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Kathryn Eve Flynn

Kathryn Eve Flynn

Adjunct Professor in the Department of Population Health Sciences
Population Health Sciences
kathryn.flynn@duke.edu
Box 3850 Med Ctr, Durham, NC 27710
2400 Pratt St, Durham, NC 27710

Selected Publications

Expert consensus definition of treatment intolerance in chronic myeloid leukemia in chronic phase.

Journal Article Hematology · December 2025 INTRODUCTION: Chronic myeloid leukemia in the chronic phase (CML-CP) has undergone therapeutic transformation with the advent of BCR::ABL1 tyrosine kinase inhibitors (TKIs), improving 10-year survival rates from 20% to ∼90%. These outcomes place increasing ... Full text Link to item Cite

Use of Patient-Reported Outcome Measures in Clinical Studies of Chronic Myeloid Leukemia: A Scoping Literature Review.

Journal Article Current hematologic malignancy reports · October 2025 Purpose of reviewManagement of chronic myeloid leukemia (CML) with tyrosine kinase inhibitors has improved patient survival. However, patient quality of life (QOL) continues to be impacted by disease symptoms and treatment-related adverse events. ... Full text Cite

Supervised Exercise Training Improves Quality of Life in Chronic Heart Failure With Preserved Ejection Fraction: A META-ANALYSIS OF RANDOMIZED TRIALS

Journal Article Journal of Cardiopulmonary Rehabilitation and Prevention · September 1, 2025 Purpose: Patients with heart failure with preserved ejection fraction (HFpEF) have significant impairments in patient-reported outcomes (PRO) including physical functioning and quality of life (QOL). We conducted a meta-analysis of randomized clinical tria ... Full text Cite

Factors associated with erectile dysfunction in men with lower urinary tract symptoms (LUTS): a Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN) study.

Journal Article Transl Androl Urol · August 30, 2025 BACKGROUND: Erectile function (EF) and its associated covariates have not been extensively studied in a large covariate of patients seeking treatment for lower urinary tract symptoms (LUTS). Our objective is to determine the relationship between urinary sy ... Full text Link to item Cite

Urinary Incontinence Medications: Patient-Initiated Concerns in Primary Care.

Journal Article Urogynecology (Phila) · July 1, 2025 IMPORTANCE: Guideline-recommended medications for overactive bladder and urge urinary incontinence (OAB/UUI) are effective but have high costs and side effects. Little is known about patient concerns regarding these medications when prescribed by their pri ... Full text Link to item Cite

Sexual function in women with bothersome lower urinary tract symptoms: findings from the symptoms of lower urinary tract dysfunction research network (LURN) cohort study.

Journal Article J Sex Med · June 3, 2025 BACKGROUND: Bothersome lower urinary tract symptoms (LUTS) can negatively affect the quality of life in women, including sexual function. AIM: The primary aim of the study was to explore the association between LUTS severity and sexual functioning among wo ... Full text Link to item Cite

Sexual Health Outcomes in Sexual Minority and Heterosexual Men After Prostate Radiation Therapy.

Conference Int J Radiat Oncol Biol Phys · June 1, 2025 PURPOSE/OBJECTIVES: To characterize the effects of prostate radiation therapy on sexual health outcomes in sexual minority men (SMM), particularly those engaging in receptive anal intercourse (RAI), and compare them with heterosexual men (HET). METHODS AND ... Full text Link to item Cite

Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN II) Urinary Urgency Phenotyping Study: Methods and Baseline Urinary Symptoms by Age and Sex.

Journal Article Neurourol Urodyn · June 2025 AIMS: To present the methods and baseline findings from a prospective, longitudinal cohort study of treatment seeking adults with urinary urgency (URG) with or without urgency urinary incontinence (UUI). METHODS: Adults seeking treatment for URG and/or UUI ... Full text Link to item Cite

Expanded Physiological Testing of the Lower Urinary Tract in Asymptomatic Women and Those With Urgency Urinary Incontinence: Findings From the LURN-Organ Study.

Journal Article Neurourol Urodyn · June 2025 PURPOSE: To investigate sensory and motor function of the bladder and urethra in women with and without urgency urinary incontinence (UUI). MATERIALS AND METHODS: Treatment-seeking women with UUI and healthy, asymptomatic, nontreatment seeking controls enr ... Full text Link to item Cite

Effectiveness of educational interventions for the prevention of lead poisoning in children: a systematic review.

Journal Article Rev Environ Health · March 26, 2025 INTRODUCTION: Childhood exposure to lead has severe health consequences including long-term physical, behavioral, and learning problems. Lead poisoning often occurs in the home and persists as a form of environmental injustice, disparately impacting certai ... Full text Link to item Cite

Effect of fathers in Preemie Prep for Parents (P3) program on couple's preterm birth preparedness.

Journal Article Patient Educ Couns · March 2025 OBJECTIVE: Evaluate the effect of fathers' participation in the Preemie Prep for Parents (P3) program on maternal learning and fathers' preterm birth knowledge. METHODS: Mothers with preterm birth predisposing medical condition(s) enrolled with or without ... Full text Link to item Cite

Use of central venous access devices outside of the pediatric intensive care units.

Journal Article Pediatr Res · February 2025 BACKGROUND: Central venous access devices (CVAD) are associated with central line associated bloodstream infection (CLABSI) and venous thromboembolism (VTE). We identified trends in non-intensive care unit (ICU) CVAD utilization, described complication rat ... Full text Link to item Cite

The association of distress and depression screening measures and other electronic health record information with adjuvant endocrine therapy persistence.

Journal Article Breast Cancer Res Treat · February 2025 PURPOSE: Few risk factors for early adjuvant endocrine discontinuation have been identified, but clinical trials suggest pre-AET symptom burden might be important. We sought to assess this in an academic practice. METHODS: We examined baseline and up to fi ... Full text Link to item Cite

Comparing Midline and Peripherally Inserted Central Catheters: A Randomized Feasibility Trial.

Journal Article Hosp Pediatr · February 1, 2025 OBJECTIVES: The most effective use of midline catheters in children is not understood. We aimed to (1) test the feasibility of a trial comparing peripherally inserted central catheters (PICCs) to midline catheters in hospitalized children in need of durabl ... Full text Link to item Cite

A Patient-Prioritized Research Agenda for Clinical Trials in Kidney Stone Disease.

Journal Article J Urol · January 2025 PURPOSE: To ensure that research on kidney stones provides meaningful impact for the kidney stone community, patients and caregivers should be engaged as stakeholders in clinical trial design, starting at study inception. This project aimed to elicit, refi ... Full text Link to item Cite

Addressing Colorectal Cancer Among Alaska Native Peoples: A Community and Subject Matter Expert Symposium

Conference Gastro Hep Advances · January 1, 2025 Background and Aims: Alaska Tribal health organizations are working to increase colorectal cancer (CRC) prevention and control as well as awareness of its impact among Alaska Native peoples, who have the highest rates of CRC in the world. Methods: The Alas ... Full text Cite

Lack of group-to-individual generalizability in people with lower urinary tract symptoms emphasizes the need for deep phenotyping and personalized treatments.

Journal Article J Clin Transl Sci · 2025 INTRODUCTION: Understanding how different symptoms co-occur and are correlated may provide insights into the pathophysiology of disease. The lack of group-to-individual generalizability of co-occurrence of symptoms was recently demonstrated by comparing in ... Full text Link to item Cite

U.S. Expert Consensus on Defining Intolerance to Tyrosine Kinase Inhibitor Treatment in Chronic Phase Chronic Myeloid Leukemia (CML)

Conference Blood · November 5, 2024 Introduction: The incidence of CML in the United States (U.S) is 1-2 cases per 100,000 persons per year and the prevalence has risen, in part due to the effectiveness of BCR-ABL1 tyrosine ... Full text Cite

First Results of Asciminib As Initial Therapy with Addition of Lower Dose Tyrosine Kinase Inhibitors for Patients with Chronic Myeloid Leukemia Who Do Not Achieve a Deep Molecular Remission (ALERT CML) from the H Jean Khoury Cure CML Consortium (HJKC3)

Conference Blood · November 5, 2024 Background: Although tyrosine kinase inhibitors (TKIs) have dramatically improved the outcome of patients (pts) with CML, further improvements are needed in efficacy, reduction in AEs, an ... Full text Cite

Impact of Adverse Events on Health-Related Quality of Life in Patients with Chronic Myeloid Leukemia (CML) Treated with Tyrosine Kinase Inhibitors (TKIs) - Early Results of the Survey on Humanistic Burden of Intolerance to First or Second TKIs (SHIFT) Study

Conference Blood · November 5, 2024 INTRODUCTION:Patients with chronic phase CML (CP-CML) treated with first- (1G) or second-generation (2G) TKIs as their first or second treatment often ... Full text Cite

Developing a urinary incontinence primary care pathway: a mixed methods study.

