcomes Measurement Information System Computerized Adaptive Testing Versus Fixed Short Forms in Juvenile Myositis.

Journal article Arthritis Care Res (Hoboken) · February 2023 OBJECTIVE: Patient-Reported Outcomes Measurement Information System (PROMIS) measures can be administered via computerized adaptive testing (CAT) or fixed short forms (FSFs), but the empirical benefits of CAT versus FSFs are unknown in juvenile myositis (J ... Full text Link to item Cite

Do PRO Measures Function the Same Way for all Individuals With Heart Failure?

Journal article J Card Fail · February 2023 Women diagnosed with heart failure report worse quality of life than men on patient-reported outcome (PRO) measures. An inherent assumption of PRO measures in heart failure is that women and men interpret questions about quality of life the same way. If th ... Full text Link to item Cite

Recommendations on the use of item libraries for patient-reported outcome measurement in oncology trials: findings from an international, multidisciplinary working group.

Journal article Lancet Oncol · February 2023 The use of item libraries for patient-reported outcome (PRO) measurement in oncology allows for the customisation of PRO assessment to measure key health-related quality of life concepts of relevance to the target population and intervention. However, no h ... Full text Link to item Cite

Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation.

Journal article BMJ Open · January 27, 2023 OBJECTIVES: Evaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or system ... Full text Link to item Cite

Patient perspectives on considerations, tradeoffs, and experiences with multiple myeloma treatment selection: a qualitative descriptive study.

Journal article BMC Cancer · January 19, 2023 BACKGROUND: Advances in multiple myeloma treatment and a proliferation of treatment options have resulted in improved survival rates and periods of symptom-free remission for many multiple myeloma patients. As a result, health-related quality of life (HRQo ... Full text Link to item Cite

Inclusion of a core patient-reported outcomes battery in adolescent and young adult cancer clinical trials.

Journal article J Natl Cancer Inst · January 10, 2023 Disparities in care, treatment-related toxicity and health-related quality of life (HRQoL) for adolescents and young adults (AYAs, aged 15-39 years) with cancer are under-addressed partly because of limited collection of patient-reported outcomes (PROs) in ... Full text Link to item Cite

Capturing the young child's reports of cancer treatment tolerability: Does our practice reflect an assumption that they cannot report?

Journal article Pediatr Blood Cancer · January 2023 Full text Link to item Cite

One Voice Is Good, But More Is Better: Symptom and Toxicity Reporting in Pediatric Oncology.

Journal article Cancer Nurs · January 2023 Full text Link to item Cite

Computerized-adaptive testing versus short forms for pediatric inflammatory bowel disease patient-reported outcome assessment.

Journal article J Clin Transl Sci · 2023 INTRODUCTION: Computerized-adaptive testing (CAT) may increase reliability or reduce respondent burden for assessing patient-reported outcomes compared with static short forms (SFs). We compared CAT versus SF administration of the Patient-Reported Outcomes ... Full text Link to item Cite

Did a bot eat your homework? An assessment of the potential impact of bad actors in online administration of preference surveys.

Journal article PLoS One · 2023 BACKGROUND: Online administration of surveys has a number of advantages but can also lead to increased exposure to bad actors (human and non-human bots) who can try to influence the study results or to benefit financially from the survey. We analyze data c ... Full text Link to item Cite

Development and Psychometric Evaluation of Healthcare Access Measures among Women with Ovarian Cancer.

Journal article Cancers (Basel) · December 19, 2022 Several proposed theoretical frameworks have defined the complex nature of healthcare access (HCA) [...]. ... Full text Link to item Cite

The prevalence and risk of symptom and function clusters in colorectal cancer survivors.

Journal article J Cancer Surviv · December 2022 PURPOSE: Our purpose was to describe the prevalence and predictors of symptom and function clusters in a diverse cohort of colorectal cancer survivors. METHODS: We used data from a cohort of 909 adult colorectal cancer survivors. Participants were surveyed ... Full text Link to item Cite

Longitudinal use of patient reported outcomes in pediatric leukemia and lymphoma reveals clinically relevant symptomatic adverse events.

Journal article Pediatr Blood Cancer · December 2022 BACKGROUND: Leukemia and lymphoma (LL) are the most common cancer diagnoses of childhood with high survival rates, but not without impact on the child's functioning and quality of life. This study aimed to use patient-reported data to describe the symptoma ... Full text Link to item Cite

Initial Content Validation and Roadmap for a New Patient-Reported Outcome Measure of Pain Intensity.

Journal article J Pain · November 2022 Measures of pain intensity (eg, numeric rating scales [NRS]) are widely used in clinical research and practice. While these measures have evidence for validity and reliability, poor standardization of instructions, and response options limits precision of ... Full text Link to item Cite

Listening to the Patient Voice Adds Value to Cancer Clinical Trials.

Journal article J Natl Cancer Inst · October 6, 2022 Randomized clinical trials are critical for evaluating the safety and efficacy of interventions in oncology and informing regulatory decisions, practice guidelines, and health policy. Patient-reported outcomes (PROs) are increasingly used in randomized tri ... Full text Link to item Cite

Can Steps per Day Reflect Symptoms in Children and Adolescents Undergoing Cancer Treatment?

Journal article Cancer Nurs · September 2022 BACKGROUND: Multiple symptoms occur in children receiving cancer therapy. Decreased steps per day may be associated with burdensome symptoms. OBJECTIVE: To evaluate associations between self-reported symptoms (pain interference, anxiety, depressive symptom ... Full text Link to item Cite

Sustainable and equivalent improvements in symptoms and functional well-being following viral cure from ledipasvir/sofosbuvir versus elbasvir/grazoprevir for chronic hepatitis C infection: Findings from the randomized PRIORITIZE trial.

Journal article J Viral Hepat · September 2022 The PRIORITIZE trial (clinicaltrials.gov: NCT02786537) was the first comparative effectiveness study to directly compare ledipasvir/sofosbuvir (LDV/SOF) and elbasvir/grazoprevir (EBR/GZR) for the treatment of chronic hepatitis C virus (HCV). A secondary ai ... Full text Link to item Cite

Patient-Reported Outcome Measures in Clinical Research.

Journal article JAMA · August 2, 2022 Full text Link to item Cite

Financial burden for caregivers of adolescents and young adults with cancer.

Journal article Psychooncology · August 2022 OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept el ... Full text Link to item Cite

Concordance between Patients and Clinicians for Reporting Symptoms Associated with Treatment for Chronic Hepatitis C during a Pragmatic Clinical Trial

Journal article GastroHep · July 4, 2022 Background. Despite high efficacy rates for direct acting antiviral regimens to cure hepatitis C virus infection, many patients experience treatment-related symptoms. Accurate reporting of adverse events is mandatory to determine drug safety. Previ ... Full text Cite

Self-Reported Health Outcomes of Children and Youth with 10 Chronic Diseases.

Journal article J Pediatr · July 2022 OBJECTIVES: To identify pediatric patient-reported outcomes (PROs) that are associated with chronic conditions and to evaluate the effects of chronic disease activity on PROs. STUDY DESIGN: Participants (8-24 years old) and their parents were enrolled into ... Full text Link to item Cite

Patient-Reported Chronic Pain Intensity: More Than Meets the Eye.

Journal article Patient · July 2022 Full text Link to item Cite

Effect of Electronic Symptom Monitoring on Patient-Reported Outcomes Among Patients With Metastatic Cancer: A Randomized Clinical Trial.

Journal article JAMA · June 28, 2022 IMPORTANCE: Electronic systems that facilitate patient-reported outcome (PRO) surveys for patients with cancer may detect symptoms early and prompt clinicians to intervene. OBJECTIVE: To evaluate whether electronic symptom monitoring during cancer treatmen ... Full text Link to item Cite

Recommended scoring approach for the pediatric patient-reported outcomes version of the Common Terminology Criteria for Adverse Events.

Journal article Pediatr Blood Cancer · June 2022 BACKGROUND: Collecting symptom, function, and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We devel ... Full text Link to item Cite

The PROTEUS-Trials Consortium: Optimizing the use of patient-reported outcomes in clinical trials.

Journal article Clin Trials · June 2022 BACKGROUND: The assessment of patient-reported outcomes in clinical trials has enormous potential to promote patient-centred care, but for this potential to be realized, the patient-reported outcomes must be captured effectively and communicated clearly. O ... Full text Link to item Cite

Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials.

Journal article J Clin Oncol · May 20, 2022 PURPOSE: To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and caregivers (Ped-P ... Full text Link to item Cite

Anxiety and Depressive Symptoms Are Not Associated With Future Pediatric Crohn's Disease Activity.

Journal article Inflamm Bowel Dis · May 4, 2022 BACKGROUND: Studies of adults with Crohn's disease (CD) suggest that poor mental health precedes worsening disease activity. We evaluated whether depression and/or anxiety forecast worsening pediatric CD disease activity. METHODS: Through the Inflammatory ... Full text Link to item Cite

The use of patient-reported outcome measures to classify type 1 and 2 systemic lupus erythematosus activity.

Journal article Lupus · May 2022 OBJECTIVE: We developed a model that categorizes systemic lupus erythematosus (SLE) activity into two dimensions: Type 1 SLE consists of inflammatory activity, including arthritis, nephritis, and rashes; Type 2 SLE includes fatigue, myalgia, mood disturban ... Full text Link to item Cite

Beyond pain control: Outcome and treatment preferences in pediatric migraine.

Journal article Headache · May 2022 OBJECTIVE: The objective of this study was to describe treatment preferences and perceived quality of existing outcome measures among children and adolescents with migraine and their caregivers. BACKGROUND: Across disciplines, there is increasing recogniti ... Full text Link to item Cite

Next Step for Global Adolescent and Young Adult Oncology: A Core Patient-Centered Outcome Set.

Journal article J Natl Cancer Inst · April 11, 2022 The relatively small number of cancers in the adolescent and young adult (AYA) age group, those aged 15-39 years, does not appropriately reflect the personal and societal costs of cancer in this population, as reflected in the potential years of life lost ... Full text Link to item Cite

Stakeholder-informed conceptual framework for financial burden among adolescents and young adults with cancer.

Journal article Psychooncology · April 2022 BACKGROUND: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing indep ... Full text Link to item Cite

Assessing Patient-Reported Outcomes in Pediatric Rheumatic Diseases: Considerations and Future Directions.

Journal article Rheum Dis Clin North Am · February 2022 For children with pediatric rheumatic diseases (PRDs), the inclusion of patient-reported outcomes (PROs) is critical to inform decision making in health care delivery and research settings. PROs are direct reports from a child on their health status, witho ... Full text Link to item Cite

Patients' Experiences With Staphylococcus aureus and Gram-Negative Bacterial Bloodstream Infections: Results From Cognitive Interviews to Inform Assessment of Health-Related Quality of Life.

Journal article Open Forum Infect Dis · February 2022 BACKGROUND: We previously conducted a concept elicitation study on the impact of Staphylococcus aureus and gram-negative bacterial bloodstream infections (SAB/GNB) on health-related quality of life (HRQoL) from the patient's perspective and found significa ... Full text Open Access Link to item Cite

"If I Get Cured, My Whole Quality of Life Will Change": Patients' Anticipated and Actualized Benefits Following Cure from Chronic Hepatitis C.

Journal article Dig Dis Sci · January 2022 BACKGROUND: Patients' motivations for undergoing direct-acting antiviral (DAA) therapy for chronic hepatitis C may include anticipation of treatment benefits not well described in the literature. AIMS: Evaluate patients' anticipated and actualized improvem ... Full text Link to item Cite

Patient-reported treatment toxicity and adverse events in Black and White women receiving chemotherapy for early breast cancer.

Journal article Breast Cancer Res Treat · January 2022 PURPOSE: It is not known whether chemotherapy-related symptom experiences differ between Black and White women with early breast cancer (Stage I-III) receiving current chemotherapy regimens and, in turn, influences dose delay, dose reduction, early treatme ... Full text Link to item Cite

Validating a Self-Reported Medication Nonadherence Measure in the Context of Multiple Chronic Diseases and Routes of Medication Administration Among Patients with Type 2 Diabetes.

Journal article Patient Prefer Adherence · 2022 INTRODUCTION: Patients with diabetes may take oral and injectable medications and often have comorbid chronic diseases. It is unclear whether to assess nonadherence for oral and injectable medications separately or combined and for comorbid conditions sepa ... Full text Link to item Cite

Evaluations of the sum-score-based and item response theory-based tests of group mean differences under various simulation conditions.

Journal article Stat Methods Med Res · December 2021 The use of patient-reported outcomes measures is gaining popularity in clinical trials for comparing patient groups. Such comparisons typically focus on the differences in group means and are carried out using either a traditional sum-score-based approach ... Full text Link to item Cite

Low-touch, team-based care for co-morbidity management in cancer patients: the ONE TEAM randomized controlled trial.

Journal article BMC Fam Pract · November 18, 2021 BACKGROUND: As treatments for cancer have improved, more people are surviving cancer. However, compared to people without a history of cancer, cancer survivors are more likely to die of cardiovascular disease (CVD). Increased risk for CVD-related mortality ... Full text Link to item Cite

Racial differences in user experiences and perceived value of electronic symptom monitoring in a cohort of black and white bladder and prostate cancer patients.

Journal article Qual Life Res · November 2021 PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among ... Full text Link to item Cite

Evaluating the Contribution of Patient-Provider Communication and Cancer Diagnosis to Racial Disparities in End-of-Life Care Among Medicare Beneficiaries.

Journal article J Gen Intern Med · November 2021 BACKGROUND: The quality of end-of-life (EOL) care in the USA remains suboptimal, with significant variations in care by race and across disease subgroups. Patient-provider communication may contribute to racial and disease-specific variations in EOL care o ... Full text Link to item Cite

Symptoms and functioning improve after chronic hepatitis C cure as assessed by the Memorial Symptom Assessment Scale and PROMIS measures.

Journal article J Viral Hepat · October 2021 The benefits of chronic hepatitis C viral (HCV) cure on various aspects of patients’ health experiences may be under-appreciated. The aim of this study was to conduct an in-depth evaluation of change in a comprehensive set of patient-reported symptoms and ... Full text Link to item Cite

Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials.

