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Christina Kelsey Zigler

Associate Professor in Population Health Sciences
Population Health Sciences

Selected Publications


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

Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory.

Journal Article Contemp Clin Trials · February 2024 The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in ... 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

Potential bias and lack of generalizability in electronic health record data: reflections on health equity from the National Institutes of Health Pragmatic Trials Collaboratory.

Journal Article J Am Med Inform Assoc · August 18, 2023 Embedded pragmatic clinical trials (ePCTs) play a vital role in addressing current population health problems, and their use of electronic health record (EHR) systems promises efficiencies that will increase the speed and volume of relevant and generalizab ... Full text Link to item Cite

Patient experience of spontaneous intracranial hypotension (SIH): qualitative interviews for concept elicitation.

Journal Article J Patient Rep Outcomes · August 15, 2023 BACKGROUND & OBJECTIVES: Spontaneous intracranial hypotension (SIH) is an underdiagnosed and debilitating condition caused by a spinal cerebrospinal fluid (CSF) leak. Although SIH can lead to substantial morbidity and disability, little data exists about p ... Full text Link to item Cite

Cross-sectional quantitative validation of the paediatric Localized Scleroderma Quality of Life Instrument (LoSQI): A disease-specific patient-reported outcome measure.

Conference J Eur Acad Dermatol Venereol · July 2023 BACKGROUND: The Localized Scleroderma Quality of Life Instrument (LoSQI) is a disease-specific patient-reported outcome (PRO) measure designed for children and adolescents with localized scleroderma (LS; morphea). This tool was developed using rigorous PRO ... Full text Link to item Cite

Equity and bias in electronic health records data.

Journal Article Contemp Clin Trials · July 2023 Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions. However, many pragmatic trials rely on data from the el ... 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

Current Utilization of Qualitative Methodologies in Dermatology: A Scoping Review.

Journal Article JID Innov · March 2023 The focus of this review was to determine how qualitative methods are used in dermatology research and whether published manuscripts meet current standards for qualitative research. A scoping review of manuscripts published in English between January 1, 20 ... Full text Link to item Cite

A Tree-Based Approach to Identifying Response Styles with Anchoring Vignettes

Journal Article Measurement · January 1, 2023 Survey score interpretations are often plagued by sources of construct-irrelevant variation, such as response styles. In this study, we propose the use of an IRTree Model to account for response styles by making use of self-report items and anchoring vigne ... Full text 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

Responding to signals of mental and behavioral health risk in pragmatic clinical trials: Ethical obligations in a healthcare ecosystem.

Journal Article Contemp Clin Trials · February 2022 BACKGROUND: Ethical responsibilities for monitoring and responding to signals of behavioral and mental health risk (such as suicidal ideation, opioid use disorder, or depression) in general clinical research have been described; however, pragmatic clinical ... Full text Link to item Cite

Validation of a patient-reported outcome measure in adults with morphea

Conference JOURNAL OF INVESTIGATIVE DERMATOLOGY · 2022 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

Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory.

Journal Article Contemp Clin Trials · February 2024 The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in ... 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

Potential bias and lack of generalizability in electronic health record data: reflections on health equity from the National Institutes of Health Pragmatic Trials Collaboratory.

Journal Article J Am Med Inform Assoc · August 18, 2023 Embedded pragmatic clinical trials (ePCTs) play a vital role in addressing current population health problems, and their use of electronic health record (EHR) systems promises efficiencies that will increase the speed and volume of relevant and generalizab ... Full text Link to item Cite

Patient experience of spontaneous intracranial hypotension (SIH): qualitative interviews for concept elicitation.

Journal Article J Patient Rep Outcomes · August 15, 2023 BACKGROUND & OBJECTIVES: Spontaneous intracranial hypotension (SIH) is an underdiagnosed and debilitating condition caused by a spinal cerebrospinal fluid (CSF) leak. Although SIH can lead to substantial morbidity and disability, little data exists about p ... Full text Link to item Cite

Cross-sectional quantitative validation of the paediatric Localized Scleroderma Quality of Life Instrument (LoSQI): A disease-specific patient-reported outcome measure.

Conference J Eur Acad Dermatol Venereol · July 2023 BACKGROUND: The Localized Scleroderma Quality of Life Instrument (LoSQI) is a disease-specific patient-reported outcome (PRO) measure designed for children and adolescents with localized scleroderma (LS; morphea). This tool was developed using rigorous PRO ... Full text Link to item Cite

Equity and bias in electronic health records data.