Journal Article Fam Pract · October 8, 2024 BACKGROUND: While nearly 50% of adult women report at least one episode of urinary incontinence (UI), most never receive treatment. OBJECTIVE: To better integrate primary and specialty UI care, we conducted (i) an environmental scan to assess the availabil ... Full text Link to item Cite

Patient Perspectives in the Diagnosis and Treatment of Gallstone Disease: A Qualitative Analysis.

Journal Article J Surg Res · October 2024 INTRODUCTION: Gallstone disease is one of the most common surgical diagnoses in the United States. Notably absent from the literature is the patient's perspective on priorities in management. Understanding patient values will assist surgeons and systems in ... Full text Link to item Cite

Abstract B068: Physical function and fitness of African American prostate cancer survivors at baseline of Men Moving Forward, a lifestyle intervention program

Conference Cancer Epidemiology, Biomarkers & Prevention · September 21, 2024 AbstractBackground: Prostate cancer (PC) is the most commonly diagnosed cancer in American men with 1 in 8 men diagnosed in their lifetime. African American men have the highest rates of incidence and mortal ... Full text Cite

Current Trends and Outcomes in Cellular Therapy Activity in the United States, Including Prospective Patient-Reported Outcomes Data Collection in the Center for International Blood and Marrow Transplant Research Registry.

Journal Article Transplantation and cellular therapy · September 2024 The Center for International Blood and Marrow Transplant Research (CIBMTR) prepares an annual set of summary slides to summarize the trends in transplantation and cellular therapies. For the first time in the 2023 summary slides, the CIBMTR incorporated da ... Full text Cite

Structural Changes in Brain White Matter Tracts Associated With Overactive Bladder Revealed by Diffusion Tensor Magnetic Resonance Imaging: Findings From a Symptoms of Lower Urinary Tract Dysfunction Research Network Cross-Sectional Case-Control Study.

Journal Article J Urol · August 2024 PURPOSE: Our objective was to investigate structural changes in brain white matter tracts using diffusion tensor imaging (DTI) in patients with overactive bladder (OAB). MATERIALS AND METHODS: Treatment-seeking OAB patients and matched controls enrolled in ... Full text Link to item Cite

Development and initial validation of the AL-PROfile patient-reported outcome measure in light chain (AL) amyloidosis.

Journal Article Eur J Haematol · June 2024 OBJECTIVE: To evaluate the psychometric properties of the AL-PROfile, a patient-reported outcome measure combining the Patient-Reported Outcomes Measurement Information System (PROMIS)-29, two items from PROMIS Cognitive Function, and select Patient-Report ... Full text Link to item Cite

Incorporating patient-reported outcome data into a predictive calculator for allogeneic hematopoietic cell transplantation recipients.

Journal Article Cancer · May 15, 2024 BACKGROUND: The Center for International Blood and Marrow Transplant Research (CIBMTR) provides a 1-year overall survival calculator to estimate outcomes for individual patients before they undergo allogeneic hematopoietic cell transplantation (HCT) to inf ... Full text Link to item Cite

Referral and Prescription Patterns for Female Patients With Urinary Incontinence.

Journal Article Urogynecology (Phila) · May 1, 2024 IMPORTANCE: Although behavioral modifications, medications, and other interventions can improve urinary incontinence (UI), many women never receive them. OBJECTIVES: To better characterize UI treatment patterns in primary care, we examined prescriptions an ... Full text Link to item Cite

Adherence to adjuvant endocrine therapy for breast cancer: a qualitative exploration of attribution of symptoms among post-menopausal women.

Journal Article Support Care Cancer · April 2, 2024 PURPOSE: Oral adjuvant endocrine therapy (AET) is an effective treatment for hormone receptor positive breast cancer to decrease recurrence and mortality, but adherence is poor. This study explored post-menopausal women's experiences with AET, with a parti ... Full text Link to item Cite

Symptom clusters and their impact on quality of life in multiple myeloma survivors: Secondary analysis of BMT CTN 0702 trial.

Journal Article Br J Haematol · April 2024 Autologous haematopoietic cell transplantation (autoHCT) and continuous post-transplant maintenance therapy are the standard of care in transplant-eligible multiple myeloma (MM) patients. We sought to describe symptom burden and identify symptom clusters o ... Full text Link to item Cite

Estimated Savings After Stopping Tyrosine Kinase Inhibitor Treatment Among Patients With Chronic Myeloid Leukemia.

Journal Article JAMA Netw Open · December 1, 2023 IMPORTANCE: Patients with chronic myeloid leukemia (CML) who have a sustained deep molecular response using tyrosine kinase inhibitors (TKIs) can safely attempt to stop their use. As these medications are very costly, this change in treatment protocols may ... Full text Link to item Cite

Abstract A106: Examining the role of social connection on allostatic load and quality of life in African American prostate cancer survivors

Conference Cancer Epidemiology, Biomarkers & Prevention · December 1, 2023 AbstractBackground. Racial disparities in prostate cancer (PC) survivorship persist despite clinical advancements. Chronic stress may contribute to these disparities, with allostatic load (AL) considered a m ... Full text Cite

Decision regret among couples experiencing infertility: a mixed methods longitudinal cohort study.

Journal Article Reprod Health · November 9, 2023 BACKGROUND: Decisions for how to resolve infertility are complex and may lead to regret. We examined whether couples and individuals who sought a consultation from a reproductive specialist for infertility later expressed decisional regret about their fami ... Full text Link to item Cite

HJKC3-0006: Outcome of Patients with CML Treated on Second Line or Later Therapy in Routine Clinical Practice

Conference Blood · November 2, 2023 Background: First-line therapies for chronic-phase (CP) CML include the tyrosine kinase inhibitors(TKIs) dasatinib, nilotinib, bosutinib or imatinib, while ponatinib and asciminib are indicated only in later lines. Ther ... Full text Cite

HJKC3-007: Outcomes of Patients with Chronic Myeloid Leukemia in Chronic Phase Treated with Asciminib and Other Tyrosine Kinase Inhibitors in Routine Clinical Practice

Conference Blood · November 2, 2023 Background and significance: There are typically high response rates to first line TKI therapies in chronic phase chronic myeloid leukemia (CP-CML). However, responses in later lines (second line and beyond) are diminis ... Full text Cite

Differences in patient-reported outcomes (PROs) by disease severity in light chain (AL) amyloidosis.

Journal Article Eur J Haematol · October 2023 OBJECTIVE: To assess the impact of organ involvement on patient-reported outcomes (PROs) in light chain (AL) amyloidosis. METHODS: PROs were evaluated using the KCCQ-12, PROMIS-29 + 2, and SF-36 in individuals with AL amyloidosis. The 2004 Mayo system was ... Full text Link to item Cite

GAP (gestational diabetes and pharmacotherapy) - study protocol for a randomized controlled, two-arm, single-site trial.

Journal Article Contemp Clin Trials · August 2023 BACKGROUND: Gestational diabetes (GDM) complicates 10% of pregnancies in the US. First-line treatment is medical nutrition therapy (MNT) and exercise. Second line is pharmacotherapy. The definition of what constitutes an unsuccessful trial of MNT and exerc ... Full text Link to item Cite

Smartphone-Based Video Antenatal Preterm Birth Education: The Preemie Prep for Parents Randomized Clinical Trial.

Journal Article JAMA Pediatr · July 31, 2023 IMPORTANCE: Preterm birth is a leading cause of infant mortality and child morbidity. Preterm birth is not always unexpected, yet standard prenatal care does not offer anticipatory education to parents at risk of delivering preterm, which leaves parents un ... Full text Link to item Cite

Elevated blood lead levels of refugee children in the United States: a systematic review of recent literature (2011-2021).