Journal article Cancer · October 1, 2021 BACKGROUND: The Lansky Play-Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child-reported function ... Full text Link to item Cite

Pediatric lymphoma patients in Malawi present with poor health-related quality of life at diagnosis and improve throughout treatment and follow-up across all Pediatric PROMIS-25 domains.

Journal article Pediatr Blood Cancer · October 2021 BACKGROUND: Patient-reportedoutcomes (PROs) that assess health-related quality of life (HRQoL) are increasingly important components of cancer care and research that are infrequently used in sub-Saharan Africa (SSA). METHODS: We administered the Chichewa P ... Full text Open Access Link to item Cite

Use of Patient-Reported Outcomes Measurement Information System (PROMIS) measures to characterise health status for patients seeking care from an orthopaedic provider: a retrospective cohort study.

Journal article BMJ Open · September 2, 2021 OBJECTIVES: Characterise the health status of patients newly consulting an orthopaedic specialist across eight clinical subspecialties. DESIGN: Retrospective cohort. SETTING: 18 orthopaedic clinics, including 8 subspecialties (14 ambulatory and 4 hospital ... Full text Open Access Link to item Cite

Guest Editors' Introduction to the Invited Special Section.

Journal article Psychometrika · September 2021 Full text Link to item Cite

Psychometric Evaluation of the Kansas City Cardiomyopathy Questionnaire in Men and Women With Heart Failure.

Journal article Circ Heart Fail · September 2021 BACKGROUND: The Kansas City Cardiomyopathy Questionnaire (KCCQ) has been psychometrically evaluated in multiple heart failure (HF) populations, but the comparability of its psychometric properties between men and women is unknown. METHODS: Data from 3 clin ... Full text Link to item Cite

Electronic symptom monitoring in pediatric patients hospitalized for chemotherapy.

Journal article Cancer · August 15, 2021 BACKGROUND: Using patient-reported outcomes for symptom monitoring in oncology has resulted in significant benefits for adult patients with cancer. The feasibility of this approach has not been established in the routine care of children with cancer. METHO ... Full text Link to item Cite

Validity and Responsiveness of the Patient-reported Outcomes Measurement Information System in Children With Ulcerative Colitis.

Journal article J Pediatr Gastroenterol Nutr · July 1, 2021 OBJECTIVES: Patient-reported outcome measures allow children to directly report on their health and well-being. We assessed the construct validity and responsiveness of the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measure ... Full text Link to item Cite

Enabling patient-reported outcome measures in clinical trials, exemplified by cardiovascular trials.

Journal article Health Qual Life Outcomes · June 13, 2021 OBJECTIVES: There has been limited success in achieving integration of patient-reported outcomes (PROs) in clinical trials. We describe how stakeholders envision a solution to this challenge. METHODS: Stakeholders from academia, industry, non-profits, insu ... Full text Link to item Cite

Subjective Toxicity Profiles of Children in Treatment for Cancer: A New Guide to Supportive Care?

Journal article J Pain Symptom Manage · June 2021 CONTEXT: Children and adolescents with cancer experience treatment-related, subjective adverse events (AEs). Identifying distinct groups of patients who predictably experience higher prevalence of AEs could guide patient care. OBJECTIVES: Study aims were t ... Full text Link to item Cite

Association of step count with PROMIS pediatric health-related quality of life measures in children and adolescents with persistent asthma.

Journal article J Allergy Clin Immunol Pract · June 2021 Full text Link to item Cite

Systematic review of financial burden assessment in cancer: Evaluation of measures and utility among adolescents and young adults and caregivers.

Journal article Cancer · June 1, 2021 The cost of cancer care is rising and represents a stressor that has significant and lasting effects on quality of life for many patients and caregivers. Adolescents and young adults (AYAs) with cancer are particularly vulnerable. Financial burden measures ... Full text Link to item Cite

Reply to the Importance of a collaborative health-related quality of life measurement strategy for adolescents and young adults with cancer.

Journal article Cancer · May 15, 2021 Full text Link to item Cite

Validation of the caregiver Pediatric Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events measure.

Journal article Cancer · May 1, 2021 BACKGROUND: Despite improvements in survival rates, cancer treatments have significant side effects that affect the quality of life of children and their families. When an ill child cannot self-report symptoms (eg, he or she is too ill), caregiver (parent) ... Full text Link to item Cite

Patient-reported outcomes 12 months after hepatitis C treatment with direct-acting antivirals: Results from the PROP UP study.

Journal article Liver Int · April 2021 BACKGROUND & AIMS: The long-term impact of hepatitis C virus (HCV) therapy with all-oral direct-acting antivirals (DAAs) on patient-reported outcomes (PROs) has not been well-described. We characterized changes in PROs from pre-treatment to 12 months post- ... Full text Link to item Cite

Patient-reported symptom severity, interference with daily activities, and adverse events in older and younger women receiving chemotherapy for early breast cancer.

Journal article Cancer · March 15, 2021 BACKGROUND: To the authors' knowledge, it is unknown whether patient-reported symptom severity and symptom interference with daily activities differ between younger (aged <65 years) and older (aged ≥65 years) women receiving similar chemotherapy regimens f ... Full text Link to item Cite

Measuring health-related quality of life in adolescent and young adult cancer survivors with the National Institutes of Health Patient-Reported Outcomes Measurement Information System® : Comparing adolescent, emerging adult, and young adult survivor perspectives.

Journal article Psychooncology · March 2021 OBJECTIVE: Our knowledge of symptom burden and functioning among adolescent and young adult (AYA; diagnosed ages 15-39) cancer survivors has been hindered by variability in health-related quality of life (HRQOL) measurement associated with developmental an ... Full text Link to item Cite

Considerations to Support Use of Patient-Reported Outcomes Measurement Information System Pediatric Measures in Ambulatory Clinics.

Journal article J Pediatr · March 2021 OBJECTIVE: To identify challenges to the use of Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures in the ambulatory pediatric setting and possible solutions to these challenges. STUDY DESIGN: Eighteen semistructured telep ... Full text Link to item Cite

Responsiveness of the Patient-reported Outcomes Measurement Information System (PROMIS) Pediatric Measures to Changes in Disease Status and Quality of Life Among Children and Adolescents With Crohn's Disease.

Journal article Inflamm Bowel Dis · February 16, 2021 BACKGROUND: PROMIS Pediatric domains provide self-reported measures of physical, emotional, and social health in children with chronic conditions. We evaluated the responsiveness of the PROMIS Pediatric measures to changes in disease activity and disease-s ... Full text Link to item Cite

Composite grading algorithm for the National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

Journal article Clin Trials · February 2021 BACKGROUND: The Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events is an item library designed for eliciting patient-reported adverse events in oncology. For each adverse event, up to three individual items are scored f ... Full text Link to item Cite

Feasibility and delivery of patient-reported outcomes in clinical practice among racially diverse bladder and prostate cancer patients.

Journal article Urol Oncol · January 2021 OBJECTIVE: To assess the feasibility of enrollment and collecting patient-reported outcome (PRO) data as part of routine clinical urologic care for bladder and prostate cancer patients and examine overall patterns and racial variations in PRO use and sympt ... Full text Link to item Cite

International guidance on the selection of patient-reported outcome measures in clinical trials: a review.

Journal article Qual Life Res · January 2021 PURPOSE: Patient-reported outcomes (PROs) are increasingly used in clinical trials to provide patients' perspectives regarding symptoms, health-related quality of life, and satisfaction with treatments. A range of guidance documents exist for the selection ... Full text Link to item Cite

Pulmonary hypertension due to interstitial lung disease or chronic obstructive pulmonary disease: a patient experience study of symptoms and their impact on quality of life.

Journal article Pulm Circ · 2021 Pulmonary hypertension resulting from chronic lung disease such as chronic obstructive pulmonary disease and interstitial lung disease is categorized by the World Health Organization as Group 3 pulmonary hypertension. To identify the symptoms and impacts o ... Full text Link to item Cite

Reporting and utilization of Patient-Reported Outcomes Measurement Information System® (PROMIS®) measures in orthopedic research and practice: a systematic review.

Journal article J Orthop Surg Res · November 23, 2020 BACKGROUND: The Patient-Reported Outcomes Measurement Information SystemⓇ (PROMISⓇ) is a dynamic system of psychometrically sound patient-reported outcome (PRO) measures. There has been a recent increase in the use of PROMIS measures, yet little has been w ... Full text Open Access Link to item Cite

Optimizing the measurement of health-related quality of life in adolescents and young adults with cancer.

Journal article Cancer · November 15, 2020 Full text Link to item Cite

Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events.

Journal article J Natl Cancer Inst · November 1, 2020 BACKGROUND: Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric oncology trials. We evaluated construct validity, responsiveness, ... Full text Link to item Cite

Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment.

Journal article JAMA Pediatr · November 1, 2020 IMPORTANCE: Adult patients are considered the best reporters of their own health-related quality of life (HRQOL). Self-report in pediatrics has been challenged by a limited array of valid measures. Caregiver report is therefore often used as a proxy for ch ... Full text Link to item Cite

Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study.

Journal article Kidney Int Rep · October 2020 INTRODUCTION: Prior cross-sectional studies suggest that health-related quality of life (HRQOL) worsens with more severe glomerular disease. This longitudinal analysis was conducted to assess changes in HRQOL with changing disease status. METHODS: Cure Glo ... Full text Link to item Cite

Clinical Utility and User Perceptions of a Digital System for Electronic Patient-Reported Symptom Monitoring During Routine Cancer Care: Findings From the PRO-TECT Trial.

Journal article JCO Clin Cancer Inform · October 2020 PURPOSE: There is increasing interest in implementing digital systems for remote monitoring of patients' symptoms during routine oncology practice. Information is limited about the clinical utility and user perceptions of these systems. METHODS: PRO-TECT i ... Full text Link to item Cite

Identifying clinically meaningful severity categories for PROMIS pediatric measures of anxiety, mobility, fatigue, and depressive symptoms in juvenile idiopathic arthritis and childhood-onset systemic lupus erythematosus.

Journal article Qual Life Res · September 2020 PURPOSE: A key limitation to widespread adoption of patient-reported outcome (PRO) measures is the lack of interpretability of scores. We aim to identify clinical severity thresholds to distinguish categories of no problems, mild, moderate, and severe alon ... Full text Link to item Cite

Measuring Health-Related Quality of Life in Pediatric Neurology.

Journal article J Child Neurol · September 2020 Health-related quality of life (HRQOL) is central to how clinicians and parents make choices about medical care for pediatric neurology patients. To provide parents with the information they need to make these decisions and plan for the future, it is neces ... Full text Link to item Cite

Multicenter Validation of an Emergency Department-Based Screening Tool to Identify Elder Abuse.

Journal article Ann Emerg Med · September 2020 STUDY OBJECTIVE: Emergency department (ED) visits provide an important opportunity for elder abuse identification. Our objective was to assess the accuracy of the ED Senior Abuse Identification (ED Senior AID) tool for the identification of elder abuse. ME ... Full text Link to item Cite

Congruence of patient- and clinician-reported toxicity in women receiving chemotherapy for early breast cancer.

Journal article Cancer · July 1, 2020 BACKGROUND: The National Cancer Institute's Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, collected alongside the clinician-reported Common Terminology Criteria for Adverse Events, enables comparisons of patient a ... Full text Open Access Link to item Cite

Medication Non-adherence in a Prospective, Multi-center Cohort Treated with Hepatitis C Direct-Acting Antivirals.

Journal article J Gen Intern Med · April 2020 BACKGROUND: The prevalence and risk factors for non-adherence to direct-acting antivirals (DAAs) for chronic hepatitis C virus (HCV) in clinical practice settings are under-studied. OBJECTIVES: (1) To quantify DAA non-adherence in the total cohort and amon ... Full text Link to item Cite

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment.

Journal article Pediatr Blood Cancer · April 2020 BACKGROUND: The Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures were designed to assess symptoms and functioning in children and adolescents. The study goal was to evaluate the validity and responsiveness of the PROMIS ... Full text Link to item Cite

Factors Associated with Endocrine Therapy Non-Adherence in Breast Cancer Survivors.

Journal article Psychooncology · April 2020 BACKGROUND: For women with hormone receptor positive breast cancer, long-term endocrine therapy (ET) can greatly reduce the risk of recurrence, yet adherence is low- particularly among traditionally underserved populations. METHODS: The Carolina Breast Can ... Full text Link to item Cite

The need for a Serious Illness Digital Ecosystem (SIDE) to improve outcomes for patients receiving palliative and hospice care.

Journal article Am J Manag Care · April 2020 Palliative and hospice care services produce immense benefits for patients living with serious illness and for their families. Due to the national shift toward value-based payment models, health systems and payers share a heightened awareness of the need t ... Full text Open Access Link to item Cite

Reply to: "Patient-reported symptoms during direct-acting antiviral treatment: A real-life study in HIV-HCV coinfected patients (ANRS CO13 HEPAVIH)".

Journal article J Hepatol · March 2020 Full text Link to item Cite

Performance Measures Based on How Adults With Cancer Feel and Function: Stakeholder Recommendations and Feasibility Testing in Six Cancer Centers.

Journal article JCO Oncol Pract · March 2020 PURPOSE: Patient-reported outcome measures (PROMs) that assess how patients feel and function have potential for evaluating quality of care. Stakeholder recommendations for PRO-based performance measures (PMs) were elicited, and feasibility testing was con ... Full text Link to item Cite

Ability of Older Adults to Report Elder Abuse: An Emergency Department-Based Cross-Sectional Study.

Journal article J Am Geriatr Soc · January 2020 OBJECTIVES: To characterize assessments of a patient's ability to report elder abuse within the context of an emergency department (ED)-based screen for elder abuse. DESIGN: Cross-sectional study in which participants were screened for elder abuse and negl ... Full text Link to item Cite

Patient-clinician interactions and disparities in breast cancer care: the equality in breast cancer care study.

Journal article J Cancer Surviv · December 2019 PURPOSE: To examine whether interpersonal aspects of patient-clinician interactions, such as patient-perceived medical discrimination, clinician mistrust, and treatment decision-making contribute to racial/ethnic/educational disparities in breast cancer ca ... Full text Link to item Cite

Content Validity and Reliability of a Self-Report Measure of Medication Nonadherence in Hepatitis C Treatment.