Journal Article Contemp Clin Trials · July 2023 Embedded pragmatic clinical trials (ePCTs) are conducted during routine clinical care and have the potential to increase knowledge about the effectiveness of interventions under real world conditions. However, many pragmatic trials rely on data from the el ... 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

Current Utilization of Qualitative Methodologies in Dermatology: A Scoping Review.

Journal Article JID Innov · March 2023 The focus of this review was to determine how qualitative methods are used in dermatology research and whether published manuscripts meet current standards for qualitative research. A scoping review of manuscripts published in English between January 1, 20 ... Full text Link to item Cite

A Tree-Based Approach to Identifying Response Styles with Anchoring Vignettes

Journal Article Measurement · January 1, 2023 Survey score interpretations are often plagued by sources of construct-irrelevant variation, such as response styles. In this study, we propose the use of an IRTree Model to account for response styles by making use of self-report items and anchoring vigne ... Full text 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

Responding to signals of mental and behavioral health risk in pragmatic clinical trials: Ethical obligations in a healthcare ecosystem.

Journal Article Contemp Clin Trials · February 2022 BACKGROUND: Ethical responsibilities for monitoring and responding to signals of behavioral and mental health risk (such as suicidal ideation, opioid use disorder, or depression) in general clinical research have been described; however, pragmatic clinical ... Full text Link to item Cite

Validation of a patient-reported outcome measure in adults with morphea

Conference JOURNAL OF INVESTIGATIVE DERMATOLOGY · 2022 Cite

Enhancing the use of EHR systems for pragmatic embedded research: lessons from the NIH Health Care Systems Research Collaboratory.

Journal Article J Am Med Inform Assoc · November 25, 2021 OBJECTIVE: We identified challenges and solutions to using electronic health record (EHR) systems for the design and conduct of pragmatic research. MATERIALS AND METHODS: Since 2012, the Health Care Systems Research Collaboratory has served as the resource ... Full text Link to item Cite

Assessing the Field of Pediatric Rehabilitation Medicine's Interest in Expanding Fellowship Training to Pediatricians.

Journal Article PM R · October 2021 BACKGROUND: Training opportunities to pursue a career in pediatric rehabilitation medicine (PRM) have evolved over the last 40 years, with the most recent change being the development and accreditation of PRM fellowships and subspecialty certification in P ... Full text Link to item Cite

Use of healthcare resources in patients with low back pain and comorbid depression or anxiety.

Journal Article Spine J · September 2021 BACKGROUND CONTEXT: Psychological comorbidities are important prognostic factors for low back pain (LBP). To develop improved treatment paradigms, it is first necessary to characterize and determine current patterns of treatment in this population. PURPOSE ... Full text Link to item Cite

Exploratory investigation of the outcomes of wheelchair provision through two service models in Indonesia.

Journal Article PLoS One · 2021 The World Health Organization (WHO) estimates that only 17-37% of the approximately 77 million people who need a wheelchair have access to one. Many organizations are trying to address this need through varying service delivery approaches. For instance, so ... Full text Link to item Cite

Malaria Diagnosis by U.S. Providers on Short-term Medical Mission Trips to Uganda.

Journal Article J Health Care Poor Underserved · 2021 Malaria is one of the top 10 leading causes of death in Uganda. Short-term medical missions (STMMs) to address unmet medical needs in lower-resource settings are increasingly common. Th is study evaluates correlations between patient and clinician variable ... Full text Link to item Cite

The importance of development standards for anchoring vignettes: an illustrative example from pediatric localized scleroderma quality of life.

Journal Article Qual Life Res · December 2020 PURPOSE: Anchoring vignettes (AVs) are a promising measurement technique to reduce bias in patient-reported outcome (PRO) measures by helping researchers understand differences in how individuals and groups interpret response options. However, little atten ... Full text Link to item Cite

Exploring the impact of paediatric localized scleroderma on health-related quality of life: focus groups with youth and caregivers.

Journal Article Br J Dermatol · October 2020 BACKGROUND: Paediatric localized scleroderma (LS) can negatively impact health-related quality of life (HRQoL) by causing skin fibrosis, abnormal limb development, disfigurement, and side-effects from immunosuppressive treatment. Studies to date have rarel ... Full text Link to item Cite

Association Between Public Knowledge About COVID-19, Trust in Information Sources, and Adherence to Social Distancing: Cross-Sectional Survey.