Journal Article Rev Environ Health · June 27, 2023 Lead is an environmental hazard; even small elevations in blood lead level can cause serious negative health effects in children, including irreversible impacts such as learning difficulties, attention disorders, and behavioral issues. Previous research ha ... Full text Link to item Cite

A cross-sectional study of patient-reported outcomes and symptom burden using PROMIS and PRO-CTCAE measures in light chain amyloidosis.

Journal Article Qual Life Res · June 2023 BACKGROUND: We conducted a cross-sectional study to characterize health-related quality of life and symptom burden in individuals living with light chain (AL) amyloidosis. METHODS: Members of the Amyloidosis Support Groups, Inc. with AL amyloidosis who con ... Full text Link to item Cite

Lead poisoning in refugee children living in the United States: A systematic review of case studies

Journal Article Hygiene and Environmental Health Advances · June 1, 2023 Background: Exposure to the heavy metal lead (Pb) has serious adverse health effects, particularly in children. Refugee children resettled in the United States are disparately impacted by lead. Research indicates that both pre-migration and post-migration ... Full text Cite

Patient-reported cognitive function among hematopoietic stem cell transplant and cellular therapy patients: a scoping review.

Journal Article Qual Life Res · April 2023 PURPOSE: Cognitive dysfunction is a known complication following cellular therapies (CT), which can be assessed through performance based and patient-reported measures. We performed a systematic scoping review to assess self-reported cognitive function mea ... Full text Link to item Cite

Multi-Stakeholder Qualitative Interviews to Inform Measurement of Patient Reported Outcomes After CAR-T.

Journal Article Transplant Cell Ther · April 2023 Toxicities after chimeric antigen receptor T cell (CAR-T) therapy are well known, yet the patient experience during and after CAR-T therapy has not been well described outside of the trial setting. We explored the patient experience after CAR-T therapy to ... Full text Link to item Cite

Multimedia tablet or paper handout to supplement counseling during preterm birth hospitalization: a randomized controlled trial.

Journal Article American journal of obstetrics & gynecology MFM · April 2023 BackgroundParents of premature infants engage in shared decision-making regarding the care of their infant. The process of prenatal counseling typically involves a verbal conversation with a neonatal provider during hospitalization. Support people ... Full text Cite

Breast sensorisexual function: a novel patient-reported outcome measure of sexual sensory functions of the breast.

Journal Article The journal of sexual medicine · April 2023 BackgroundA validated measure assessing sexual sensory functions of the breast is needed to optimize sexual and other health outcomes after breast procedures.AimTo describe the development of a patient-reported outcome measure (PROM) to a ... Full text Cite

Comparison of CAT and short forms for PROMIS pain and physical health domains in children with sickle cell disease.

Journal Article J Patient Rep Outcomes · February 14, 2023 BACKGROUND: Pain and physical health domains included in Patient-Reported Outcomes Measurement Information System® (PROMIS®) can be administered as short forms (SF) or as computer adaptive tests (CAT). CAT is ideal in many settings but cannot be administer ... Full text Link to item Cite

Health-related quality of life in reduced-intensity hematopoietic cell transplantation based on donor availability in patients aged 50-75 with advanced myelodysplastic syndrome: BMT CTN 1102.

Journal Article Am J Hematol · February 2023 For myelodysplastic syndrome (MDS), allogeneic hematopoietic cell transplantation (alloHCT) is the only available curative therapy. The Blood and Marrow Transplant Clinical Trials Network study 1102 (BMT CTN 1102, NCT02016781) was a multicenter, biologic a ... Full text Link to item Cite

Psychometric evaluation of the Swedish version of the PROMIS Sexual Function and Satisfaction Measures in clinical and nonclinical young adult populations.

Journal Article Sex Med · February 2023 BACKGROUND: The Patient-Reported Outcomes Measurement Information System (PROMIS®) Sexual Function and Satisfaction (SexFS) version 2.0 measurement tool was developed to assess sexual functioning and satisfaction in the general population regardless of hea ... Full text Link to item Cite

Trajectories of quality of life recovery and symptom burden after autologous hematopoietic cell transplantation in multiple myeloma.

Journal Article Am J Hematol · January 2023 Early autologous hematopoietic cell transplantation (AHCT) with post-transplant maintenance therapy is standard of care in multiple myeloma (MM). While short-term quality of life (QOL) deterioration after AHCT is known, the long-term trajectories and sympt ... Full text Link to item Cite

Associations between Relationship Status, Anxiety, Sexual Function, and Sexual Satisfaction in Lesbian, Gay, and Bisexual People

Journal Article International Journal of Sexual Health · January 1, 2023 Objectives: The purpose of this study was to describe associations between relationship status, anxiety, and sexual function and satisfaction in lesbian, gay, and bisexual (LGB) adults. Methods: Linear regression determined associations between sexual func ... Full text Cite

A Survey of Patient Experience in CML: American and Canadian Perspectives.

Journal Article Patient Prefer Adherence · 2023 PURPOSE: With treatment, chronic myeloid leukemia (CML) has a favorable prognosis, however, individuals with CML experience impairment to their quality of life (QoL). The aim of this study was to examine the perspectives and experiences of individuals with ... Full text Link to item Cite

Abstract B032: Diet quality and physical activity of African American prostate cancer survivors at baseline of Men Moving Forward, a lifestyle intervention program

Conference Cancer Epidemiology, Biomarkers & Prevention · January 1, 2023 AbstractBackground: In the United States, approximately 41,600 new cases of prostate cancer will be diagnosed in Black/African American men in 2022. Lifestyle can impact cancer survivorship, including recurr ... Full text Cite

Abstract A034: Health-related quality of life among African American prostate cancer survivors enrolled in a lifestyle intervention program

Conference Cancer Epidemiology, Biomarkers & Prevention · January 1, 2023 AbstractBackground: Prostate cancer (PC) is the most diagnosed non-skin cancer among men in the United States, with African American (AA) men experiencing the highest incidence of all racial/ethnic groups. S ... Full text Cite

Patient Priorities in the Treatment of Gallstone Disease: A Qualitative Analysis

Conference JOURNAL OF THE AMERICAN COLLEGE OF SURGEONS · 2023 Cite

Exploring health behaviors and the feasibility of a lifestyle intervention for patients with multiple myeloma.

Journal Article Support Care Cancer · December 2022 PURPOSE: Multiple myeloma (MM) is the second most common hematologic malignancy in the USA, with higher rates observed in older adults and African Americans (AA). Survivors experience fatigue, bone pain, reduced functioning, and obesity, highlighting the v ... Full text Link to item Cite

Patient-reported barriers and facilitators for intermittent pneumatic compression device use on the antepartum unit.

Journal Article J Matern Fetal Neonatal Med · December 2022 OBJECTIVE: To examine patient barriers to intermittent pneumatic compression (IPC) device compliance during antepartum hospital admissions. METHODS: This was a prospective survey study of a diverse group of pregnant patients who were admitted to the antepa ... Full text Link to item Cite

Patient- and physician-reported pain after tyrosine kinase inhibitor discontinuation among patients with chronic myeloid leukemia.

Journal Article Haematologica · November 1, 2022 For patients with optimally treated chronic myeloid leukemia (CML), discontinuation of tyrosine kinase inhibitor (TKI) therapy can lead to treatment-free remission. In previous trials, TKI discontinuation has been associated with increased musculoskeletal ... Full text Link to item Cite

Comparing clinical bladder diaries and recalled patient reports for measuring lower urinary tract symptoms in the symptoms of Lower Urinary Tract Dysfunction Research Network (LURN).

Journal Article Neurourol Urodyn · November 2022 PURPOSE: Bladder diaries are a key source of information about lower urinary tract symptoms (LUTS); however, many patients do not complete them as instructed. Questionnaire-based patient-reported outcome measures (PROMs) are another option for reporting LU ... Full text Link to item 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

Impact of Sleep Disturbance, Physical Function, Depression and Anxiety on Male Lower Urinary Tract Symptoms: Results from the Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN).

Journal Article J Urol · July 2022 PURPOSE: The impact of nonurological factors on male lower urinary tract symptoms (LUTS) remains unclear. We investigated cross-sectional and longitudinal associations among anxiety, depression, physical function, sleep quality and urinary symptom subdomai ... Full text Link to item Cite

Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis.

Journal Article J Sex Med · May 2022 BACKGROUND: Sexual dysfunction is a common symptom of multiple sclerosis (MS). Clinically meaningful and psychometrically sound measures of sexual function validated in people with MS are necessary to identify people with MS who experience problems with se ... Full text Link to item Cite

Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living with Multiple Sclerosis.