Journal article Dig Dis Sci · October 2019 BACKGROUND: Nonadherence to direct-acting agents (DAAs) for hepatitis C (HCV) decreases viral response. To measure nonadherence to DAAs, a reliable, valid, and easily implemented method is needed. AIMS: The goals of this study were to refine a previously v ... Full text Link to item Cite

Patient-reported and clinician-reported chemotherapy-induced peripheral neuropathy in patients with early breast cancer: Current clinical practice.

Journal article Cancer · September 1, 2019 BACKGROUND: In the current study, the authors investigated the incidence of moderate to severe chemotherapy-induced peripheral neuropathy (CIPN) for chemotherapy regimens commonly used in current clinical practice for the treatment of patients with early b ... Full text Link to item Cite

Patient-reported symptoms during and after direct-acting antiviral therapies for chronic hepatitis C: The PROP UP study.

Journal article J Hepatol · September 2019 BACKGROUND & AIMS: A comprehensive analysis of changes in symptoms and functioning during and after direct-acting antiviral (DAA) therapy for chronic hepatitis C virus (HCV) infection has not been conducted for patients treated in real-world clinical setti ... Full text Link to item Cite

State of the psychometric methods: patient-reported outcome measure development and refinement using item response theory.

Journal article J Patient Rep Outcomes · July 30, 2019 BACKGROUND: This paper is part of a series comparing different psychometric approaches to evaluate patient-reported outcome (PRO) measures using the same items and dataset. We provide an overview and example application to demonstrate 1) using item respons ... Full text Open Access Link to item Cite

Frailty and health-related quality of life in older women with breast cancer.

Journal article Support Care Cancer · July 2019 PURPOSE: In older women, breast cancer and its treatment can have profound impact on their physical, mental, and social health, especially in frail patients. This study evaluated the association between frailty and long-term health-related quality of life ... Full text Link to item Cite

The association of age, literacy, and race on completing patient-reported outcome measures in pediatric oncology.

Journal article Qual Life Res · July 2019 PURPOSE: Age is often used to determine when children can begin completing patient-reported outcome (PRO) instruments or transition to adult instruments. This study's purpose was to determine relationships between literacy, age, and race and their influenc ... Full text Link to item Cite

The role of psychological safety and learning behavior in the development of effective quality improvement teams in Ghana: an observational study.

Journal article BMC Health Serv Res · June 14, 2019 BACKGROUND: As lower-income countries look to develop a mature healthcare workforce and to improve quality and reduce costs, they are increasingly turning to quality improvement (QI), a widely-used strategy in higher-income countries. Although QI is an eff ... Full text Link to item Cite

Patient-Reported Toxicities During Chemotherapy Regimens in Current Clinical Practice for Early Breast Cancer.

Journal article Oncologist · June 2019 BACKGROUND: This study explores the incidence of patient-reported major toxicity-symptoms rated "moderate," "severe," or "very severe"-for chemotherapy regimens commonly used in early breast cancer. PATIENTS AND METHODS: Female patients aged 21 years or ol ... Full text Link to item Cite

Helping the Demand Find the Supply: Messaging the Value of Specialty Palliative Care Directly to Those With Serious Illnesses.

Journal article J Pain Symptom Manage · June 2019 Full text Open Access Link to item Cite

Determining a transitional scoring link between PROMIS® pediatric and adult physical health measures.

Journal article Qual Life Res · May 2019 PURPOSE: Having independent versions of the PROMIS® scales (for Pediatric and Adults) is problematic as scores cannot be evaluated longitudinally as individuals move from childhood into adulthood. The primary aim of this research project is to use item res ... Full text Link to item Cite

Health-related quality of life in glomerular disease.

Journal article Kidney Int · May 2019 There is scant literature describing the effect of glomerular disease on health-related quality of life (HRQOL). The Cure Glomerulonephropathy study (CureGN) is an international longitudinal cohort study of children and adults with four primary glomerular ... Full text Link to item Cite

PROMIS® Adult Health Profiles: Efficient Short-Form Measures of Seven Health Domains.

Journal article Value Health · May 2019 BACKGROUND: There is a need for valid self-report measures of core health-related quality of life (HRQoL) domains. OBJECTIVE: To derive brief, reliable and valid health profile measures from the Patient Reported Outcomes Measurement Information System® (PR ... Full text Link to item Cite

PRO-Bookmarking to Estimate Clinical Thresholds for Patient-reported Symptoms and Function.

Journal article Med Care · May 2019 INTRODUCTION: PRO-Bookmarking is an alternative to traditional methods for deriving cut scores and applying qualitative modifiers to score ranges. METHODS: In PRO-Bookmarking, a working group of stakeholders identifies ranges of scores they judge to credib ... Full text Link to item Cite

Older Adults with Cancer: A Randomized Controlled Trial of Occupational and Physical Therapy.

Journal article J Am Geriatr Soc · May 2019 OBJECTIVES: The impact of occupational therapy (OT) and physical therapy (PT) on functional outcomes in older adults with cancer is unknown. DESIGN: Two-arm single-institution randomized controlled trial of outpatient OT/PT. SETTING: Comprehensive cancer c ... Full text Link to item Cite

Using PROMIS® to create clinically meaningful profiles of nephrotic syndrome patients.

Journal article Health Psychol · May 2019 OBJECTIVE: Nephrotic syndrome (NS) is a kidney disease known to adversely impact health-related quality of life (HRQOL). Patient-reported outcome (PRO) measures are commonly used to characterize HRQOL and the patient disease experience. This study aims to ... Full text Link to item Cite

Co-occurring reasons for medication nonadherence within subgroups of patients with hyperlipidemia.

Journal article J Behav Med · April 2019 Medication nonadherence is a significant clinical problem among individuals taking statins. Poor adherence is often attributable to several reasons, yet most adherence interventions target a single reason. Baseline data were examined from a randomized clin ... Full text Open Access Link to item Cite

Adaptation of the Possibilities for Activity Scale for women encountering cancer (PActS-W).

Journal article Aust Occup Ther J · April 2019 BACKGROUND/AIM: The original Possibilities for Activity Scale (PActS) examined the internalised societal pressures of older adults with cancer. Previous research found that scores from the original PActS scale were associated with participation in meaningf ... Full text Link to item Cite

Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community.

Journal article Osteoporos Int · February 2019 UNLABELLED: There is limited research which examines health concerns of individuals with osteogenesis imperfecta (OI). Discussion groups with leaders of the adult OI community identified a broad range of medical priorities beyond fractures and brittle bone ... Full text Link to item Cite

CureGN Study Rationale, Design, and Methods: Establishing a Large Prospective Observational Study of Glomerular Disease.

Journal article Am J Kidney Dis · February 2019 RATIONALE & OBJECTIVES: Glomerular diseases, including minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, and immunoglobulin A (IgA) nephropathy, share clinical presentations, yet result from multiple biological mechanisms. ... Full text Link to item Cite

Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data.

Journal article Qual Life Res · February 2019 PURPOSE: Patient-reported outcomes (PROs) can promote patient-centered care in multiple ways: (1) using an individual patient's PRO data to inform his/her management, (2) providing PRO results from comparative research studies in patient educational materi ... Full text Link to item Cite

Developing and Implementing Performance Outcome Assessments: Evidentiary, Methodologic, and Operational Considerations.

Journal article Ther Innov Regul Sci · January 2019 The use of performance outcome (PerfO) assessments to measure cognitive or physical function in drug trials presents several challenges for both sponsors and regulators, owing in part to a relative lack of scientific guidance on their development, implemen ... Full text Link to item Cite

Patient-reported outcome monitoring in a routine paediatric oncology setting: challenges and opportunities.

Journal article Lancet Oncol · January 2019 Full text Link to item Cite

Application of a Bayesian graded response model to characterize areas of disagreement between clinician and patient grading of symptomatic adverse events.

Journal article J Patient Rep Outcomes · December 4, 2018 BACKGROUND: Traditional concordance metrics have shortcomings based on dataset characteristics (e.g., multiple attributes rated, missing data); therefore it is necessary to explore supplemental approaches to quantifying agreement between independent assess ... Full text Link to item Cite

Investigating the prognostic ability of health-related quality of life on survival: a prospective cohort study of adults with lung cancer.

Journal article Support Care Cancer · November 2018 BACKGROUND: Health-related quality of life (HRQOL) is an important predictor for overall survival (OS). To date, no studies compared associations between HRQOL assessed before and after a cancer diagnosis for OS. Our objectives were to (1) investigate asso ... Full text Link to item Cite

Translation, psychometric validation, and baseline results of the Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric measures to assess health-related quality of life of patients with pediatric lymphoma in Malawi.

Journal article Pediatr Blood Cancer · November 2018 INTRODUCTION: Internationally validated tools to measure patient-reported health-related quality of life (HRQoL) are available, but efforts to translate and culturally validate such tools in sub-Saharan Africa (SSA) are scarce, particularly among children. ... Full text Link to item Cite

Feasibility of Implementing the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events in a Multicenter Trial: NCCTG N1048.

Journal article J Clin Oncol · September 11, 2018 Purpose The US National Cancer Institute (NCI) Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) was developed to enable patient reporting of symptomatic adverse events in oncology clinical research. This s ... Full text Link to item Cite

Factors affecting the communication experiences of newly diagnosed colorectal cancer patients.

Journal article Patient Educ Couns · September 2018 OBJECTIVE: This study assessed patient-centered communication (PCC) among newly diagnosed colorectal cancer patients. PCC, a key part of patient-centered care, contributes directly and indirectly to health-related quality of life, satisfaction with care, a ... Full text Link to item Cite

Symptoms, Mobility and Function, and Quality of Life in Adults With Acute Leukemia During Initial Hospitalization.

Journal article Oncol Nurs Forum · September 1, 2018 OBJECTIVES: To examine longitudinal symptoms, mobility and function, and quality of life (QOL) in adults newly diagnosed with acute leukemia. SAMPLE & SETTING: 55 adults undergoing induction chemotherapy at the University of North Carolina Lineberger Compr ... Full text Link to item Cite

Age and African-American race impact the validity and reliability of the asthma control test in persistent asthmatics.

Journal article Respir Res · August 15, 2018 BACKGROUND: The Asthma Control Test (ACT) is widely used to assess asthma control, yet the validity and reliability of the test have not been specifically evaluated in adolescents or African-Americans. We conducted a prospective psychometric study of the A ... Full text Link to item Cite

Relationship between sleep and exercise as colorectal cancer survivors transition off treatment.

Journal article Support Care Cancer · August 2018 PURPOSE: The primary objective of this study was to evaluate the relationship between exercise and sleep disturbance in a sample of individuals diagnosed with stage I, II, and III colorectal cancer (CRC) as patients transitioned off first-line treatment. W ... Full text Open Access Link to item Cite

Quality of life as a prognostic indicator of survival: A pooled analysis of individual patient data from canadian cancer trials group clinical trials.

Journal article Cancer · August 2018 BACKGROUND: The aims of this study were to externally validate an established association between baseline health-related quality of life (HRQOL) scores and survival and to assess the added prognostic value of HRQOL with respect to demographic and clinical ... Full text Link to item Cite

Software for Administering the National Cancer Institute's Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events: Usability Study.

Journal article JMIR Hum Factors · July 16, 2018 BACKGROUND: The US National Cancer Institute (NCI) developed software to gather symptomatic adverse events directly from patients participating in clinical trials. The software administers surveys to patients using items from the Patient-Reported Outcomes ... Full text Link to item Cite

Symptom and function profiles of men with localized prostate cancer.

Journal article Cancer · July 1, 2018 BACKGROUND: Men diagnosed with localized prostate cancer seek information on how treatment options may impact their health-related quality of life (HRQOL). The authors used latent profile analysis (LPA) to group men according to their symptom burden and fu ... Full text Link to item Cite

The Effects of Exercise on Patient-Reported Outcomes and Performance-Based Physical Function in Adults With Acute Leukemia Undergoing Induction Therapy: Exercise and Quality of Life in Acute Leukemia (EQUAL).

Journal article Integr Cancer Ther · June 2018 INTRODUCTION: Fatigue is a distressing symptom for adults with acute leukemia, often impeding their ability to exercise. OBJECTIVES: 1) Examine effects of a 4-week mixed-modality supervised exercise program (4 times a week, twice a day) on fatigue in adult ... Full text Link to item Cite

Impact of bladder cancer on health-related quality of life.

Journal article BJU Int · April 2018 OBJECTIVES: To identify changes in health-related quality of life (HRQoL) after diagnosis of bladder cancer in older adults in comparison with a group of adults without bladder cancer (controls). PATIENTS AND METHODS: Data from the Surveillance, Epidemiolo ... Full text Link to item Cite

Psychometric properties of the PROMIS short form measures in a U.S. cohort of 961 patients with chronic hepatitis C prescribed direct acting antiviral therapy.

Journal article Aliment Pharmacol Ther · April 2018 BACKGROUND: To better understand symptoms experienced by patients infected with chronic hepatitis C virus (HCV), valid and reliable patient-reported outcome (PRO) measures are needed. AIM: To assess the reliability and validity of 10 patient-reported outco ... Full text Link to item Cite

Prostate Cancer Patient Characteristics Associated With a Strong Preference to Preserve Sexual Function and Receipt of Active Surveillance.

Journal article J Natl Cancer Inst · April 1, 2018 BACKGROUND: Men with early-stage prostate cancer have multiple options that have similar oncologic efficacy but vary in terms of their impact on quality of life. In low-risk cancer, active surveillance is the option that best preserves patients' sexual fun ... Full text Link to item Cite

Sleep quality in individuals diagnosed with colorectal cancer: Factors associated with sleep disturbance as patients transition off treatment.

Journal article Psychooncology · March 2018 OBJECTIVE: To identify patient characteristics associated with sleep disturbance and worsening of sleep in individuals diagnosed with localized colorectal cancer and assess heterogeneity in these relationships. METHODS: Data were from the MY-Health study, ... Full text Link to item Cite

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review.

Journal article Qual Life Res · February 2018 OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report ... Full text Link to item Cite

Presenting comparative study PRO results to clinicians and researchers: beyond the eye of the beholder.

Journal article Qual Life Res · January 2018 PURPOSE: Patient-reported outcome (PRO) results from clinical trials can inform clinical care, but PRO interpretation is challenging. We evaluated the interpretation accuracy and perceived clarity of various strategies for displaying clinical trial PRO fin ... Full text Link to item Cite

Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease.

