Cristina A Sarmiento, Edward Hurvitz, Jocelyn Cohen, Mary Gannotti
{"title":"Stakeholder perspectives on an adult cerebral palsy community registry: A qualitative study.","authors":"Cristina A Sarmiento, Edward Hurvitz, Jocelyn Cohen, Mary Gannotti","doi":"10.1016/j.dhjo.2025.101822","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>The Cerebral Palsy Research Network (CPRN) community registry has yielded valuable information about changes in function and pain in adults with cerebral palsy (CP) through a patient-reported outcomes registry. However, it requires increased enrollment and diversity of participants to produce more generalizable conclusions.</p><p><strong>Objective: </strong>To identify stakeholder perspectives about the barriers and facilitators to enrollment in the CPRN Community Registry, strategies to enhance recruitment efforts, and important questions for the registry.</p><p><strong>Methods: </strong>Qualitative descriptive study using iterative focus groups, followed by inductive thematic analysis. Participants included adults with CP and caregivers, clinical investigators, and community leaders in the CP and disability spaces. Focus groups explored perspectives about motivations for registry participation, barriers and facilitators to participation, and strategies for increasing and enhancing diversity of enrollment.</p><p><strong>Results: </strong>Four focus groups were conducted (20 participants with lived experience; 10 clinical investigators; 9 community leaders). All participants valued the information provided by the registry and felt that ongoing data collection was important. Barriers and related facilitators to participation include benefits of participation, awareness, accessibility, and collaboration with community and clinical partners. Adults with lived experience seek more precisely defined health and function outcomes for adults with CP.</p><p><strong>Conclusions: </strong>Adults with lived experience, clinical investigators, and community leaders identified barriers and facilitators to participation in a patient-reported registry and important questions. This study revealed that communicating a direct benefit to the participant, improved visibility and accessibility, leveraging collaboration with clinical and community partners, and answering more precise research questions could promote enrollment.</p>","PeriodicalId":49300,"journal":{"name":"Disability and Health Journal","volume":" ","pages":"101822"},"PeriodicalIF":3.7000,"publicationDate":"2025-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Disability and Health Journal","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1016/j.dhjo.2025.101822","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
引用次数: 0
Abstract
Background: The Cerebral Palsy Research Network (CPRN) community registry has yielded valuable information about changes in function and pain in adults with cerebral palsy (CP) through a patient-reported outcomes registry. However, it requires increased enrollment and diversity of participants to produce more generalizable conclusions.
Objective: To identify stakeholder perspectives about the barriers and facilitators to enrollment in the CPRN Community Registry, strategies to enhance recruitment efforts, and important questions for the registry.
Methods: Qualitative descriptive study using iterative focus groups, followed by inductive thematic analysis. Participants included adults with CP and caregivers, clinical investigators, and community leaders in the CP and disability spaces. Focus groups explored perspectives about motivations for registry participation, barriers and facilitators to participation, and strategies for increasing and enhancing diversity of enrollment.
Results: Four focus groups were conducted (20 participants with lived experience; 10 clinical investigators; 9 community leaders). All participants valued the information provided by the registry and felt that ongoing data collection was important. Barriers and related facilitators to participation include benefits of participation, awareness, accessibility, and collaboration with community and clinical partners. Adults with lived experience seek more precisely defined health and function outcomes for adults with CP.
Conclusions: Adults with lived experience, clinical investigators, and community leaders identified barriers and facilitators to participation in a patient-reported registry and important questions. This study revealed that communicating a direct benefit to the participant, improved visibility and accessibility, leveraging collaboration with clinical and community partners, and answering more precise research questions could promote enrollment.
期刊介绍：
Disability and Health Journal is a scientific, scholarly, and multidisciplinary journal for reporting original contributions that advance knowledge in disability and health. Topics may be related to global health, quality of life, and specific health conditions as they relate to disability. Such contributions include:
• Reports of empirical research on the characteristics of persons with disabilities, environment, health outcomes, and determinants of health
• Reports of empirical research on the Systematic or other evidence-based reviews and tightly conceived theoretical interpretations of research literature
• Reports of empirical research on the Evaluative research on new interventions, technologies, and programs
• Reports of empirical research on the Reports on issues or policies affecting the health and/or quality of life for persons with disabilities, using a scientific base.
求助内容：
应助结果提醒方式：
京公网安备 11010802042870号