Journal Article J Sex Med · May 1, 2022 BACKGROUND: Sexual dysfunction is a common symptom of multiple sclerosis (MS). Clinically meaningful and psychometrically sound measures of sexual function validated in people with MS are necessary to identify people with MS who experience problems with se ... Full text Link to item Cite

Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study.

Journal Article Qual Life Res · April 2022 BACKGROUND: Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of pati ... Full text Link to item Cite

Adding Centralized Electronic Patient-Reported Outcome Data Collection to an Established International Clinical Outcomes Registry.

Journal Article Transplant Cell Ther · February 2022 The importance of patient-reported outcomes (PROs) in cellular therapies, including hematopoietic cell transplantation (HCT) is highlighted in this study. Longitudinal collection of PROs in a registry is recommended for several reasons, yet to date, PROs a ... Full text Link to item Cite

Patient-Reported Functional Outcomes in Patients With Chronic Myeloid Leukemia After Stopping Tyrosine Kinase Inhibitors.

Journal Article J Natl Cancer Inst · January 11, 2022 Treatment-free remission (TFR) is a goal for patients with chronic myeloid leukemia (CML). Functional outcomes after discontinuing tyrosine kinase inhibitor (TKI) treatment have not been described. Patient-Reported Outcomes Measurement Information System ( ... Full text Link to item Cite

Feasibility of a pharmacist-led symptom monitoring and management intervention to improve breast cancer endocrine therapy adherence.

Journal Article J Am Pharm Assoc (2003) · 2022 BACKGROUND: Adjuvant endocrine therapy (AET) for breast cancer reduces mortality, but one-third to one-half of patients discontinue it early or are nonadherent. OBJECTIVE: We developed a pilot single-site study of patients with evidence of early nonadheren ... Full text Link to item Cite

Effective questionnaire design: How to use cognitive interviews to refine questionnaire items.

Journal Article J Neonatal Perinatal Med · 2022 BACKGROUND: Cognitive interviewing is a technique that can be used to improve and refine questionnaire items. We describe the basic methodology of cognitive interviewing and illustrate its utility through our experience using cognitive interviews to refine ... Full text Link to item Cite

Health-Related Quality of Life of Patients with Chronic Myeloid Leukemia as Measured by Patient-Reported Outcomes: Current State and Future Directions.

Journal Article Curr Hematol Malig Rep · December 2021 PURPOSE OF REVIEW: Tyrosine kinase inhibitors (TKIs) allow many patients with chronic myeloid leukemia (CML) to live normal life spans but have the potential to impact patients' health-related quality of life (HRQOL). Patient-reported outcome (PRO) measure ... Full text Link to item Cite

Health-Related Quality of Life in a Biologic Assignment Trial of Reduced Intensity Hematopoietic Cell Transplantation Based on Donor Availability in Patients Aged 50-75 with Advanced Myelodysplastic Syndrome

Conference Blood · November 5, 2021 AbstractIntroductionThe Blood and Marrow Transplant Clinical Trials Network study (BMT CTN 1102, NCT02016781) was a multicenter, biologic assignment trial in older adults age ... Full text Cite

Do PROs Tell the Whole Story? Differential Outcomes Based on Patient-Reported Outcomes (PROs) Versus Performance-Based Metrics (PBM) on Cognition for Patients Receiving Chimeric Antigen Receptor (CAR)-T Cell Therapy

Conference Blood · November 5, 2021 AbstractIntroduction: As the use of CAR-T cell therapy grows, there is an increased need to understand its impact on the patient experience, especially symptom burden and cognitive function. While the immedi ... Full text Cite

Worsening Financial Toxicity Among Patients Receiving Chimeric Antigen Receptor t-Cell (CAR-T) Therapy: A Mixed Methods Longitudinal Study

Conference Blood · November 5, 2021 AbstractIntroduction: CAR-T cell therapy is associated with extra-ordinary costs with estimates of as much as $1.5 million in some patients, including the high list-price for the CAR-T product, additional co ... Full text Cite

Impact of Pre-visit Contextual Data Collection on Patient-Physician Communication and Patient Activation: a Randomized Trial.

Journal Article J Gen Intern Med · November 2021 BACKGROUND: Patient contextual data (PCD) are often missing from electronic health records, limiting the opportunity to incorporate preferences and life circumstances into care. Engaging patients through tools that collect and summarize such data may impro ... Full text Link to item Cite

Correspondence Between Clinician Ratings of Vulvovaginal Health and Patient-Reported Sexual Function After Cancer.

Journal Article The journal of sexual medicine · October 2021 BackgroundTools for diagnosing sexual dysfunction and for tracking outcomes of interest include clinician interviews, physical exam, and patient self-report. Limited work has described relationships among these three sources of information regardi ... Full text Cite

Correspondence Between Clinician Ratings of Vulvovaginal Health and Patient-Reported Sexual Function After Cancer.

Journal Article J Sex Med · October 1, 2021 BACKGROUND: Tools for diagnosing sexual dysfunction and for tracking outcomes of interest include clinician interviews, physical exam, and patient self-report. Limited work has described relationships among these three sources of information regarding fema ... Full text Link to item Cite

Biobehavioral Research and Hematopoietic Stem Cell Transplantation: Expert Review from the Biobehavioral Research Special Interest Group of the American Society for Transplantation and Cellular Therapy.

Journal Article Transplant Cell Ther · September 2021 Hematopoietic stem cell transplantation (HCT) is a potentially curative treatment for many hematologic conditions. Despite advances in conditioning and supportive measures, however, there remain significant comorbidities that threaten survivorship. Adverse ... Full text Link to item Cite

Information Order for Periviable Counseling: Does It Make a Difference?

Journal Article J Pediatr · August 2021 OBJECTIVES: To examine whether the order of presenting survival vs disability information, with or without the description of infant neonatal intensive care unit (NICU) experiences would influence treatment choice during hypothetical periviable birth couns ... Full text Link to item Cite

Influences of health and environmental deprivation on family relationships among children with chronic disease.

Journal Article Qual Life Res · May 2021 PURPOSE: Families play a key role in managing chronic illness. Among chronically ill children, we describe the Patient-Reported Outcomes Measurement Information System (PROMIS) Family Relationships measure over time and its associations with sociodemograph ... Full text Link to item Cite

Prevalence of childhood trauma and its association with lower urinary tract symptoms in women and men in the LURN study.

Conference Neurourol Urodyn · February 2021 AIMS: To describe the association between childhood traumas (death of a family member, severe illness, sexual trauma, parental separation) reported by women and men and lower urinary tract symptoms (LUTS). METHODS: In this secondary analysis of the Lower U ... Full text Link to item Cite

Aromatase Inhibitor Symptom Management Practices: A Retrospective Study.

Journal Article Clin Breast Cancer · February 2021 PURPOSE: Aromatase inhibitor (AI)-associated symptoms contribute to early therapy discontinuation. Although guidelines exist for management of these symptoms, little is known about the degree to which physicians address symptoms and adhere to the guideline ... Full text Link to item Cite

Changes in patient-reported outcomes in light chain amyloidosis in the first year after diagnosis and relationship to NT-proBNP change.

Journal Article Blood Cancer J · February 1, 2021 We conducted a prospective cohort study in newly diagnosed systemic light chain (AL) amyloidosis patients (N = 59) to study patient-reported outcomes (PROs) through the first year. The median age was 68 years with 42% female, 8% Black, and 78% lambda subty ... Full text Link to item Cite

Assessment of Outcomes After Stopping Tyrosine Kinase Inhibitors Among Patients With Chronic Myeloid Leukemia: A Nonrandomized Clinical Trial.

Journal Article JAMA Oncol · January 1, 2021 IMPORTANCE: Tyrosine kinase inhibitors (TKIs) have been associated with improved survival of patients with chronic myeloid leukemia (CML) but are also associated with adverse effects, especially fatigue and diarrhea. Discontinuation of TKIs is safe and is ... Full text Link to item Cite

Relationship of symptom severity and bother in individuals seeking care for lower urinary tract symptoms.