Journal article Qual Life Res · January 2018 PURPOSE: Previous studies provided evidence for the validity of the PROMIS Pediatric measures in cross-sectional studies. This study evaluated the ability of the PROMIS Pediatric measures to detect change over time in children and adolescents with cancer, ... Full text Link to item Cite

Therapy Caps and Variation in Cost of Outpatient Occupational Therapy by Provider, Insurance Status, and Geographic Region.

Journal article Am J Occup Ther · 2018 OBJECTIVE: This article describes the cost of occupational therapy by provider, insurance status, and geographic region and the number of visits allowed and out-of-pocket costs under proposed therapy caps. METHOD: This retrospective, population-based study ... Full text Link to item Cite

Development of the Emergency Department Senior Abuse Identification (ED Senior AID) tool.

Journal article J Elder Abuse Negl · 2018 Emergency departments (EDs) are an important health care setting for the identification of elder abuse (EA). Our objective was to develop an ED-based tool to identify EA. The initial tool included a brief cognitive assessment, questions to detect multiple ... Full text Link to item Cite

A comprehensive assessment of patient reported symptom burden, medical comorbidities, and functional well being in patients initiating direct acting antiviral therapy for chronic hepatitis C: Results from a large US multi-center observational study.

Journal article PLoS One · 2018 BACKGROUND: Symptom burden, medical comorbidities, and functional well-being of patients with chronic hepatitis C virus (HCV) initiating direct acting antiviral (DAA) therapy in real-world clinical settings are not known. We characterized these patient-rep ... Full text Open Access Link to item Cite

Association of consistently suboptimal quality of life with consistently poor asthma control in children with asthma.

Journal article Ann Allergy Asthma Immunol · December 2017 Full text Link to item Cite

Evaluating measurement invariance across assessment modes of phone interview and computer self-administered survey for the PROMIS measures in a population-based cohort of localized prostate cancer survivors.

Journal article Qual Life Res · November 2017 PURPOSE: To evaluate measurement invariance (phone interview vs computer self-administered survey) of 15 PROMIS measures responded by a population-based cohort of localized prostate cancer survivors. METHODS: Participants were part of the North Carolina Pr ... Full text Link to item Cite

Patient perspectives on physical function after allogeneic hematopoietic stem cell transplantation: a qualitative study.

Journal article Bone Marrow Transplant · October 2017 Full text Link to item Cite

Breast cancer knowledge, behaviors, and preferences in Malawi: implications for early detection interventions from a discrete choice experiment

Journal article Journal of Global Oncology · October 1, 2017 Purpose Breast cancer is the most common female cancer in Africa and leading cause of death resulting from cancer; however, many countries lack early detection services. In Malawi, women are frequently diagnosed with large tumors after long symptomatic per ... Full text Cite

Responsiveness of the PROMIS® measures to changes in disease status among pediatric nephrotic syndrome patients: a Midwest pediatric nephrology consortium study.

Journal article Health Qual Life Outcomes · August 23, 2017 BACKGROUND: Nephrotic syndrome represents a condition in pediatric nephrology typified by a relapsing and remitting course, proteinuria and the presence of edema. The PROMIS measures have previously been studied and validated in cross-sectional studies of ... Full text Open Access Link to item Cite

Comparison of Patient Report and Medical Records of Comorbidities: Results From a Population-Based Cohort of Patients With Prostate Cancer.

Journal article JAMA Oncol · August 1, 2017 IMPORTANCE: The comorbid conditions of patients with cancer affect treatment decisions, which in turn affect survival and health-related quality-of-life outcomes. Comparative effectiveness research studies must account for these conditions via medical reco ... Full text Link to item Cite

Geriatric Assessment as a Predictor of Tolerance, Quality of Life, and Outcomes in Older Patients With Head and Neck Cancers and Lung Cancers Receiving Radiation Therapy.

Journal article Int J Radiat Oncol Biol Phys · July 15, 2017 PURPOSE: To evaluate the association between functional status based on a geriatric assessment (GA) and outcomes of tolerance to treatment in patients with lung or head and neck cancer receiving radiation therapy (RT) or chemoradiation (CRT). METHODS AND M ... Full text Link to item Cite

Psychometric evaluation and design of patient-centered communication measures for cancer care settings.

Journal article Patient Educ Couns · July 2017 OBJECTIVE: To evaluate the psychometric properties of questions that assess patient perceptions of patient-provider communication and design measures of patient-centered communication (PCC). METHODS: Participants (adults with colon or rectal cancer living ... Full text Link to item Cite

Activities, function, and health-related quality of life (HRQOL) of older adults with cancer.

Journal article J Geriatr Oncol · July 2017 OBJECTIVE: This study aims to (1) describe the activities, function, and health-related quality of life (HRQOL) of a large sample of older adults (age ≥65) with cancer, (2) identify the associations with demographics, cancer type, comorbid conditions, and ... Full text Link to item Cite

Examining health-related quality of life patterns in women with breast cancer.

Journal article Qual Life Res · July 2017 PURPOSE: We aimed to identify subgroups of women with breast cancer who experience different health-related quality of life (HRQOL) patterns during active treatment and survivorship and determine characteristics associated with subgroup membership. METHODS ... Full text Link to item Cite

The prognostic value of pre-diagnosis health-related quality of life on survival: a prospective cohort study of older Americans with lung cancer.

Journal article Qual Life Res · July 2017 PURPOSE: Health-related quality of life (HRQOL) after cancer diagnosis is prognostic for overall survival (OS). However, no studies have assessed if HRQOL before diagnosis is predictive for OS. The objective of this study was to determine the association b ... Full text Link to item Cite

United States Population-Based Estimates of Patient-Reported Outcomes Measurement Information System Symptom and Functional Status Reference Values for Individuals With Cancer.

Journal article J Clin Oncol · June 10, 2017 Purpose To estimate cancer population-based reference values in the United States for eight PROMIS (Patient-Reported Outcomes Measurement Information System) domains by age and stage of disease. Patients and Methods For the Measuring Your Health (MY-Health ... Full text Link to item Cite

Evaluation of different recall periods for the US National Cancer Institute's PRO-CTCAE.

Journal article Clin Trials · June 2017 AIMS: The US National Cancer Institute recently developed the PRO-CTCAE (Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events). PRO-CTCAE is a library of questions for clinical trial participants to self-report symptomati ... Full text Link to item Cite

Patient engagement and study design of PROP UP: A multi-site patient-centered prospective observational study of patients undergoing hepatitis C treatment.

Journal article Contemp Clin Trials · June 2017 BACKGROUND: New highly efficacious direct-acting antiviral (DAA) therapies are available to treat chronic hepatitis C viral (HCV) infection. Real-world, patient-centered data on harms and benefits associated with these therapies are needed. METHODS: PROP U ... Full text Link to item Cite

What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability.

Journal article Cancer · May 15, 2017 BACKGROUND: Patient-reported outcomes (PROs) (eg, symptoms, functioning) can inform patient management. However, patients and clinicians often have difficulty interpreting score meaning. The authors tested approaches for presenting PRO data to improve inte ... Full text Link to item Cite

Investigating Associations Between Health-Related Quality of Life and Endocrine Therapy Underuse in Women With Early-Stage Breast Cancer.

Journal article J Oncol Pract · May 2017 PURPOSE: Endocrine therapy (ET) underuse puts women at increased risk for breast cancer (BC) recurrence. Our objective was to determine if health-related quality of life (HRQOL) subgroups were associated with underuse. METHODS: Data came from the third pha ... Full text Link to item Cite

Cognitive Interview-Based Validation of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events in Adolescents with Cancer.

Journal article J Pain Symptom Manage · April 2017 CONTEXT: The National Cancer Institute created the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) to allow direct input on symptomatic adverse events (AEs) from adult patients in oncology trials. OBJECTI ... Full text Link to item Cite

Association Between Choice of Radical Prostatectomy, External Beam Radiotherapy, Brachytherapy, or Active Surveillance and Patient-Reported Quality of Life Among Men With Localized Prostate Cancer.

Journal article JAMA · March 21, 2017 IMPORTANCE: Patients diagnosed with localized prostate cancer have to decide among treatment strategies that may differ in their likelihood of adverse effects. OBJECTIVE: To compare quality of life (QOL) after radical prostatectomy, external beam radiother ... Full text Link to item Cite

Determinants of longitudinal health-related quality-of-life change in children with asthma from low-income families: a report from the PROMIS® Pediatric Asthma Study.

Journal article Clin Exp Allergy · March 2017 BACKGROUND: How the longitudinal asthma control status and other socio-demographic factors influence the changes of health-related quality of life (HRQOL) among asthmatic children, especially from low-income families, has not been fully investigated. OBJEC ... Full text Link to item Cite

Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative.

Journal article Pediatr Blood Cancer · March 2017 BACKGROUND: Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child's voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) i ... Full text Link to item Cite

Content validity of symptom-based measures for diabetic, chemotherapy, and HIV peripheral neuropathy.

Journal article Muscle Nerve · March 2017 INTRODUCTION: No treatments for axonal peripheral neuropathy are approved by the United States Food and Drug Administration (FDA). Although patient- and clinician-reported outcomes are central to evaluating neuropathy symptoms, they can be difficult to ass ... Full text Link to item Cite

Use of the SF-36v2 Health Survey as a Screen for Risk of Major Depressive Disorder in a US Population-based Sample and Subgroup With Chronic Pain.

Journal article Med Care · February 2017 STUDY OBJECTIVES: To assess the feasibility of using the SF-36v2 mental health (MH) and mental component summary (MCS) scores for classification of risk for major depressive disorder (MDD), and to determine cut-off scores based on the sensitivity and speci ... Full text Link to item Cite

Pre-diagnosis health-related quality of life, surgery, and survival in women with advanced epithelial ovarian cancer: A SEER-MHOS study.

Journal article Gynecol Oncol · February 2017 OBJECTIVE: Health-related quality of life (HRQOL) has been found to be associated with overall survival in women with ovarian cancer. However, previous studies assessed HRQOL after surgery within clinical trial populations only. The study goal was to deter ... Full text Link to item Cite

Engaging Patient Advocates and Other Stakeholders to Design Measures of Patient-Centered Communication in Cancer Care.

Journal article Patient · February 2017 BACKGROUND: Patient-centered communication (PCC) is an essential component of patient-centered care and contributes to patient satisfaction, health-related quality of life, and other important patient outcomes. OBJECTIVE: The aim of this study was to devel ... Full text Link to item Cite

The challenge of measuring intra-individual change in fatigue during cancer treatment.

Journal article Qual Life Res · February 2017 PURPOSE: To evaluate how well three different patient-reported outcomes (PROs) measure individual change. METHODS: Two hundred and fourteen patients (from two sites) initiating first or new chemotherapy for any stage of breast or gastrointestinal cancer pa ... Full text Link to item Cite

A framework for improving early detection of breast cancer in sub-Saharan Africa: A qualitative study of help-seeking behaviors among Malawian women.

Journal article Patient education and counseling · January 2017 ObjectiveMany women in Africa are diagnosed with advanced breast cancer. We explored Malawian breast cancer patients' perspectives about their diagnosis and ability to access care to identify help-seeking behaviors and to describe factors influenc ... Full text Cite

Psychometric Properties of the Four-Item Morisky Green Levine Medication Adherence Scale among Atherosclerosis Risk in Communities (ARIC) Study Participants.

Journal article Value Health · December 2016 OBJECTIVES: To evaluate the reliability and factorial validity of the four-item Morisky Green Levine Medication Adherence Scale (MGLS) among Atherosclerosis Risk in Communities (ARIC) Study participants. METHODS: We used the cross-sectional visit 5 data fr ... Full text Link to item Cite

Factors that impact health-related quality of life over time for individuals with head and neck cancer.

Journal article Laryngoscope · December 2016 OBJECTIVES/HYPOTHESIS: To identify sociodemographic, behavioral, and clinical factors associated with health-related quality of life (HRQOL) for head and neck cancer (HNC) patients over time. STUDY DESIGN: A population-based longitudinal cohort study. METH ... Full text Link to item Cite

Sexual Satisfaction and the Importance of Sexual Health to Quality of Life Throughout the Life Course of U.S. Adults.

Journal article J Sex Med · November 2016 INTRODUCTION: Discussions about sexual health are uncommon in clinical encounters, despite the sexual dysfunction associated with many common health conditions. Understanding of the importance of sexual health and sexual satisfaction in U.S. adults is limi ... Full text Link to item Cite

Reliability and validity of PROMIS measures administered by telephone interview in a longitudinal localized prostate cancer study.

Journal article Qual Life Res · November 2016 PURPOSE: To evaluate the reliability and validity of six PROMIS measures (anxiety, depression, fatigue, pain interference, physical function, and sleep disturbance) telephone-administered to a diverse, population-based cohort of localized prostate cancer p ... Full text Link to item Cite

Understanding racial differences in health-related quality of life in a population-based cohort of breast cancer survivors.

Journal article Breast Cancer Res Treat · October 2016 PURPOSE: Although racial disparities in health-related quality of life (HRQOL) among women with breast cancer (BC) are well documented, less is known about HRQOL changes over time among women of different races. Our objective was to assess racial differenc ... Full text Link to item Cite

Personalized home-based interval exercise training may improve cardiorespiratory fitness in cancer patients preparing to undergo hematopoietic cell transplantation.

Journal article Bone Marrow Transplant · July 2016 Impaired cardiorespiratory fitness is associated with inferior survival in patients preparing to undergo hematopoietic cell transplantation (HCT). Exercise training based on short, higher intensity intervals has the potential to efficiently improve cardior ... Full text Link to item Cite

Known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) in adolescents and young adults with special healthcare needs.

Journal article Qual Life Res · July 2016 PURPOSE: To examine known-groups validity of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) Short Forms (SFs) for adolescents and young adults with special healthcare needs (SHCN) using data collected from the PROMIS Linking Study ... Full text Link to item Cite

Mode effects between computer self-administration and telephone interviewer-administration of the PROMIS(®) pediatric measures, self- and proxy report.

Journal article Qual Life Res · July 2016 OBJECTIVE: To test equivalence of scores obtained with the PROMIS(®) pediatric Depressive Symptoms, Fatigue, and Mobility measures across two modes of administration: computer self-administration and telephone interviewer-administration. If mode effects ar ... Full text Link to item Cite

Is it my cancer or am i just getting older?: Impact of cancer on age-related health conditions of older cancer survivors.