Journal Article JMIR Public Health Surveill · September 15, 2020 BACKGROUND: The success of behavioral interventions and policies designed to reduce the impact of the COVID-19 pandemic depends on how well individuals are informed about both the consequences of infection and the steps that should be taken to reduce the i ... Full text Link to item Cite

Association Between Public Knowledge About COVID-19, Trust in Information Sources, and Adherence to Social Distancing: Cross-Sectional Survey (Preprint)

Journal Article · July 2, 2020 BACKGROUNDThe success of behavioral interventions and policies designed to reduce the impact of the COVID-19 pandemic depends on how well individuals are informed about both the consequen ... Full text Cite

Descriptive Analysis of an Interdisciplinary Musculoskeletal Program.

Journal Article PM R · July 2020 BACKGROUND: Interdisciplinary musculoskeletal programs address comorbidities confounding musculoskeletal conditions and serve as an alternative to the single provider model. OBJECTIVE: Descriptive analysis of an interdisciplinary musculoskeletal program. D ... Full text Link to item Cite

Factors Associated With Ambulation in Myelomeningocele: A Longitudinal Study From the National Spina Bifida Patient Registry.

Journal Article Am J Phys Med Rehabil · July 2020 OBJECTIVE: Evidence is limited regarding clinical factors associated with ambulation status over the lifespan of individuals with myelomeningocele. We used longitudinal data from the National Spina Bifida Patient Registry to model population-level variatio ... Full text Link to item Cite

Gender-Based Salary Inequities Among Pediatric Rehabilitation Medicine Physicians in the United States.

Journal Article Arch Phys Med Rehabil · May 2020 OBJECTIVE: To assess whether gender inequities exist for pediatric physiatrists and, if affirmative, what factors account for this difference. DESIGN: Cohort study. SETTING: Online REDCap survey administered via e-mail. PARTICIPANTS: Pediatric physiatrists ... Full text Link to item Cite

A novel patient-reported outcome for paediatric localized scleroderma: a qualitative assessment of content validity.

Journal Article Br J Dermatol · March 2020 BACKGROUND: According to current standards, no existing patient-reported outcome (PRO) measures have high-quality validity evidence for use with individuals diagnosed with paediatric localized scleroderma (LS). This severely hinders patient-centred LS-focu ... Full text Open Access Link to item Cite

The State of the Field: Results from the 2014 and 2017 Pediatric Rehabilitation Medicine Practice Surveys.

Journal Article PM R · February 2020 BACKGROUND: Childhood disability is on the rise and there is a national shortage of pediatric physiatrists in the United States. The 2009 Pediatric Rehabilitation Medicine Practice Survey identified concerns regarding inadequate geographic dispersion of pr ... Full text Link to item Cite

Wheelchair user’s voice: a pilot study in Indonesia

Journal Article · 2020 There is a significant unmet need for appropriate wheelchairs worldwide. As a whole, studies suggest that appropriate wheelchairs have a positive impact on the quality of life and health of wheelchair users, which is consistent with the goals and outcomes ... Full text Cite

Epigenetic Effects on Pediatric Traumatic Brain Injury Recovery (EETR): An Observational, Prospective, Longitudinal Concurrent Cohort Study Protocol.

Journal Article Front Neurol · 2020 Introduction: Unexplained heterogeneity in outcomes following pediatric traumatic brain injury (TBI) is one of the most critical barriers to the development of effective prognostic tools and therapeutics. The addition of personal biological factors to our ... Full text Link to item Cite

Fear & anxiety in the time of COVID-19: How they influence behavior

Journal Article Behavioral Science and Policy · January 1, 2020 The emotional factors that influence adherence to public health guidelines for containing the spread of COVID-19 are poorly understood and are limiting policymakers’ ability to elicit compliance. In this article, we report the results of a nationwide surve ... Full text Cite

The future of the provision process for mobility assistive technology: a survey of providers.

Journal Article Disabil Rehabil Assist Technol · May 2019 PURPOSE: The purpose of this study was to evaluate the opinions of providers of mobility assistive technologies to help inform a research agenda and set priorities. MATERIALS AND METHODS: This survey study was anonymous and gathered opinions of individuals ... Full text Link to item Cite

Prediction of disease relapse in a cohort of paediatric patients with localized scleroderma.

Journal Article Br J Dermatol · May 2019 BACKGROUND: Localized scleroderma (LS) is an autoimmune condition of the skin and underlying tissue. Active or recurring disease can lead to cumulative tissue damage, especially in paediatric-onset disease. OBJECTIVES: To highlight the rate of relapse of L ... Full text Link to item Cite

A Comparison of Multilevel Mediation Modeling Methods: Recommendations for Applied Researchers.