Journal Article Neurourol Urodyn · November 2020 AIMS: Bother attributed to lower urinary tract symptoms (LUTS) drives care-seeking and treatment aggressiveness. The longitudinal relationship of LUTS severity and bother in a care-seeking cohort, however, is not well understood. We aim to conduct a longit ... Full text Link to item Cite

The Impact of Previsit Contextual Data Collection on Patient-Provider Communication and Patient Activation: Study Protocol for a Randomized Controlled Trial.

Journal Article JMIR Res Protoc · September 23, 2020 BACKGROUND: Patient-centered care is respectful of and responsive to individual patient preferences, needs, and values. To provide patient-centered care, clinicians need to know and incorporate patients' context into their communication and care with patie ... Full text Link to item Cite

Designing a tablet-based prematurity education app for parents hospitalized for preterm birth.

Journal Article Int J Med Inform · September 2020 BACKGROUND: As technology has advanced over the last decade, handheld Mobile Health (mHealth) applications have increased in popularity. Pregnancy is one area of mHealth that has rapidly expanded, however very few pregnancy apps are developed in collaborat ... Full text Link to item Cite

Patient demographic and psychosocial characteristics associated with 30-day recall of self-reported lower urinary tract symptoms.

Journal Article Neurourol Urodyn · September 2020 AIMS: Measurement of self-reported lower urinary tract symptoms (LUTS) typically uses a recall period, for example, "In the past 30 days…." Compared to averaged daily reports, 30-day recall is generally unbiased, but recall bias varies by item. We examined ... Full text Link to item Cite

Parental understanding of crucial medical jargon used in prenatal prematurity counseling.

Journal Article BMC Med Inform Decis Mak · July 22, 2020 BACKGROUND: Parent-clinician shared decision making is the recommended model for the care of premature infants; thus, clinicians provide prenatal prematurity counseling to parents in the event of a mother's hospitalization for premature birth. However, par ... Full text Link to item Cite

Exploring health behaviors, quality of life, and support needs in African-American prostate cancer survivors: a pilot study to support future interventions.

Journal Article Support Care Cancer · July 2020 PURPOSE: Prostate cancer incidence and mortality rates are highest among African-American men. Comorbidity burden and quality of life (QOL) challenges are also high. Many factors drive these differences; health behaviors are important modifiable contributo ... Full text Link to item Cite

The use of PROMIS patient-reported outcomes (PROs) to inform light chain (AL) amyloid disease severity at diagnosis.

Journal Article Amyloid · June 2020 We sought to evaluate how PROMIS patient-reported outcome (PRO) measures correlated with disease characteristics in systemic light chain (AL) amyloidosis patients at diagnosis. Newly diagnosed AL patients were recruited at two centres (N = 61). Patients co ... Full text Link to item Cite

Prevalence of decisional regret among patients who underwent allogeneic hematopoietic stem cell transplantation and associations with quality of life and clinical outcomes.

Journal Article Cancer · June 1, 2020 BACKGROUND: Allogeneic hematopoietic stem cell transplantation (alloHCT) is potentially curative but with known negative effects on quality of life. In the current study, the authors investigated whether patients expressed regret after undergoing HCT and t ... Full text Link to item Cite

Adjuvant doxycycline to enhance anti-amyloid effects: Results from the dual phase 2 trial.

Journal Article EClinicalMedicine · June 2020 BACKGROUND: Although, doxycycline use is associated with improved outcomes in amyloidosis in retrospective studies, evidence from clinical trials is limited. METHODS: This phase 2 trial of doxycycline (clinicaltrials.gov: NCT02207556) in newly diagnosed li ... Full text Link to item Cite

Abstract B006: Developing Men Moving Forward, a lifestyle intervention for African American prostate cancer survivors

Conference Cancer Epidemiology, Biomarkers & Prevention · June 1, 2020 AbstractAfrican American men are disproportionally affected by high prostate cancer incidence and mortality, and also comorbidities. African American prostate cancer survivors (AAPCS) report lower quality of ... Full text Cite

The impact of patient-generated contextual data on communication in clinical practice: A qualitative assessment of patient and clinician perspectives.

Journal Article Patient Educ Couns · April 2020 BACKGROUND: Effective communication is integral to patient-centered care, yet external pressures can impede the ability to discuss important topics. One strategy to facilitate communication is pre-visit collection and sharing of patient contextual data (PC ... Full text Link to item Cite

In Reply.

Other Oncologist · April 2020 This letter to the editor responds to recent comments by Strohbehn and Daugherty in Mistaking the Trees for the Forest. ... Full text Link to item Cite

Decisional conflict among couples seeking specialty treatment for infertility in the USA: a longitudinal exploratory study.

Journal Article Hum Reprod · March 27, 2020 STUDY QUESTION: What are couples' decisional conflicts around family-building approaches before and after seeking a specialty consultation for infertility? SUMMARY ANSWER: Decisional conflict is high among couples before an initial specialty consultation f ... Full text Link to item Cite

Incorporating patient-generated contextual data into care: Clinician perspectives using the Consolidated Framework for Implementation Science.

Journal Article Healthc (Amst) · March 2020 Patient contextual data (PCD), defined as patient's values, environment, or behavior influencing health, are essential to the proper care of patients, yet often are missing in the electronic health record (EHR). The current EHR structures and practice dema ... Full text Link to item Cite

Reliability and validity of PROMIS® pediatric family relationships short form in children 8-17 years of age with chronic disease.

Conference Qual Life Res · January 2020 PURPOSE: Families play a key role in managing pediatric chronic illness. The PROMIS® pediatric family relationships measure was developed primarily within the general pediatric population. We evaluated the Family Relationships short form in the context of ... Full text Link to item Cite

A New Brief Clinical Assessment of Lower Urinary Tract Symptoms for Women and Men: LURN SI-10.

Journal Article J Urol · January 2020 PURPOSE: Lower urinary tract symptoms are common in men and women. Members of the LURN (Lower Urinary Tract Dysfunction Research Network) sought to create a brief, clinically relevant tool to improve existing measurements of lower urinary tract symptoms in ... Full text Link to item Cite

Patient-Reported Neuropsychiatric Outcomes of Long-Term Survivors after Chimeric Antigen Receptor T Cell Therapy.

Journal Article Biol Blood Marrow Transplant · January 2020 CD19-targeted chimeric antigen receptor (CAR) modified T cell immunotherapy is a novel treatment with promising results in patients with relapsed/refractory lymphoid malignancies. CAR T cell therapy has known early toxicities of cytokine release syndrome a ... Full text Link to item Cite

Longitudinal changes in symptom-based female and male LUTS clusters.

Journal Article Neurourol Urodyn · January 2020 AIMS: Lower urinary tract symptoms (LUTS) are diverse in type and variable in severity. We examined symptom change within the Symptoms of the Lower Urinary Tract Dysfunction Research Network (LURN) Observational Cohort study identified clusters over time a ... Full text Link to item Cite

The association of pharmacy fill synchronization with breast cancer endocrine therapy adherence.

Journal Article Cancer · November 15, 2019 BACKGROUND: One-third to one-half of patients prescribed adjuvant endocrine therapy are nonadherent during the recommended 5-year endocrine therapy course. This study investigated whether poor pharmacy synchronization of medication fills (requiring refills ... Full text Link to item Cite

Patient-Reported Outcome Results from the U.S. Life after Stopping TKIs (LAST) Study in Patients with Chronic Myeloid Leukemia

Conference Blood · November 13, 2019 Background: Treatment of chronic myeloid leukemia (CML) with a tyrosine kinase inhibitor (TKI) offers significant improvements over previous treatments in terms of survival and toxicity yet has been associated with reduced health-related quality of ... Full text Cite

Building a National CML Registry

Conference Blood · November 13, 2019 Background:Tyrosine kinase inhibitor (TKI) therapy has led to phenomenal improvement in overall survival for patients with CML. Since TKI therapies were introduced and their results observed, very little innovative ... Full text Cite

Patient-Reported Neuropsychiatric Outcomes of Long-Term Survivors after Chimeric Antigen Receptor (CAR)-T Cell Therapy

Conference Blood · November 13, 2019 CD19-targeted chimeric antigen receptor (CAR)-T cell therapy is a novel treatment with promising results for patients with relapsed/refractory lymphoid malignancies. CAR-T cell therapy has known early toxicities of cytokine release syndrome (CRS) a ... Full text Cite

Sexual Orientation and Patient-Provider Communication About Sexual Problems or Concerns Among US Adults.