Journal article Cancer · June 15, 2016 BACKGROUND: The extent to which cancer exacerbates or creates new health conditions is a long-standing, unanswered question. The current prospective study examined the short-term impact of cancer on the functioning, development of, and worsening of age-rel ... Full text Link to item Cite

Responsiveness of PROMIS® Pediatric Measures to Hospitalizations for Sickle Pain and Subsequent Recovery.

Journal article Pediatr Blood Cancer · June 2016 BACKGROUND: The Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®) ) created pediatric self-report scales measuring a variety of health attributes (domains), but their responsiveness to changes in health status has not yet been determin ... Full text Link to item Cite

Initial Evaluation of the Pediatric PROMIS® Health Domains in Children and Adolescents With Sickle Cell Disease.

Journal article Pediatr Blood Cancer · June 2016 BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS®) has developed pediatric self-report scales measuring several unidimensional health attributes (domains) suitable for use in clinical research, but these measures have not ye ... Full text Link to item Cite

Comparison of Patient- and Practitioner-Reported Toxic Effects Associated With Chemoradiotherapy for Head and Neck Cancer.

Journal article JAMA Otolaryngol Head Neck Surg · June 1, 2016 IMPORTANCE: Agreement between patient- and practitioner-reported toxic effects during chemoradiotherapy for head and neck cancer is unknown. OBJECTIVE: To compare patient-reported symptom severity and practitioner-reported toxic effects among patients rece ... Full text Link to item Cite

An item-level response shift study on the change of health state with the rating of asthma-specific quality of life: a report from the PROMIS(®) Pediatric Asthma Study.

Journal article Qual Life Res · June 2016 PURPOSE: To examine item-level response shift associated with the change in asthma-related health state (i.e., change in asthma control status and global rating of change (GRC) in breathing problems). METHODS: Study sample comprised 238 asthmatic children ... Full text Link to item Cite

Valuation of Child Health-Related Quality of Life in the United States.

Journal article Health Econ · June 2016 Many economic analyses fail to incorporate evidence on child health-related quality of life because of a paucity of quality-adjusted life year (QALY) estimates. This health valuation study is the first to summarize the EQ-5D-Y on a QALY scale. Drawn from a ... Full text Link to item Cite

PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions.

Journal article J Clin Epidemiol · May 2016 OBJECTIVE: To present an overview of a series of studies in which the clinical validity of the National Institutes of Health's Patient Reported Outcome Measurement Information System (NIH; PROMIS) measures was evaluated, by domain, across six clinical popu ... Full text Link to item Cite

The Added Value of Analyzing Pooled Health-Related Quality of Life Data: A Review of the EORTC PROBE Initiative.

Journal article J Natl Cancer Inst · May 2016 BACKGROUND: The European Organisation for Research and Treatment of Cancer (EORTC) Patient-Reported Outcomes and Behavioural Evidence (PROBE) initiative was established to investigate critical topics to better understand health-related quality of life (HRQ ... Full text Link to item Cite

PROMIS Fatigue Item Bank had Clinical Validity across Diverse Chronic Conditions.

Journal article J Clin Epidemiol · May 2016 OBJECTIVE: To evaluate the comparability and responsiveness of Patient-Reported Outcomes Measurement Information System (PROMIS) fatigue item bank across six chronic conditions. STUDY DESIGN AND SETTING: Individuals (n = 1,430) with chronic obstructive pul ... Full text Link to item Cite

Use of mobile device technology to continuously collect patient-reported symptoms during radiation therapy for head and neck cancer: A prospective feasibility study

Journal article Advances in Radiation Oncology · April 1, 2016 Purpose: Accurate assessment of toxicity allows for timely delivery of supportive measures during radiation therapy for head and neck cancer. The current paradigm requires weekly evaluation of patients by a provider. The purpose of this study is to evaluat ... Full text Cite

Fatigue in Patients with Chronic Hepatitis B Living in North America: Results from the Hepatitis B Research Network (HBRN).

Journal article Dig Dis Sci · April 2016 BACKGROUND: Fatigue is a common symptom of liver disease but not well characterized in patients with chronic hepatitis B virus (HBV). AIMS: We assessed the rate of fatigue using a validated instrument in patients with HBV and identified demographic, virolo ... Full text Link to item Cite

Longitudinal associations among asthma control, sleep problems, and health-related quality of life in children with asthma: a report from the PROMIS(®) Pediatric Asthma Study.

Journal article Sleep Med · April 2016 OBJECTIVES: Few studies have investigated the complex relationship among asthma control, sleep problems, and health-related quality of life (HRQOL) among children with asthma. This study aimed to test the longitudinal effect of asthma control status on ast ... Full text Link to item Cite

Linkage between the PROMIS® pediatric and adult emotional distress measures.

Journal article Qual Life Res · April 2016 PURPOSE: Research studies that measure health-related quality of life (HRQOL) in both children and adults and longitudinal studies that follow children into adulthood need measures that can be compared across these age groups. This study links the PROMIS p ... Full text Link to item Cite

Evaluation of pedometry as a patient-centered outcome in patients undergoing hematopoietic cell transplant (HCT): a comparison of pedometry and patient reports of symptoms, health, and quality of life.

Journal article Qual Life Res · March 2016 AIMS: We evaluated pedometry as a novel patient-centered outcome because it enables passive continuous assessment of activity and may provide information about the consequences of symptomatic toxicity complementary to self-report. METHODS: Adult patients u ... Full text Link to item Cite

Mode equivalence and acceptability of tablet computer-, interactive voice response system-, and paper-based administration of the U.S. National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

Journal article Health Qual Life Outcomes · February 19, 2016 BACKGROUND: PRO-CTCAE is a library of items that measure cancer treatment-related symptomatic adverse events (NCI Contracts: HHSN261201000043C and HHSN 261201000063C). The objective of this study is to examine the equivalence and acceptability of the three ... Full text Link to item Cite

International Society for Quality of Life Research commentary on the draft European Medicines Agency reflection paper on the use of patient-reported outcome (PRO) measures in oncology studies.

Journal article Qual Life Res · February 2016 In 2014, the European Medicines Agency (EMA) released for comment a draft reflection paper on the use of patient-reported outcome (PRO) measures in oncology studies. A twelve-member International Society for Quality of Life Research (ISOQOL) taskforce was ... Full text Link to item Cite

Valuation of Child Behavioral Problems from the Perspective of US Adults.

Journal article Med Decis Making · February 2016 OBJECTIVE: To assess preferences between child behavioral problems and estimate their value on a quality-adjusted life year (QALY) scale. METHODS: Respondents, age 18 or older, drawn from a nationally representative panel between August 2012 and February 2 ... Full text Link to item Cite

A Systematic Review of Psychometric Properties of Health-Related Quality-of-Life and Symptom Instruments in Adult Acute Leukemia Survivors.

Journal article Cancer Nurs · 2016 BACKGROUND: Acute leukemia represents 4% of cancer cases in the United States annually. There are more than 302 000 people living with acute and chronic leukemia in the United States. Treatment has been shown to have both positive and negative effects on h ... Full text Link to item Cite

The Performance and Association Between Patient-reported and Performance-based Measures of Physical Functioning in Research on Individuals with Arthritis.

Journal article J Rheumatol · January 2016 OBJECTIVE: To evaluate the association between patient-reported outcome (PRO) and performance-based (PB) measures of physical functioning (PF) among individuals with self-identified arthritis to inform decisions of which to use when evaluating the effectiv ... Full text Link to item Cite

Responsiveness to Change in PROMIS(®) Measures among Children with Asthma: A Report from the PROMIS(®) Pediatric Asthma Study.

Journal article Value Health · 2016 OBJECTIVE: To compare the responsiveness to change of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) asthma impact, pain interference, fatigue, depressive symptoms, mobility, and peer relationship scales to a legacy scale, the Pae ... Full text Link to item Cite

Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method.

Journal article Qual Life Res · January 2016 OBJECTIVE: To assess minimally important differences (MIDs) for several pediatric self-report item banks from the National Institutes of Health Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®)). METHODS: We presented vignettes compris ... Full text Link to item Cite

Concept-elicitation phase for the development of the pediatric patient-reported outcome version of the Common Terminology Criteria for Adverse Events.

Journal article Cancer · January 1, 2016 BACKGROUND: Symptoms arising from disease or treatment are subjective experiences. Insight into pediatric oncology treatment side effects or symptoms is ideally obtained from direct inquiry to the ill child. A concept-elicitation phase in a patient-reporte ... Full text Link to item Cite

Patterns of Chronic Conditions and Their Associations With Behaviors and Quality of Life, 2010.

Journal article Prev Chronic Dis · December 17, 2015 INTRODUCTION: Co-occurring chronic health conditions elevate the risk of poor health outcomes such as death and disability, are associated with poor quality of life, and magnify the complexities of self-management, care coordination, and treatment planning ... Full text Link to item Cite

The effects of age on health-related quality of life in cancer populations: A pooled analysis of randomized controlled trials using the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 involving 6024 cancer patients.

Journal article Eur J Cancer · December 2015 BACKGROUND: Cancer incidence increases exponentially with advancing age, cancer patients live longer than in the past, and many new treatments focus on stabilizing disease and HRQOL. The objective of this study is to examine how cancer affects patients' HR ... Full text Link to item Cite

Patient-Reported Outcome Instruments for Physical Symptoms Among Patients Receiving Maintenance Dialysis: A Systematic Review.

Journal article Am J Kidney Dis · December 2015 BACKGROUND: Patients with end-stage renal disease (ESRD) receiving dialysis have poor health-related quality of life. Physical symptoms are highly prevalent among dialysis-dependent patients and play important roles in health-related quality of life. A ran ... Full text Link to item Cite

Validity and Reliability of the US National Cancer Institute's Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

Journal article JAMA Oncol · November 2015 IMPORTANCE: To integrate the patient perspective into adverse event reporting, the National Cancer Institute developed a patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). OBJECTIVE: To assess the construct ... Full text Link to item Cite

Validation of the PROMIS physical function measures in a diverse US population-based cohort of cancer patients.

Journal article Qual Life Res · October 2015 PURPOSE: To evaluate the validity of the Patient-Reported Outcomes Measurement Information System (PROMIS) physical function measures in a diverse, population-based cancer sample. METHODS: Cancer patients 6-13 months post-diagnosis (n = 4840) were recruite ... Full text Link to item Cite

The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study.

Journal article Pediatr Nephrol · September 2015 BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the ... Full text Link to item Cite

Development and Initial Validation of the PROMIS(®) Sexual Function and Satisfaction Measures Version 2.0.

Journal article J Sex Med · September 2015 INTRODUCTION: The Patient-Reported Outcomes Measurement Information System (PROMIS)(®) Sexual Function and Satisfaction measure (SexFS) version 1.0 was developed with cancer populations. There is a need to expand the SexFS and provide evidence of its valid ... Full text Link to item Cite

A randomized controlled trial of outpatient CAncer REhabilitation for older adults: The CARE Program.

Journal article Contemp Clin Trials · September 2015 BACKGROUND: Large numbers of older adults (aged 65years or older) are surviving cancer; however, many survivors report decreased quality of life (QOL) and limitations in activities of daily living (ADL) and instrumental activities of daily living (IADL) bo ... Full text Link to item Cite

The Value Adults Place on Child Health and Functional Status.

Journal article Value Health · June 2015 OBJECTIVES: To summarize the value adults place on child health and functional status and provide a new quantitative tool that enhances our understanding of the benefits of new health technologies and illustrates the potential contributions of existing dat ... Full text Link to item Cite

The prevalence of potentially modifiable functional deficits and the subsequent use of occupational and physical therapy by older adults with cancer.

Journal article J Geriatr Oncol · May 2015 BACKGROUND: Occupational and physical therapy (OT/PT) services seek to reduce morbidity, mortality, and improve the quality of life of individuals; however, little is known about the needs and use of OT/PT for older adults with cancer. The goal of this stu ... Full text Link to item Cite

The effects of cancer and racial disparities in health-related quality of life among older Americans: a case-control, population-based study.

Journal article Cancer · April 15, 2015 BACKGROUND: Understanding the impact of the cancer care system on racial/ethnic disparities in health-related quality of life (HRQOL) is increasingly important as the number of cancer survivors in the United States grows. The authors prospectively assessed ... Full text Link to item Cite

Comparison of seven-day and repeated 24-hour recall of symptoms in the first 100 days after hematopoietic cell transplantation.

Journal article J Pain Symptom Manage · March 2015 CONTEXT: Patient-reported outcomes (PROs) provide a way to understand the effects of hematopoietic cell transplantation (HCT)-related stress on patients' lives. We previously reported that weekly collection of PROs is feasible. OBJECTIVES: Here, we report ... Full text Link to item Cite

Patient-reported symptoms and quality of life  in adults with acute leukemia: a systematic review.

Journal article Oncol Nurs Forum · March 2015 PURPOSE/OBJECTIVES: Systematically summarize findings from research conducted on adult acute leukemia survivors as they relate to symptoms and quality of life (QOL).   DATA SOURCES: Systematic review of the literature from 1990–2013 found in the PubMed, Ps ... Full text Link to item Cite

Impact of colorectal cancer diagnosis and treatment on health-related quality of life among older Americans: a population-based, case-control study.

Journal article Cancer · March 2015 BackgroundData on health-related quality of life (HRQoL) changes among Americans aged ≥65 following colorectal cancer (CRC) diagnosis and treatment are limited. This study compared HRQoL changes among CRC patients across stages from before to afte ... Full text Cite

Patient-Reported Symptoms and Quality of Life in Adults With Acute Leukemia: A Systematic Review

Journal article ONCOLOGY NURSING FORUM · March 2015 Link to item Cite

Determining the predictors of innovation implementation in healthcare: a quantitative analysis of implementation effectiveness.

Journal article BMC Health Serv Res · January 22, 2015 BACKGROUND: The failure rates for implementing complex innovations in healthcare organizations are high. Estimates range from 30% to 90% depending on the scope of the organizational change involved, the definition of failure, and the criteria to judge it. ... Full text Link to item Cite

Extent and reasons for nonadherence to antihypertensive, cholesterol, and diabetes medications: the association with depressive symptom burden in a sample of American veterans.