Journal Article Multivariate Behav Res · 2019 Multilevel structural equation modeling (MSEM) has been proposed as a valuable tool for estimating mediation in multilevel data and has known advantages over traditional multilevel modeling, including conflated and unconflated techniques (CMM & UMM). Recen ... Full text Link to item Cite

Botulinum Toxin: Techniques Within Pediatric Physiatry.

Journal Article PM R · January 2019 BACKGROUND: Intramuscular botulinum toxin injections are used for treatment of focal spasticity in children, particularly in those with a diagnosis of cerebral palsy. There are a variety of techniques used when performing botulinum toxin injections without ... Full text Link to item Cite

Co-morbidities Associated With Early Mortality in Adults With Spina Bifida.

Journal Article Am J Phys Med Rehabil · December 2018 OBJECTIVE: The aims of this quality improvement project were to identify secondary conditions and medical co-morbidities in adult patients with spina bifida and to determine which factors were associated with an earlier age of death. DESIGN: Retrospective ... Full text Link to item Cite

The Voice of the Consumer: A Survey of Veterans and Other Users of Assistive Technology.

Journal Article Mil Med · November 1, 2018 INTRODUCTION: A total of 3.6 million Americans and over 250,000 veterans use wheelchairs. The need for advancements in mobility-assistive technologies is continually growing due to advances in medicine and rehabilitation that preserve and prolong the lives ... Full text Link to item Cite

Psychometric properties of the Children's Dermatology Life Quality Index in pediatric localized scleroderma.

Journal Article J Scleroderma Relat Disord · June 2018 INTRODUCTION: The Children's Dermatology Life Quality Index has been used to measure quality of life in studies of pediatric localized scleroderma, which suggested only modest effects on quality of life. However, the Children's Dermatology Life Quality Ind ... Full text Link to item Cite

Reliability and Validity of the Revised Transfer Assessment Instrument.

Journal Article Top Spinal Cord Inj Rehabil · 2018 Background: Proper transfer technique is associated with improved biomechanics and decreased pain and pathology. However, many users do not use proper technique, and appropriate assessment and training are needed to address these deficits. The transfer ass ... Full text Link to item Cite

Factors affecting procedural pain in children during and immediately after intramuscular botulinum toxin injections for spasticity.

Journal Article J Pediatr Rehabil Med · 2018 PURPOSE: To evaluate variables that modulate pain during intramuscular botulinum toxin A injections in children. METHODS: As part of a Quality Improvement project, this retrospective analysis compared reported pain during and five minutes post injections w ... Full text Link to item Cite

Predictors of Longitudinal Quality of Life in Juvenile Localized Scleroderma.

Journal Article Arthritis Care Res (Hoboken) · July 2017 OBJECTIVE: Localized scleroderma can negatively affect children's quality of life (QoL), but predictors of impact have not been well described. We sought to identify predictors of QoL impact in juvenile localized scleroderma patients. METHODS: We analyzed ... Full text Link to item Cite

Durometry as an outcome measure in juvenile localized scleroderma.

Journal Article The British journal of dermatology · January 2016 Full text Cite

Peripheral blood cytokine and chemokine profiles in juvenile localized scleroderma: T-helper cell-associated cytokine profiles.

Journal Article Semin Arthritis Rheum · December 2015 OBJECTIVE: To evaluate peripheral blood T-helper (TH) cell-associated cytokine and chemokine profiles in localized scleroderma (LS), and correlate them with clinical disease features, including disease activity parameters. METHODS: A 29-plex Luminex platfo ... Full text Link to item Cite

Predictors of Disease Relapse in Juvenile Localized Scleroderma

Conference ARTHRITIS & RHEUMATOLOGY · 2014 Cite

The Localized Scleroderma Cutaneous Assessment Tool: responsiveness to change in a pediatric clinical population.

Journal Article J Am Acad Dermatol · August 2013 BACKGROUND: Lack of agreement on how to accurately capture disease outcomes in localized scleroderma (LS) has hindered the development of efficacious treatment protocols. The LS Cutaneous Assessment Tool (LoSCAT), consisting of the modified LS Skin Severit ... Full text Link to item Cite

Interferon-gamma inducible protein-10 as a potential biomarker in localized scleroderma.

Journal Article Arthritis research & therapy · January 2013 IntroductionThe purpose of this study was to evaluate the presence and levels of interferon-gamma inducible protein-10 (IP-10) in the plasma and skin of pediatric localized scleroderma (LS) patients compared to those of healthy pediatric controls ... Full text Cite