Journal Article J Gen Intern Med · November 2019 BACKGROUND: Limited patient-provider communication about sexual health is a crucial barrier to patients receiving treatment for sexual problems, and little is known about how patient sexual orientation is associated with patient-provider communication abou ... Full text Link to item Cite

Can 7 or 30-Day Recall Questions Capture Self-Reported Lower Urinary Tract Symptoms Accurately?

Journal Article J Urol · October 2019 PURPOSE: Self-reported measurement tools often provide a recall period, eg "In the past 7 days…" For lower urinary tract symptoms the concordance of end of day (daily) reports with 7 and 30-day recalled reports is unknown to our knowledge. We evaluated how ... Full text Link to item Cite

Exploring Patient Decision Making Regarding Discontinuation of Tyrosine Kinase Inhibitors for Chronic Myeloid Leukemia.

Journal Article Oncologist · September 2019 BACKGROUND: The standard treatment for chronic phase chronic myeloid leukemia (CML) is lifelong oral tyrosine kinase inhibitor (TKI) therapy. Multiple clinical trials have demonstrated that some patients with a sustained deep molecular response to TKI ther ... Full text Link to item Cite

A new outcome measure for LUTS: Symptoms of Lower Urinary Tract Dysfunction Research Network Symptom Index-29 (LURN SI-29) questionnaire.

Journal Article Neurourol Urodyn · August 2019 AIMS: To develop a representative, self-report assessment of lower urinary tract symptoms (LUTS) for men and women, the symptoms of Lower Urinary Tract Dysfunction Research Network Symptom Index-29 (LURN SI-29). METHODS: Women and men seeking treatment for ... Full text Link to item Cite

Too much time? Time use and fertility-specific quality of life among men and women seeking specialty care for infertility.

Journal Article BMC Psychol · July 9, 2019 BACKGROUND: There are known gender differences in the impacts infertility has on quality of life and well-being. Less is known about how infertile couples spend time on fertility-related tasks and associations with quality of life. The purpose of this stud ... Full text Open Access Link to item Cite

Sexual Dysfunction and Reproductive Concerns in Young Men Diagnosed With Testicular Cancer: An Observational Study.

Journal Article J Sex Med · July 2019 INTRODUCTION: The survival rates for testicular cancer are excellent; still, there is a lack of knowledge regarding important survivorship issues, such as sexual dysfunction and reproductive concerns. AIM: The aim of this study was to investigate the preva ... Full text Link to item Cite

The Comprehensive Assessment of Self-Reported Urinary Symptoms: A New Tool for Research on Subtypes of Patients with Lower Urinary Tract Symptoms.

Journal Article J Urol · June 2019 PURPOSE: To improve the potential for finding clinically important subtypes of patients with lower urinary tract symptoms we developed the CASUS (Comprehensive Assessment of Self-reported Urinary Symptoms). We used it to present data on the experiences of ... Full text Link to item Cite

Parental Perceptions of Displayed Patient Data in a PICU: An Example of Unintentional Empowerment.

Journal Article Pediatr Crit Care Med · May 2019 OBJECTIVES: To explore the perceptions of parents of pediatric patients in a PICU regarding real-time open electronic health record data displayed in patient rooms. DESIGN: Cross-sectional qualitative interview study. SETTING: PICU in a large Midwestern te ... Full text Link to item Cite

Sexual dysfunction and reproductive concerns in young women with breast cancer: Type, prevalence, and predictors of problems.

Journal Article Psychooncology · December 2018 OBJECTIVE: A dearth of studies focusing on young women (<40 years) with breast cancer have hampered the understanding of the type, prevalence, and predictors of sexual dysfunction and reproductive concerns in this population. METHODS: Data were collected f ... Full text Link to item Cite

Psychometric Evaluation of PROMIS Sexual Function and Satisfaction Measures in a Longitudinal Population-Based Cohort of Men With Localized Prostate Cancer.

Conference J Sex Med · December 2018 BACKGROUND: There are multiple treatment options for men with localized prostate cancer that provide similar curative efficacy but differ in their impact on sexual functioning. AIM: To evaluate the psychometric properties of the Patient-Reported Outcomes M ... Full text Link to item Cite

Cultural and Social Challenges of Diabetes Self-Management Education Through Physicians' Voices.

Journal Article WMJ · December 2018 OBJECTIVE: The aim of this study is to understand how the physician-patient relationship is related to referral practices for diabetes self-management education and physicians' perceptions of culturally competent health care delivery at a large health syst ... Link to item Cite

Patients' Perspectives on the Definition of Cure in Chronic Myeloid Leukemia: A US Based Survey

Conference Blood · November 29, 2018 AbstractIntroduction:The development of tyrosine kinase inhibitors (TKIs) has markedly improved the prognosis of patients (pts) with chronic myeloid leukemia (CML), with the ... Full text Cite

Adjuvant Doxycycline to Enhance Anti-Amyloid Effects: Results from the DUAL (Doxycycline to Upgrade response in AL amyloidosis) Study

Conference Blood · November 29, 2018 AbstractBackground: Light chain (AL) amyloidosis is associated with misfolded, insoluble fibril deposits in vital organs such as the heart, kidneys, liver, and nerves, derived from immunoglobulin light chain ... Full text Cite

Content validity of the PROMIS® pediatric family relationships measure for children with chronic illness.

Journal Article Health Qual Life Outcomes · October 19, 2018 BACKGROUND: Families play a critical role in supporting the health and well-being of children with chronic illnesses, who face a lifetime of responsibility for self-management of their condition. Our goal was to investigate whether the novel Patient-Report ... Full text Link to item Cite

Correction to: Inflammatory Bowel Diseases Can Adversely Impact Domains of Sexual Function Such as Satisfaction with Sex Life.

Journal Article Dig Dis Sci · October 2018 The original version of the article unfortunately contained an error in Results section of Abstract. ... Full text Link to item Cite

Providers' assessment of a novel interactive health information technology in a pediatric intensive care unit.

Journal Article JAMIA Open · July 2018 OBJECTIVE: To explore perceptions of critical care providers about a novel collaborative inpatient health information technology (HIT) in a pediatric intensive care unit (PICU) setting. METHODS: This cross-sectional, concurrent mixed methods study was cond ... Full text Link to item Cite

Inflammatory Bowel Diseases Can Adversely Impact Domains of Sexual Function Such as Satisfaction with Sex Life.

Journal Article Dig Dis Sci · June 2018 BACKGROUND: Aspects of sexual health, which can be adversely affected by chronic disease, have been inadequately explored in inflammatory bowel disease (IBD). AIMS: We evaluated patient-reported interest in sexual activity and satisfaction with sex life in ... Full text Link to item Cite

Patient-reported distress is prevalent in systemic light chain (AL) amyloidosis but not determined by severity of disease.

Journal Article Amyloid · June 2018 We conducted this retrospective study to assess patient-reported distress in light chain (AL) amyloidosis, using the Distress Thermometer (DT) survey at first evaluation at our center. Of 78 patients who completed the survey, 75 scored their distress (dist ... Full text Link to item Cite

Impact of pediatric cancer on family relationships.

Journal Article Cancer Med · May 2018 Little is known about the impact of cancer on family relationships from the perspective of the pediatric cancer patient and their sibling(s). This study assessed and compared children's experiences of family relationships in patients receiving active cance ... Full text Link to item Cite

Design and rationale for the life after stopping tyrosine kinase inhibitors (LAST) study, a prospective, single-group longitudinal study in patients with chronic myeloid leukemia.

Journal Article BMC Cancer · April 2, 2018 BACKGROUND: Treatment of chronic myeloid leukemia with a tyrosine kinase inhibitor (TKI) offers significant improvements over previous treatments in terms of survival and toxicity yet nevertheless is associated with reduced health-related quality of life a ... Full text Link to item Cite

Why Parents Seek Care for Acute Illness in the Clinic or the ED: The Role of Health Literacy.

Journal Article Acad Pediatr · April 2018 OBJECTIVE: To explore the decision to seek care and decision-making regarding location of care among parents with low and adequate health literacy. METHODS: Parents of children 8 years old or younger who presented for 'sick child' visits at a clinic or a n ... Full text Link to item Cite

Reasons for Seeking Clinical Care for Lower Urinary Tract Symptoms: A Mixed Methods Study.