Journal article Patient Prefer Adherence · 2015 OBJECTIVE: Persons with depressive symptoms generally have higher rates of medication nonadherence than persons without depressive symptoms. However, little is known about whether this association differs by comorbid medical condition or whether reasons fo ... Full text Link to item Cite

Developing a discrete choice experiment in Malawi: eliciting preferences for breast cancer early detection services.

Journal article Patient Prefer Adherence · 2015 BACKGROUND: In Malawi, routine breast cancer screening is not available and little is known about women's preferences regarding early detection services. Discrete choice experiments are increasingly used to reveal preferences about new health services; how ... Full text Link to item Cite

Sources of Interactional Problems in a Survey of Racial/Ethnic Discrimination.

Journal article Int J Public Opin Res · 2015 Cross-cultural variability in respondent processing of survey questions may bias results from multiethnic samples. We analyzed behavior codes, which identify difficulties in the interactions of respondents and interviewers, from a discrimination module con ... Full text Link to item Cite

Design of the North Carolina Prostate Cancer Comparative Effectiveness and Survivorship Study (NC ProCESS).

Journal article J Comp Eff Res · January 2015 The North Carolina Prostate Cancer Comparative Effectiveness & Survivorship Study (NC ProCESS) was designed in collaboration with stakeholders to compare the effectiveness of different treatment options for localized prostate cancer. Using the Rapid Case A ... Full text Open Access Link to item Cite

Impact of comorbidity on health-related quality of life after prostate cancer treatment: combined analysis of two prospective cohort studies.

Journal article BJU Int · December 2014 OBJECTIVE: To improve and individualise estimates of treatment outcomes for men diagnosed with prostate cancer, we examined the impact of baseline comorbidity on health-related quality of life (HRQL) outcomes in an analysis of two pooled, prospective cohor ... Full text Link to item Cite

US valuation of health outcomes measured using the PROMIS-29.

Journal article Value Health · December 2014 OBJECTIVES: Health valuation studies enhance economic evaluations of treatments by estimating the value of health-related quality of life (HRQOL). The Patient-Reported Outcomes Measurement Information System (PROMIS) includes a 29-item short-form HRQOL mea ... Full text Link to item Cite

Organizational and physician factors associated with patient enrollment in cancer clinical trials.

Journal article Clin Trials · October 2014 BACKGROUND: Our purpose was to identify physicians' individual characteristics, attitudes, and organizational contextual factors associated with higher enrollment of patients in cancer clinical trials among physician participants in the National Cancer Ins ... Full text Link to item Cite

Functional status declines among cancer survivors: trajectory and contributing factors.

Journal article J Geriatr Oncol · October 1, 2014 OBJECTIVE: This study aimed to quantify functional status (FS) trajectories pre- and post-diagnosis of cancer, FS trajectories among cancer-free individuals, and factors affecting FS. MATERIALS AND METHODS: Self-reported FS, scored from 0 (worst) to 100 (b ... Full text Link to item Cite

Development of the National Cancer Institute's patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE).

Journal article J Natl Cancer Inst · September 2014 The standard approach for documenting symptomatic adverse events (AEs) in cancer clinical trials involves investigator reporting using the National Cancer Institute's (NCI's) Common Terminology Criteria for Adverse Events (CTCAE). Because this approach und ... Full text Link to item Cite

Trajectory of overall health from self-report and factors contributing to health declines among cancer survivors.

Journal article Cancer Causes Control · September 2014 PURPOSE: This study aims to quantify trajectories of overall health pre- and post-diagnosis of cancer, trajectories of overall health among cancer-free individuals, and factors affecting overall health status. METHODS: Overall health status, derived from s ... Full text Link to item Cite

Coexistence of urinary incontinence and major depressive disorder with health-related quality of life in older Americans with and without cancer.

Journal article J Cancer Surviv · September 2014 PURPOSE: This study evaluates the prevalence and factors associated with major depressive disorder (MDD) in a population of cancer survivors and the impact of co-occurring MDD and urinary incontinence (UI) on health-related quality of life (HRQOL). METHODS ... Full text Link to item Cite

Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function.

Journal article J Sex Med · August 2014 INTRODUCTION: There is a significant gap in research regarding the readability and comprehension of existing sexual function measures. Patient-reported outcome measures may use terms not well understood by respondents with low literacy. AIM: This study aim ... Full text Link to item Cite

Review of electronic patient-reported outcomes systems used in cancer clinical care.

Journal article J Oncol Pract · July 2014 PURPOSE: The use of electronic patient-reported outcomes (PRO) systems is increasing in cancer clinical care settings. This review comprehensively identifies existing PRO systems and explores how systems differ in the administration of PRO assessments, the ... Full text Link to item Cite

Recommended patient-reported core set of symptoms to measure in prostate cancer treatment trials.

Journal article J Natl Cancer Inst · July 2014 The National Cancer Institute (NCI) Symptom Management and Health-Related Quality of Life Steering Committee convened four working groups to recommend core sets of patient-reported outcomes to be routinely incorporated in clinical trials. The Prostate Canc ... Full text Link to item Cite

Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials.

Journal article J Natl Cancer Inst · July 2014 BACKGROUND: The National Cancer Institute's Symptom Management and Health-Related Quality of Life Steering Committee held a clinical trials planning meeting (September 2011) to identify a core symptom set to be assessed across oncology trials for the purpo ... Full text Link to item Cite

Recommended patient-reported core set of symptoms and quality-of-life domains to measure in ovarian cancer treatment trials.

Journal article J Natl Cancer Inst · July 2014 There is no consensus as to what symptoms or quality-of-life (QOL) domains should be measured as patient-reported outcomes (PROs) in ovarian cancer clinical trials. A panel of experts convened by the National Cancer Institute reviewed studies published bet ... Full text Link to item Cite

Recommended patient-reported core set of symptoms to measure in head and neck cancer treatment trials.

Journal article J Natl Cancer Inst · July 2014 We identified a standard core set of patient-reported symptoms and health-related quality-of-life (HRQOL) domains to be assessed in head and neck (H&N) cancer clinical trials. The core symptom and HRQOL domain scores were used to guide recommendations by a ... Full text Link to item Cite

Patterns of symptoms and functional impairments in children with cancer.

Journal article Pediatr Blood Cancer · July 2014 BACKGROUND: Children with cancer experience multiple symptoms due to their disease and as a result of treatment. The purpose of this study was to demonstrate the feasibility and potential utility of using latent profile analysis (LPA), a type of cluster an ... Full text Link to item Cite

Quality of life changes during the pre- to postdiagnosis period and treatment-related recovery time in older women with breast cancer.

Journal article Cancer · June 15, 2014 BACKGROUND: Health care providers have little population-based evidence about health-related quality of life (HRQOL) changes, from the pre- to postdiagnosis period, and treatment-related recovery time for women aged 65 years and older diagnosed with breast ... Full text Link to item Cite

Does change in health-related quality of life score predict survival? Analysis of EORTC 08975 lung cancer trial.

Journal article Br J Cancer · May 13, 2014 BACKGROUND: Little is known about whether changes in health-related quality of life (HRQoL) scores from baseline during treatment also predict survival, which we aim to investigate in this study. METHODS: We analysed data from 391 advanced non-small-cell l ... Full text Link to item Cite

Comparing unmet needs between community-based palliative care patients with heart failure and patients with cancer.

Journal article J Palliat Med · April 2014 BACKGROUND: As the role of palliative care (PC) has yet to be clearly defined in patients with heart failure (HF), such patients may face barriers regarding PC referral. In order to maximally meet the needs of HF patients, it is necessary to understand how ... Full text Link to item Cite

Demographic differences in health preferences in the United States.

Journal article Med Care · April 2014 BACKGROUND: The United States has a culturally and demographically diverse populace, and the aim of this study was to examine differences in health preferences by sex, age, ethnicity, and race. METHODS: We assessed preferences for health outcomes defined b ... Full text Link to item Cite

Associations of cancer and other chronic medical conditions with SF-6D preference-based scores in Medicare beneficiaries.

Journal article Qual Life Res · March 2014 PURPOSE: Documenting the impact of different types of cancer on daily functioning and well-being is important for understanding burden relative to other chronic medical conditions. This study examined the impact of 10 different cancers and 13 other chronic ... Full text Link to item Cite

Cognitive interviewing of the US National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

Journal article Qual Life Res · February 2014 PURPOSE: The National Cancer Institute's Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) is a library of question items that enables patient reporting of adverse events (AEs) in clinical trials. This stud ... Full text Link to item Cite

A global analysis of multitrial data investigating quality of life and symptoms as prognostic factors for survival in different tumor sites.

Journal article Cancer · January 15, 2014 BACKGROUND: The objective of this study was to examine the prognostic value of baseline health-related quality of life (HRQOL) for survival with regard to different cancer sites using 1 standardized and validated patient self-assessment tool. METHODS: In t ... Full text Link to item Cite

"Not the 'grim reaper service'": an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure.

Journal article J Am Heart Assoc · January 2, 2014 BACKGROUND: Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative ... Full text Link to item Cite

Characterizing weekly self-reported antihypertensive medication nonadherence across repeated occasions.

Journal article Patient Prefer Adherence · 2014 BACKGROUND: Little is known about weekly variability in medication nonadherence both between and within persons. PURPOSE: To characterize medication nonadherence across repeated, closely spaced occasions. METHODS: This prospective cohort study comprised fo ... Full text Link to item Cite

Ensuring comprehensive assessment of urinary problems in prostate cancer through patient-physician concordance.

Journal article Urol Oncol · January 2014 OBJECTIVES: To examine the concordance between clinicians and men diagnosed with prostate cancer on a clinician-derived pathophysiological classification of the following self-reported urinary complications: storage (irritative), voiding (obstructive), and ... Full text Link to item Cite

An examination of racial differences in process and outcome of colorectal cancer care quality among users of the veterans affairs health care system.

Journal article Clin Colorectal Cancer · December 2013 BACKGROUND: Veterans Affairs (VA) manages the largest US integrated health care system. Although quality of VA colorectal cancer (CRC) care is well chronicled, there is a paucity of research examining racial differences in this care. This study examines ra ... Full text Link to item Cite

Comparison of US panel vendors for online surveys.

Journal article J Med Internet Res · November 29, 2013 BACKGROUND: Despite the increasing use of panel surveys, little is known about the differences in data quality across panels. OBJECTIVE: The aim of this study was to characterize panel survey companies and their respondents based on (1) the timeliness of r ... Full text Link to item Cite

Development and validation of the Psychological Adaptation Scale (PAS): use in six studies of adaptation to a health condition or risk.

Journal article Patient Educ Couns · November 2013 OBJECTIVE: We introduce The Psychological Adaptation Scale (PAS) for assessing adaptation to a chronic condition or risk and present validity data from six studies of genetic conditions. METHODS: Informed by theory, we identified four domains of adaptation ... Full text Link to item Cite

Recommendations for high-priority research on cancer-related fatigue in children and adults.

Journal article J Natl Cancer Inst · October 2, 2013 Over the past decades, some scientific progress has been made in understanding and treating cancer-related fatigue (CRF). However, three major problems have limited further progress: lack of agreement about measurement, inadequate understanding of the unde ... Full text Link to item Cite

Conceptual model for the PROMIS sexual function and satisfaction measure

Journal article QUALITY OF LIFE RESEARCH · October 1, 2013 Link to item Cite

ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research.

Journal article Qual Life Res · October 2013 PURPOSE: An essential aspect of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) is the integration of patient perspectives and experiences with clinical data to evaluate interventions. Thus, PCOR and CER require captu ... Full text Link to item Cite

Cardiopulmonary fitness in patients undergoing hematopoietic SCT: a pilot study.

Journal article Bone Marrow Transplant · October 2013 Hematopoietic cell transplantation (HCT) is a life-saving treatment for patients with high-risk hematological malignancies. Prognostic measures to determine fitness for HCT are needed to inform decision-making and interventions. VO(2peak) is obtained by me ... Full text Link to item Cite

Examining potential colorectal cancer care disparities in the Veterans Affairs health care system.

Journal article J Clin Oncol · October 1, 2013 PURPOSE: Racial disparities in cancer treatment and outcomes are a national problem. The nationwide Veterans Affairs (VA) health system seeks to provide equal access to quality care. However, the relationship between race and care quality for veterans with ... Full text Link to item Cite

Health-related quality of life differences between African Americans and non-Hispanic whites with head and neck cancer.

Journal article Head Neck · September 2013 BACKGROUND: Cancers of the head and neck are associated with detriments in health-related quality of life (HRQOL); however, little is known about different experiences between African Americans and non-Hispanic whites. METHODS: HRQOL was measured by the Fu ... Full text Link to item Cite

Urinary incontinence and health-related quality of life among older Americans with and without cancer: a cross-sectional study.

Journal article BMC Cancer · August 7, 2013 BACKGROUND: Few studies have investigated the impact of urinary incontinence (UI) on health-related quality of life (HRQOL) among cancer survivors. UI is prevalent in the general population and can be both an indicator of cancer and a side effect of cancer ... Full text Link to item Cite

Monitoring population health for Healthy People 2020: evaluation of the NIH PROMIS® Global Health, CDC Healthy Days, and satisfaction with life instruments.

Journal article Qual Life Res · August 2013 PURPOSE: Healthy People 2020 identified health-related quality of life and well-being (WB) as indicators of population health for the next decade. This study examined the measurement properties of the NIH PROMIS(®) Global Health Scale, the CDC Healthy Days ... Full text Link to item Cite

The first step to integrating the child's voice in adverse event reporting in oncology trials: a content validation study among pediatric oncology clinicians.

Journal article Pediatr Blood Cancer · July 2013 PURPOSE: Children with cancer experience significant toxicities while undergoing treatment. Documentation of adverse events (AEs) in clinical trials is mandated by federal agencies. Although many AEs are subjective, the current standard is clinician report ... Full text Link to item Cite

A literature synthesis of symptom prevalence and severity in persons receiving active cancer treatment.

Journal article Support Care Cancer · June 2013 PURPOSE: Patients with cancer experience acute and chronic symptoms caused by their underlying disease or by the treatment. While numerous studies have examined the impact of various treatments on symptoms experienced by cancer patients, there are inconsis ... Full text Link to item Cite

Some methodological considerations in theory-based health behavior research.