Journal Article J Urol · February 2018 PURPOSE: The primary objective of this study was to evaluate reasons for seeking care among men and women with lower urinary tract symptoms. MATERIALS AND METHODS: Participants were recruited from urology and urogynecology clinics, and the community. The s ... Full text Link to item Cite

Centralized patient-reported outcome data collection in transplantation is feasible and clinically meaningful.

Journal Article Cancer · December 1, 2017 BACKGROUND: Allogeneic hematopoietic cell transplantation (HCT) cures many patients, but often with the risk of late effects and impaired quality of life. The value of quantifying patient-reported outcomes (PROs) is increasingly being recognized, but the r ... Full text Link to item Cite

Female Sexual Dysfunction-Medical and Psychological Treatments, Committee 14.

Journal Article J Sex Med · December 2017 INTRODUCTION: Since the millennium we have witnessed significant strides in the science and treatment of female sexual dysfunction (FSD). This forward progress has included (i) the development of new theoretical models to describe healthy and dysfunctional ... Full text Link to item Cite

Rationale and design of DUAL study: Doxycycline to Upgrade response in light chain (AL) amyloidosis (DUAL): A phase 2 pilot study of a two-pronged approach of prolonged doxycycline with plasma cell-directed therapy in the treatment of AL amyloidosis.

Journal Article Contemp Clin Trials Commun · December 2017 Light chain (AL) amyloidosis is a plasma cell neoplasm associated with insoluble fibril deposition from clonal immunoglobulin chains systemically. The disease is associated with high early mortality and morbidity owing to advanced organ deposition as well ... Full text Link to item Cite

Patients' Conceptions of Terms Related to Sexual Interest, Desire, and Arousal.

Journal Article J Sex Med · November 2017 BACKGROUND: Measurement of sexual function typically uses self-report, which, to work as intended, must use language that is understood consistently by diverse respondents. Commonly used measures employ multiple terms, primarily (sexual) interest, desire, ... Full text Link to item Cite

Chronic Myeloid Leukemia-the Promise of Tyrosine Kinase Inhibitor Discontinuation.

Journal Article Curr Hematol Malig Rep · October 2017 Some believe that tyrosine kinase inhibitor (TKI) therapy is as close to perfect as it gets in oncologic therapy. Patients diagnosed with chronic myeloid leukemia (CML) are treated with a daily oral therapy, through which most achieve remission. TKI therap ... Full text Link to item Cite

A conceptual framework for patient-centered fertility treatment.

Journal Article Reprod Health · September 7, 2017 BACKGROUND: Patient-centered care is a pillar of quality health care and is important to patients experiencing infertility. In this study we used empirical, in-depth data on couples' experiences of infertility treatment decision making to inform and revise ... Full text Open Access Link to item Cite

Vitamin D levels in critically ill patients with acute kidney injury: a protocol for a prospective cohort study (VID-AKI).

Journal Article BMJ open · July 2017 IntroductionAcute kidney injury (AKI) affects more than 50% of critically ill patients. The formation of calcitriol, the active vitamin D metabolite, from the main inactive circulating form, 25-hydroxyvitamin D (25(OH)D), occurs primarily in the p ... Full text Cite

Priorities for family building among patients and partners seeking treatment for infertility.

Journal Article Reprod Health · April 5, 2017 BACKGROUND: Infertility treatment decisions require people to balance multiple priorities. Within couples, partners must also negotiate priorities with one another. In this study, we assessed the family-building priorities of couples prior to their first c ... Full text Open Access Link to item Cite

Assessment of vulvar discomfort with sexual activity among women in the United States.

Journal Article Am J Obstet Gynecol · April 2017 BACKGROUND: Multidimensional self-report measures of sexual function for women do not include the assessment of vulvar discomfort, limiting our understanding of its prevalence. In an effort to improve the measurement of patient-reported health, the Nationa ... Full text Link to item Cite

Sexual function and satisfaction among heterosexual and sexual minority U.S. adults: A cross-sectional survey.

Journal Article PLoS One · 2017 BACKGROUND: Despite known health disparities for sexual minorities, few studies have described sexual function by sexual orientation using a robust approach to measurement of sexual function. We compared recent sexual function and satisfaction by sexual or ... Full text Open Access Link to item Cite

Nurses' perceptions of a novel health information technology: A qualitative study in the pediatric intensive care unit.

Journal Article Int J Hum Comput Interact · 2017 The purpose of this study was to evaluate the use of a novel health information technology (HIT), a large customizable interactive monitor (LCIM), implemented in a pediatric intensive care unit (PICU). Specifically, we explored nurses' perceptions of this ... Full text Link to item Cite

Nurses' perceptions, acceptance, and use of a novel in-room pediatric ICU technology: testing an expanded technology acceptance model.

Journal Article BMC Med Inform Decis Mak · November 15, 2016 BACKGROUND: The value of health information technology (IT) ultimately depends on end users accepting and appropriately using it for patient care. This study examined pediatric intensive care unit nurses' perceptions, acceptance, and use of a novel health ... Full text Link to item Cite

Nurses' perceptions, acceptance, and use of a novel in-room pediatric ICU technology: testing an expanded technology acceptance model

Journal Article BMC Medical Informatics and Decision Making · November 15, 2016 Background: The value of health information technology (IT) ultimately depends on end users accepting and appropriately using it for patient care. This study examined pediatric intensive care unit nurses' perceptions, acceptance, and use of a novel health ... Full text 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

Can we agree on patient-reported outcome measures for assessing hematopoietic cell transplantation patients? A study from the CIBMTR and BMT CTN.

Journal Article Bone Marrow Transplant · September 2016 Much research into the impact of hematopoietic cell transplantation (HCT) on recipients' symptoms, functioning and health-related quality of life uses diverse patient-reported outcome (PRO) measures. Robust conclusions regarding PROs in HCT patients are co ... Full text Link to item Cite

Decision making by patients seeking care for fertility problems

Conference Fertility and Sterility · September 2016 Full text Cite

Infertility & family-building priorities

Conference Fertility and Sterility · September 2016 Full text Cite

Provider Use of a Novel EHR display in the Pediatric Intensive Care Unit. Large Customizable Interactive Monitor (LCIM).

Journal Article Appl Clin Inform · July 20, 2016 OBJECTIVES: The purpose of this study was to explore providers' perspectives on the use of a novel technology, "Large Customizable Interactive Monitor" (LCIM), a novel application of the electronic health record system implemented in a Pediatric Intensive ... Full text Link to item Cite

Symptoms of Lower Urinary Tract Dysfunction Research Network.

Journal Article J Urol · July 2016 PURPOSE: To address gaps in understanding and treating lower urinary tract symptoms, the NIDDK created the Symptoms of Lower Urinary Tract Dysfunction Research Network (LURN). The goals of LURN are to work collaboratively to 1) identify and explain the imp ... Full text Link to item Cite

Quality of Life and Long-Term Therapy in Patients with Chronic Myeloid Leukemia.

Journal Article Curr Hematol Malig Rep · April 2016 Since the development of imatinib and other tyrosine kinase inhibitors (TKIs), the prognosis for patients with chronic myeloid leukemia (CML) has markedly improved, such that most patients diagnosed with CML can now expect to live with their disease rather ... Full text Link to item Cite

Reliability and construct validity of PROMIS® measures for patients with heart failure who undergo heart transplant.

Journal Article Qual Life Res · November 2015 PURPOSE: To evaluate the reliability and construct validity of measures from the Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®)) for patients with heart failure before and after heart transplantation. METHODS: We assessed reliabilit ... Full text Link to item Cite

Development and Validation of a Single-Item Screener for Self-Reporting Sexual Problems in U.S. Adults.

Journal Article J Gen Intern Med · October 2015 BACKGROUND: Brief self-assessment of sexual problems in a clinical context has the potential to improve care for patients through the ability to track trends in sexual problems over time and facilitate patient-provider communication about this important to ... 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

Self-Reported Sexual Function Measures Administered to Female Cancer Patients: A Systematic Review, 2008-2014.

Journal Article J Psychosoc Oncol · 2015 A systematic review was conducted to identify and characterize self-reported sexual function (SF) measures administered to women with a history of cancer. Using 2009 PRISMA guidelines, we searched electronic bibliographic databases for quantitative studies ... Full text Link to item Cite

DEVELOPMENT AND PRELIMINARY VALIDATION OF THE PROMIS SEXFS VERSION 2.0

Conference JOURNAL OF SEXUAL MEDICINE · January 1, 2015 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

Accuracy of 30-day recall for components of sexual function and the moderating effects of gender and mood.

Journal Article J Sex Med · March 2014 INTRODUCTION: Despite the ubiquity of 1-month recall periods for measures of sexual function, there is limited evidence for how well recalled responses correspond to individuals' actual daily experiences. AIM: To characterize the correspondence between dai ... Full text Link to item Cite

Patient-provider communication about gestational weight gain among nulliparous women: a qualitative study of the views of obstetricians and first-time pregnant women.

Journal Article BMC Pregnancy Childbirth · December 11, 2013 BACKGROUND: In 2009 the Institute of Medicine updated its guidelines for weight gain during pregnancy, in part because women of childbearing age now weigh more pre-pregnancy and tend to gain more weight during pregnancy than women did when the previous set ... Full text Link to item Cite

Reasons for sexual inactivity in a US national survey of adults

Journal Article QUALITY OF LIFE RESEARCH · October 1, 2013 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

Hemoglobin, exercise training, and health status in patients with chronic heart failure (from the HF-ACTION randomized controlled trial).

Journal Article Am J Cardiol · October 1, 2013 Anemia is common in patients with chronic heart failure (HF), with a prevalence ranging from 10% to 56%, and may be a risk factor for poor outcomes. Anemia in HF remains poorly understood, with significant gaps in its impact on health-related quality of li ... Full text Link to item Cite

Use of central institutional review boards for multicenter clinical trials in the United States: a review of the literature.

Journal Article Clin Trials · August 2013 BACKGROUND: To improve the efficiency of conducting multicenter clinical trials, the Food and Drug Administration, the Office of Human Research Protections, and the Department of Health and Human Services have expressed support for using a centralized inst ... Full text Link to item Cite

Participants' perspectives on safety monitoring in clinical trials.

Journal Article Clin Trials · August 2013 BACKGROUND: Minimizing the risk to study participants is an essential requirement of ethical research. Respecting the rights of subjects is also paramount, which includes respecting their autonomy by making available important information about the evolvin ... 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

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

Using central IRBs for multicenter clinical trials in the United States.

Journal Article PLoS One · 2013 Research institutions differ in their willingness to defer to a single, central institutional review board (IRB) for multicenter clinical trials, despite statements from the FDA, OHRP, and NIH in support of using central IRBs to improve the efficiency of c ... Full text Link to item Cite

National survey of hospital strategies to reduce heart failure readmissions: findings from the Get With the Guidelines-Heart Failure registry.

Journal Article Circ Heart Fail · November 2012 BACKGROUND: Reducing 30-day heart failure readmission rates is a national priority. Yet, little is known about how hospitals address the problem and whether hospital-based processes of care are associated with reductions in readmission rates. METHODS AND R ... Full text Link to item Cite

Significant Variation in Provider Discussion of Sexual Side Effects With Radiation Therapy Patients

Conference International Journal of Radiation Oncology*Biology*Physics · November 2012 Full text Cite

REASONS FOR SEXUAL INACTIVITY: RESULTS FROM A NATIONAL SURVEY

Conference JOURNAL OF SEXUAL MEDICINE · August 1, 2012 Link to item Cite

DEVELOPMENT AND VALIDATION OF THE PROMIS SEXUAL FUNCTION MEASURE

Conference JOURNAL OF SEXUAL MEDICINE · August 1, 2012 Link to item Cite

PATIENTS' UNDERSTANDING OF INTEREST, DESIRE, AND AROUSAL

Conference JOURNAL OF SEXUAL MEDICINE · August 1, 2012 Link to item Cite

Patient experiences with communication about sex during and after treatment for cancer.

Journal Article Psychooncology · June 2012 Featured Publication OBJECTIVE: We studied patients' experiences with oncology providers regarding communication about sexual issues during and after treatment for cancer. METHODS: During development of the Patient-Reported Outcomes Measurement Information System (PROMIS(®)) S ... Full text Link to item Cite

Validity of 1-month Recall for Components of Sexual Function (MT)

Conference QUALITY OF LIFE RESEARCH · January 1, 2012 Link to item Cite

Validating the PROMIS (R) Sexual Function Brief Profile Measures

Conference QUALITY OF LIFE RESEARCH · January 1, 2012 Link to item Cite

Relationships between changes in patient-reported health status and functional capacity in outpatients with heart failure.

Journal Article Am Heart J · January 2012 Featured Publication BACKGROUND: Heart failure trials use a variety of measures of functional capacity and quality of life. Lack of formal assessments of the relationships between changes in multiple aspects of patient-reported health status and measures of functional capacity ... Full text Link to item Cite

THE PROMIS (c) SEXUAL FUNCTION MEASURE: DEVELOPMENT AND EARLY VALIDATION

Conference ANNALS OF BEHAVIORAL MEDICINE · April 1, 2011 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 Featured Publication 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

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 Featured Publication 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

Outcomes, health policy, and managed care: relationships between patient-reported outcome measures and clinical measures in outpatients with heart failure.

Journal Article Am Heart J · October 2009 Featured Publication BACKGROUND: Patient-reported outcomes are increasingly used to assess the efficacy of new treatments. Understanding relationships between these and clinical measures can facilitate their interpretation. We examined associations between patient-reported mea ... Full text 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 Featured Publication 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

Effects of exercise training on health status in patients with chronic heart failure: HF-ACTION randomized controlled trial.

Journal Article JAMA · April 8, 2009 Featured Publication CONTEXT: Findings from previous studies of the effects of exercise training on patient-reported health status have been inconsistent. OBJECTIVE: To test the effects of exercise training on health status among patients with heart failure. DESIGN, SETTING, A ... Full text 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 Featured Publication 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

Patients' perceptions of safety if interpersonal continuity of care were to be disrupted.

Journal Article Health Expect · December 2008 Featured Publication OBJECTIVE: To determine if patients vary in perceptions of safety if interpersonal continuity were to be disrupted. If so, which characteristics are associated with feeling unsafe? BACKGROUND: The extent to which patients' preference for continuity with a ... Full text Link to item Cite

Decisional conflict among patients who accept or decline participation in phase I oncology studies.

Journal Article J Empir Res Hum Res Ethics · September 2008 Featured Publication WE COMPARED DECISIONAL CONFLICT among adults with advanced cancer who had accepted or declined participation in phase I cancer clinical trials. Respondents completed a 121-item questionnaire that included the Decisional Conflict Scale (DCS), which was desi ... Full text Link to item Cite

ERRATUM

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

Using item banks to construct measures of patient reported outcomes in clinical trials: investigator perceptions.

Journal Article Clin Trials · 2008 Featured Publication BACKGROUND: Item response theory (IRT) promises more sensitive and efficient measurement of patient-reported outcomes (PROs) than traditional approaches; however, the selection and use of PRO measures from IRT-based item banks differ from current methods o ... Full text 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 Featured Publication 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

Personality and health care decision-making style.

Journal Article J Gerontol B Psychol Sci Soc Sci · September 2007 Featured Publication Using the Wisconsin Longitudinal Study Graduate Survey (N = 5,830), a population-based cohort of older adults (most aged 63-66 years), we explored relationships between five factors of personality and four preference types that account for multiple compone ... 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

Incorporating item banks into clinical trials: Investigator perceptions

Conference JOURNAL OF GENERAL INTERNAL MEDICINE · April 1, 2007 Link to item Cite

When do older adults turn to the internet for health information? Findings from the Wisconsin Longitudinal Study.

Journal Article J Gen Intern Med · December 2006 Featured Publication BACKGROUND: Understanding how and when patients use nonphysician sources of health information is important to facilitate shared decision making within provider outpatient visits. However, little is known about which older adults seek health information on ... Full text Link to item Cite

A typology of preferences for participation in healthcare decision making.

Journal Article Soc Sci Med · September 2006 Featured Publication Classifying patients as "active" or "passive" with regard to healthcare decision making is misleading, since patients have different desires for different components of the decision-making process. Distinguishing patients' desired roles is an essential ste ... Full text Link to item Cite

From physician to consumer: the effectiveness of strategies to manage health care utilization.

Journal Article Med Care Res Rev · December 2002 Featured Publication Many strategies are commonly used to influence physician behavior in managed care organizations. This review examines the effectiveness of three mechanisms to influence physician behavior: financial incentives directed at providers or patients, policies/pr ... Full text Link to item Cite