Journal article Health Psychol · May 2013 As this special issue shows, much research in social and personality psychology is directly relevant to health psychology. In this brief commentary, we discuss three topics in research methodology that may be of interest to investigators involved in health ... Full text Link to item Cite

In response.

Journal article Med Care · May 2013 Full text Link to item Cite

Construct validity of the PROMIS® sexual function and satisfaction measures in patients with cancer.

Journal article Health Qual Life Outcomes · March 11, 2013 BACKGROUND: With data from a diverse sample of patients either in treatment for cancer or post-treatment for cancer, we examine inter-domain and cross-domain correlations among the core domains of the Patient-Reported Outcomes Measurement Information Syste ... Full text Link to item Cite

Feasibility of frequent patient-reported outcome surveillance in patients undergoing hematopoietic cell transplantation.

Journal article Biol Blood Marrow Transplant · March 2013 Patient-reported outcomes (PROs), including symptoms and health-related quality of life (HRQOL), provide a patient-centered description of hematopoietic cell transplantation (HCT)-related toxicity. These data characterize the patient experience after HCT a ... Full text Link to item Cite

Development of the NIH PROMIS ® Sexual Function and Satisfaction measures in patients with cancer.

Journal article J Sex Med · February 2013 INTRODUCTION: We describe the development and validation of the Patient-Reported Outcomes Measurement Information System(®) Sexual Function and Satisfaction (PROMIS(®) SexFS; National Institutes of Health) measures, version 1.0, for cancer populations. AIM ... Full text Link to item Cite

The association of race with timeliness of care and survival among Veterans Affairs health care system patients with late-stage non-small cell lung cancer.

Journal article Cancer Manag Res · 2013 BACKGROUND: Non-small cell lung cancer is the leading cause of cancer-related mortality in the United States. Patients with late-stage disease (stage 3/4) have five-year survival rates of 2%-15%. Care quality may be measured as time to receiving recommende ... Full text Link to item Cite

Examining potential cancer care disparities in an equal access system: Quality of colorectal cancer care (CRC) in the Veterans Affairs (VA) health care system

Journal article JOURNAL OF CLINICAL ONCOLOGY · December 1, 2012 Full text Link to item Cite

Examining potential cancer care disparities in an equal access system: Quality of colorectal cancer care (CRC) in the Veterans Affairs (VA) health care system.

Journal article J Clin Oncol · December 2012 229 Background: Racial disparities in cancer treatment and outcomes are a substantial problem nationally. The Veterans Affairs (VA) health system is nationwide, with goals of being equal access and delivering high-quality care; however, the presence or ext ... Full text Link to item Cite

The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy.

Journal article Med Care · December 2012 BACKGROUND: The goal of comparative effectiveness research (CER) is to explain the differential benefits and harms of alternate methods to prevent, diagnose, treat, and monitor a clinical condition or to improve the delivery of care. To inform decision mak ... Full text Link to item Cite

Initial validation of a self-report measure of the extent of and reasons for medication nonadherence.

Journal article Med Care · December 2012 BACKGROUND: Self-report measures of medication nonadherence confound the extent of and reasons for medication nonadherence. Each construct is assessed with a different type of psychometric model, which dictates how to establish reliability and validity. OB ... Full text Link to item Cite

Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology.

Journal article J Clin Oncol · December 1, 2012 Examining the patient's subjective experience in prospective clinical comparative effectiveness research (CER) of oncology treatments or process interventions is essential for informing decision making. Patient-reported outcome (PRO) measures are the stand ... Full text Link to item Cite

Impact of diagnosis and treatment of clinically localized prostate cancer on health-related quality of life for older Americans: a population-based study.

Journal article Cancer · November 15, 2012 BACKGROUND: Few studies have measured longitudinal changes in health-related quality of life (HRQOL) among patients with prostate cancer starting before their cancer diagnosis or have provided simultaneous comparisons with a matched noncancer cohort. In th ... Full text Link to item Cite

Mental and physical health-related quality of life among U.S. cancer survivors: population estimates from the 2010 National Health Interview Survey.

Journal article Cancer Epidemiol Biomarkers Prev · November 2012 BACKGROUND: Despite extensive data on health-related quality of life (HRQOL) among cancer survivors, we do not yet have an estimate of the percentage of survivors with poor mental and physical HRQOL compared with population norms. HRQOL population means fo ... Full text Link to item Cite

The Piper Fatigue Scale-12 (PFS-12): psychometric findings and item reduction in a cohort of breast cancer survivors.

Journal article Breast Cancer Res Treat · November 2012 Brief, valid measures of fatigue, a prevalent and distressing cancer symptom, are needed for use in research. This study's primary aim was to create a shortened version of the revised Piper Fatigue Scale (PFS-R) based on data from a diverse cohort of breas ... Full text Link to item Cite

Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations.

Journal article Qual Life Res · October 2012 PURPOSE: While clinical care is frequently directed at making patients "feel better," patients' reports on their functioning and well-being (patient-reported outcomes [PROs]) are rarely collected in routine clinical practice. The International Society for ... Full text Link to item Cite

Impact of age and comorbidity on treatment and outcomes in elderly cancer patients.

Journal article Semin Radiat Oncol · October 2012 Cancer is a prevalent disease in elderly patients, who are also more likely to have comorbid illnesses than younger patients. Both increasing age and comorbidities are associated with a lower use of aggressive cancer therapies-including surgery, chemothera ... Full text Link to item Cite

Attitudes and intentions regarding abortion provision among medical school students in South Africa.

Journal article Int Perspect Sex Reprod Health · September 2012 CONTEXT: Although South Africa liberalized its abortion law in 1996, significant barriers still impede service provision, including the lack of trained and willing providers. A better understanding is needed of medical students' attitudes, beliefs and inte ... Full text Link to item Cite

A dimensional approach to understanding severity estimates and risk correlates of marijuana abuse and dependence in adults.

Journal article Int J Methods Psychiatr Res · June 2012 While item response theory (IRT) research shows a latent severity trait underlying response patterns of substance abuse and dependence symptoms, little is known about IRT-based severity estimates in relation to clinically relevant measures. In response to ... Full text Open Access Link to item Cite

Intensity-modulated radiation therapy, proton therapy, or conformal radiation therapy and morbidity and disease control in localized prostate cancer.

Journal article JAMA · April 18, 2012 CONTEXT: There has been rapid adoption of newer radiation treatments such as intensity-modulated radiation therapy (IMRT) and proton therapy despite greater cost and limited demonstrated benefit compared with previous technologies. OBJECTIVE: To determine ... Full text Link to item Cite

DEVELOPING A THEORETICALLY INFORMED MEASURE TO DETECT AND ADDRESS SELF-REPORTED MEDICATION NONADHERENCE

Journal article ANNALS OF BEHAVIORAL MEDICINE · April 1, 2012 Open Access Link to item Cite

Development of a prognostic model for six-month mortality in older adults with declining health.

Journal article J Pain Symptom Manage · March 2012 CONTEXT: Estimation of six-month prognosis is essential in hospice referral decisions, but accurate, evidence-based tools to assist in this task are lacking. OBJECTIVES: To develop a new prognostic model, the Patient-Reported Outcome Mortality Prediction T ... Full text Link to item Cite

Knowledge of termination of pregnancy (TOP) legislation and attitudes toward TOP clinical training among medical students attending two South African universities.

Journal article World Health Popul · 2012 UNLABELLED: Provision of safe, voluntary, termination of pregnancy (TOP) in South Africa is challenged by an insufficient number of TOP-trained clinicians. Medical students' understanding of TOP legality and their attitudes toward TOP training are indicato ... Full text Link to item Cite

Patient self-reports of symptoms and clinician ratings as predictors of overall cancer survival.

Journal article J Natl Cancer Inst · December 21, 2011 BACKGROUND: The National Cancer Institute's Common Terminology Criteria for Adverse Events (NCI-CTCAE) reporting system is widely used by clinicians to measure patient symptoms in clinical trials. The European Organization for Research and Treatment of Can ... Full text Link to item Cite

Assuring the patient centeredness of patient-reported outcomes: content validity in medical product development and comparative effectiveness research.

Journal article Value Health · December 2011 Full text Link to item Cite

Comparing Cognitive Interviewing and Psychometric Methods to Evaluate a Racial/Ethnic Discrimination Scale.

Journal article Field methods · November 2011 Proponents of survey evaluation have long advocated the integration of qualitative and quantitative methodologies, but this recommendation has rarely been practiced. We used both methods to evaluate the "Everyday Discrimination" scale (EDS), which measures ... Full text Link to item Cite

Sleep duration change across breast cancer survivorship: associations with symptoms and health-related quality of life.

Journal article Breast Cancer Res Treat · November 2011 Sleep duration among breast cancer survivors correlates with fatigue, depression, and health-related quality of life (HRQOL); however, this has not been studied longitudinally. This study investigated patterns of sleep duration change across the early brea ... Full text Link to item Cite

Minimal important differences for interpreting health-related quality of life scores from the EORTC QLQ-C30 in lung cancer patients participating in randomized controlled trials.

Journal article Support Care Cancer · November 2011 BACKGROUND: The aim of this study was to determine the smallest changes in health-related quality of life (HRQOL) scores in a subset of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire core 30 (EORTC QLQ-C30) sca ... Full text Link to item Cite

A multicenter pilot evaluation of the National Institutes of Health chronic graft-versus-host disease (cGVHD) therapeutic response measures: feasibility, interrater reliability, and minimum detectable change.

Journal article Biol Blood Marrow Transplant · November 2011 The lack of standardized criteria for measuring therapeutic response is a major obstacle to the development of new therapeutic agents for chronic graft-versus-host disease (cGVHD). National Institutes of Health (NIH) consensus criteria for evaluating thera ... Full text Link to item Cite

Use of item response theory and latent class analysis to link poly-substance use disorders with addiction severity, HIV risk, and quality of life among opioid-dependent patients in the Clinical Trials Network.

Journal article Drug Alcohol Depend · November 1, 2011 BACKGROUND: This study applied item response theory (IRT) and latent class analysis (LCA) procedures to examine the dimensionality and heterogeneity of comorbid substance use disorders (SUDs) and explored their utility for standard clinical assessments, in ... Full text Open Access Link to item Cite

Examining the relationships among health-related quality-of-life indicators in cancer patients participating in clinical trials: a pooled study of baseline EORTC QLQ-C30 data.

Journal article Expert Rev Pharmacoecon Outcomes Res · October 2011 AIMS: Cancer patients experience multiple and concurrent health-related problems and symptoms due to their illness and therapies. The first objective of this analysis was to identify how health-related quality-of-life (HRQoL) indicators cluster among cance ... Full text Link to item Cite

Minimal clinically meaningful differences for the EORTC QLQ-C30 and EORTC QLQ-BN20 scales in brain cancer patients.

Journal article Ann Oncol · September 2011 BACKGROUND: We aimed to determine the smallest changes in health-related quality of life (HRQoL) scores in the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire core 30 and the Brain Cancer Module (QLQ-BN20), which co ... Full text Link to item Cite

Assessment of quality of cancer-related follow-up care from the cancer survivor's perspective.

Journal article J Clin Oncol · April 1, 2011 PURPOSE: We assessed cancer survivors' perceptions of the quality of their follow-up care. METHODS: We surveyed a population-based cohort of leukemia, bladder, and colorectal cancer survivors diagnosed 2 to 5 years previously in northern California (N = 62 ... Full text Link to item Cite

Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).

Journal article Psychooncology · April 2011 OBJECTIVE: Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual funct ... Full text Link to item Cite

Stakeholder perspectives on implementing the National Cancer Institute's patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE).

Journal article Transl Behav Med · March 2011 The National Cancer Institute (NCI) is developing a patient-reported version of its Common Terminology Criteria for Adverse Events, called the "PRO-CTCAE." The PRO-CTCAE consists of a library of patient-reported items which can be administered in clinical ... Full text Link to item Cite

Development of a comprehensive heart disease knowledge questionnaire

Journal article American Journal of Health Education · January 1, 2011 Background: Heart disease is the number one killer of both men and women in the United States, yet a comprehensive and evidence-based heart disease knowledge assessment is currently not available. Purpose: This paper describes the two-phase development of ... Full text Cite

MEASURING EVERYDAY RACIAL/ETHNIC DISCRIMINATION IN HEALTH SURVEYS: How Best to Ask the Questions, in One or Two Stages, Across Multiple Racial/Ethnic Groups?

Journal article Du Bois Rev · 2011 While it is clear that self-reported racial/ethnic discrimination is related to illness, there are challenges in measuring self-reported discrimination or unfair treatment. In the present study, we evaluate the psychometric properties of a self-reported in ... Full text Link to item Cite

Electronic toxicity monitoring and patient-reported outcomes.

Journal article Cancer J · 2011 Understanding the potential profile of adverse events associated with cancer treatment is essential in balancing safety versus benefits. Multiple stakeholders make use of this information for decision making, including patients, clinicians, researchers, re ... Full text Link to item Cite

The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008.

Journal article J Clin Epidemiol · November 2010 OBJECTIVES: Patient-reported outcomes (PROs) are essential when evaluating many new treatments in health care; yet, current measures have been limited by a lack of precision, standardization, and comparability of scores across studies and diseases. The Pat ... Full text Link to item Cite

Progress on the PROMIS (R) Sexual Function Measure

Journal article QUALITY OF LIFE RESEARCH · October 1, 2010 Link to item Cite

Sleep-wake functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS(®)).

Journal article Psychooncology · October 2010 OBJECTIVE: Cancer and its treatments disturb sleep-wake functioning; however, there is little information available on the characteristics and consequences of sleep problems associated with cancer. As part of an effort to improve measurement of sleep-wake ... Full text Link to item Cite

Using Testlet Response Theory to analyze data from a survey of attitude change among breast cancer survivors.

Journal article Stat Med · August 30, 2010 In this paper we examine alternative measurement models for fitting data from health surveys. We show why a testlet-based latent trait model that includes covariate information, embedded within a fully Bayesian framework, can allow multiple simultaneous in ... Full text Link to item Cite

ASCPRO recommendations for the assessment of fatigue as an outcome in clinical trials.

Journal article J Pain Symptom Manage · June 2010 CONTEXT: Development of pharmacological and behavioral interventions for cancer-related fatigue (CRF) requires adequate measures of this symptom. A guidance document from the Food and Drug Administration offers criteria for the formulation and evaluation o ... Full text Link to item Cite

Research design considerations for confirmatory chronic pain clinical trials: IMMPACT recommendations.

Journal article Pain · May 2010 There has been an increase in the number of chronic pain clinical trials in which the treatments being evaluated did not differ significantly from placebo in the primary efficacy analyses despite previous research suggesting that efficacy could be expected ... Full text Link to item Cite

Posttraumatic growth and health-related quality of life in a racially diverse cohort of breast cancer survivors.

Journal article J Health Psychol · May 2010 This study examined the relationship between race, religiosity, and posttraumatic growth as well as the association between growth and physical and mental health-related quality of life (HRQOL) in breast cancer survivors (N = 802; M age = 57.2). Multivaria ... Full text Link to item Cite

An opportunity to refine our understanding of "response shift" and to educate researchers on designing quality research studies: response to Ubel, Peeters, and Smith.

Journal article Qual Life Res · May 2010 There is no advantage at this time to abandon the term "response shift" as suggested by Ubel et al. (Qual Life Res, 2010). The term is well known in the research field and has impacted the way we think about measuring quality of life (QOL) longitudinally. ... Full text Link to item Cite

A review of quality of care evaluation for the palliation of dyspnea.

Journal article Am J Respir Crit Care Med · March 15, 2010 Assessment and management of dyspnea has emerged as a priority topic for quality evaluation and improvement. Evaluating dyspnea quality of care requires valid, reliable, and responsive measures of the care provided to patients across settings and diseases. ... Full text Link to item Cite

An item response theory analysis of DSM-IV criteria for hallucinogen abuse and dependence in adolescents.

Journal article Addict Behav · March 2010 AIM: This study applied both item response theory (IRT) and multiple indicators-multiple causes (MIMIC) methods to evaluate item-level psychometric properties of diagnostic questions for hallucinogen use disorders (HUDs), differential item functioning (DIF ... Full text Open Access Link to item Cite

Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges.

Journal article Qual Life Res · October 2009 PURPOSE: One goal of the Patient-Reported Outcomes Measurement Information System (PROMIS) is to develop a measure of sexual functioning that broadens the definition of sexual activity and incorporates items that reflect constructs identified as important ... Full text Link to item Cite

Aversion to ambiguity regarding medical tests and treatments: measurement, prevalence, and relationship to sociodemographic factors.

Journal article J Health Commun · September 2009 Aversion to "ambiguity"-uncertainty about the reliability, credibility, or adequacy of risk-related information-is an important problem that may influence judgments and decisions about medical interventions. Ambiguity aversion (AA) varies among individuals ... Full text Link to item Cite

Impact of cancer on health-related quality of life of older Americans.

Journal article J Natl Cancer Inst · June 16, 2009 BACKGROUND: The impact of cancer on health-related quality of life (HRQOL) is poorly understood because of the lack of baseline HRQOL status before cancer diagnosis. To our knowledge, this is the first population-based study to quantify the nature and exte ... Full text Link to item Cite

Construct and differential item functioning in the assessment of prescription opioid use disorders among American adolescents.

Journal article J Am Acad Child Adolesc Psychiatry · May 2009 OBJECTIVE: To examine the psychometric properties of diagnostic criteria for prescription analgesic opioid use disorders (OUDs) and to identify background predictors of a latent continuum for OUD liability. METHOD: Data were drawn from the adolescent sampl ... Full text Open Access Link to item Cite

Initial report of the cancer Patient-Reported Outcomes Measurement Information System (PROMIS) sexual function committee: review of sexual function measures and domains used in oncology.

Journal article Cancer · March 15, 2009 For this report, the authors described the initial activities of the Cancer Patient-Reported Outcomes Measurement Information System (PROMIS)-Sexual Function domain group, which is part of the National Institutes of Health Roadmap Initiative to develop bri ... Full text Link to item Cite

Making better use of existing cancer data: Patient Reported Outcomes and Behavioural Evidence: a new international initiative.

Journal article Eur J Cancer Care (Engl) · March 2009 Full text Link to item Cite

Race/ethnicity, physical activity, and quality of life in breast cancer survivors.

Journal article Cancer Epidemiol Biomarkers Prev · February 2009 PURPOSE: To examine associations between recreational physical activity and quality of life (QOL) in a multiethnic cohort of breast cancer survivors, specifically testing whether associations are consistent across racial/ethnic groups after accounting for ... Full text Link to item Cite

A mixed-methods approach to developing a self-reported racial/ethnic discrimination measure for use in multiethnic health surveys.

Journal article Ethn Dis · 2009 OBJECTIVE: The development of measures of self-reported racial/ethnic discrimination is an active area of research, but few measures have been validated across multiple racial/ethnic and language groups. Our goal is to develop and evaluate a discrimination ... Link to item Cite

Evaluation of the Healthy Eating Index-2005.

Journal article J Am Diet Assoc · November 2008 BACKGROUND: The Healthy Eating Index (HEI), a measure of diet quality as specified by federal dietary guidance, was revised to conform to the Dietary Guidelines for Americans 2005. The HEI has several components, the scores of which are totaled. OBJECTIVE: ... Full text Link to item Cite

The patient reported outcomes measurement information system—Cancer (PROMIS-Ca): Cancer-specific application of a generic fatigue measure

Journal article Journal of Clinical Oncology · May 20, 2008 Full text Cite

The patient reported outcomes measurement information system-Cancer (PROMIS-Ca): Cancer-specific application of a generic fatigue measure.

Journal article J Clin Oncol · May 20, 2008 6537 Background: PROMIS-Ca is a cancer-specific extension of an NIH Roadmap effort to standardize measures of self-reported symptoms (pain; fatigue; anxiety; depression), physical function, and social function ( http://www.nihpromis.org ). PROMIS provides ... Link to item Cite

ERRATUM

Journal article Journal of Clinical Oncology · February 20, 2008 Full text Cite

Cancer, comorbidities, and health-related quality of life of older adults.

Journal article Health Care Financ Rev · 2008 This study examined the physical and mental health of 126,685 males and females age 65 or over, with and without cancer that completed a Medicare Health Outcomes Survey (MHOS) between 1998-2002. Cancer information was ascertained through the National Cance ... Link to item Cite

Cigarette smoking and health-related quality of life in Medicare beneficiaries.

Journal article Health Care Financ Rev · 2008 This study examined associations between cigarette smoking, cancer, and self-reported physical (SF-36 Physical Component Summary Score, [PCS]) and mental health (SF-36 Mental Component Summary Score, [MCS]) among 123,567 Medicare beneficiaries enrolled in ... Link to item Cite

Reducing bias in cancer research: application of propensity score matching.

Journal article Health Care Financ Rev · 2008 In cancer observational studies, differences between groups on confounding variables may have a significant effect on results when examining health outcomes. This study demonstrates the utility of propensity score matching to balance a non-cancer and cance ... Link to item Cite

Standardizing patient-reported outcomes assessment in cancer clinical trials: a patient-reported outcomes measurement information system initiative.

Journal article J Clin Oncol · November 10, 2007 Patient-reported outcomes (PROs), such as symptom scales or more broad-based health-related quality-of-life measures, play an important role in oncology clinical trials. They frequently are used to help evaluate cancer treatments, as well as for supportive ... Full text Link to item Cite

Possible socioeconomic and ethnic disparities in quality of life in a cohort of breast cancer survivors.

Journal article Breast Cancer Res Treat · November 2007 BACKGROUND: This paper describes the ethnic and socioeconomic correlates of functioning in a cohort of long-term nonrecurring breast cancer survivors. METHODS: Participants (n = 804) in this study were women from the Health, Eating, Activity, and Lifestyle ... Full text Link to item Cite

The sexual function domain of the NIHPROMIS: Preliminary report

Journal article PSYCHO-ONCOLOGY · September 1, 2007 Link to item Cite

Fatigue in breast cancer survivors two to five years post diagnosis: a HEAL Study report.

Journal article Qual Life Res · August 2007 PURPOSE: The purpose of this study was to estimate prevalence of fatigue, identify correlates of fatigue and evaluate the relationship between fatigue and health-related quality of life (HRQOL) in a large cohort of disease-free breast cancer survivors. MET ... Full text Link to item Cite

Physical activity, long-term symptoms, and physical health-related quality of life among breast cancer survivors: a prospective analysis.

Journal article J Cancer Surviv · June 2007 INTRODUCTION: Many breast cancer survivors experience persistent physical symptoms of cancer and treatment that can decrease health-related quality of life (HRQOL). This prospective study investigated physical activity (PA), occurrence of physical symptoms ... Full text Link to item Cite

Psychometric evaluation and calibration of health-related quality of life item banks: plans for the Patient-Reported Outcomes Measurement Information System (PROMIS).

Journal article Med Care · May 2007 BACKGROUND: The construction and evaluation of item banks to measure unidimensional constructs of health-related quality of life (HRQOL) is a fundamental objective of the Patient-Reported Outcomes Measurement Information System (PROMIS) project. OBJECTIVES ... Full text Link to item Cite

The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.

Journal article Med Care · May 2007 BACKGROUND: The National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) Roadmap initiative (www.nihpromis.org) is a 5-year cooperative group program of research designed to develop, validate, and standardize it ... Full text Link to item Cite

Special issues for building computerized-adaptive tests for measuring patient-reported outcomes: the National Institute of Health's investment in new technology.

Journal article Med Care · November 2006 Full text Link to item Cite

Psychometric properties of a tool for measuring hormone-related symptoms in breast cancer survivors.

Journal article Psychooncology · November 2006 Hormone-related symptoms are common in breast cancer survivors and many aspects of these symptoms are currently under study. Reliable and valid assessment tools are needed to successfully study hormone-related symptoms in breast cancer survivors; however, ... Full text Link to item Cite

Should function and bother be measured and reported separately for prostate cancer quality-of-life domains?

Journal article Urology · September 2006 OBJECTIVES: To evaluate the psychometric properties of the three domains bowel, urinary, and sexual function as they were measured in the Prostate Cancer Outcomes Study and examine their use in different research and practice settings. Leading prostate can ... Full text Link to item Cite

Physical activity and acculturation among adult Hispanics in the United States.

Journal article Res Q Exerc Sport · June 2006 Understanding the prevalence and demographic correlates of physical activity is important for public health and epidemiological research. This analysis examines the association between acculturation and physical activity in a large (approximately 5,000) sa ... Full text Link to item Cite

Measuring therapeutic response in chronic graft-versus-host disease: National Institutes of Health Consensus Development Project on Criteria for Clinical Trials in Chronic Graft-versus-Host Disease: IV. Response Criteria Working Group report.

Journal article Biol Blood Marrow Transplant · March 2006 The lack of standardized criteria for quantitative measurement of therapeutic response in clinical trials poses a major obstacle for the development of new agents in chronic graft-versus-host disease (GVHD). This consensus document was developed to address ... Full text Link to item Cite

Psychometric evaluation of the Brief Cancer Impact Assessment among breast cancer survivors.

Journal article Oncology · 2006 OBJECTIVES: The increasing number of cancer survivors brings greater attention to the biopsychosocial impact of surviving cancer. Instruments exist that measure quality of life (QOL), symptoms, and specific types of functioning after cancer; however, a rel ... Full text Link to item Cite

An item response theory-based pain item bank can enhance measurement precision.

Journal article J Pain Symptom Manage · September 2005 Cancer-related pain is often under-recognized and undertreated. This is partly due to the lack of appropriate assessments, which need to be comprehensive and precise yet easily integrated into clinics. Computerized adaptive testing (CAT) can enable precise ... Full text Link to item Cite

Item response theory and its applications to patient-reported outcomes measurement.

Journal article Eval Health Prof · September 2005 This article provides an overview of item response theory (IRT) models and how they can be appropriately applied to patient-reported outcomes (PROs) measurement. Specifically, the following topics are discussed: (a) basics of IRT, (b) types of IRT models, ... Full text Link to item Cite

Data pooling and analysis to build a preliminary item bank: an example using bowel function in prostate cancer.

Journal article Eval Health Prof · June 2005 Assessing bowel function (BF) in prostate cancer can help determine therapeutic trade-offs. We determined the components of BF commonly assessed in prostate cancer studies as an initial step in creating an item bank for clinical and research application. W ... Full text Link to item Cite

Do patients consistently report comorbid conditions over time?: results from the prostate cancer outcomes study.

Journal article Med Care · April 2005 BACKGROUND: Comorbidity is an important dimension of patient health status. However, limited attention has been given to assessing the reliability of patient-reported data on comorbid conditions. OBJECTIVES: We sought to evaluate the consistency of self-re ... Full text Link to item Cite

Cancer outcomes research.

Journal article J Natl Cancer Inst Monogr · 2004 Full text Link to item Cite

US physicians' attitudes toward genetic testing for cancer susceptibility.

Journal article Am J Med Genet A · July 1, 2003 Genetic testing for an inherited susceptibility to cancer is an emerging technology in medical practice. Little information is currently available about physicians' attitudes toward these tests. To assess US physicians' opinions on unresolved issues surrou ... Full text Link to item Cite

Item response theory modeling in health outcomes measurement

Journal article Expert Review of Pharmacoeconomics and Outcomes Research · April 1, 2003 There is a great need in health outcomes research to develop instruments that accurately measure a person's health status with minimal response burden. This need for psychometrically sound and clinically meaningful measures calls for better analytical tool ... Full text Cite

Assessing tobacco beliefs among youth using item response theory models.

Journal article Drug Alcohol Depend · November 2002 Successful intervention research programs to prevent adolescent smoking require well-chosen, psychometrically sound instruments for assessing smoking prevalence and attitudes. Twelve thousand eight hundred and ten adolescents were surveyed about their smok ... Full text Link to item Cite

Quality of life following localized prostate cancer treated initially with androgen deprivation therapy or no therapy.

Journal article J Natl Cancer Inst · March 20, 2002 BACKGROUND: Many men diagnosed with clinically localized prostate cancer are initially treated conservatively, receiving neither surgery nor radiotherapy for the first year. Treatment patterns and quality-of-life outcomes have not been previously reported ... Full text Link to item Cite