Pain burden in children with cerebral palsy (CPPain) survey: Study protocol

Paediatric & Neonatal Pain

Ann I. Alriksson‐Schmidt¹  Frank J. Symons²  Ira Jeglinsky‐Kankainen³  Kjersti Ramstad⁴  Jordan Sheriko⁵  Lara Genik⁶  Randi Dovland Andersen⁷  Christine T. Chambers⁸  Chantel Burkitt⁹  Reidun B. Jahnsen^1,10  Olav Aga Kildal^1,10  Lars Wallin^1,11  Sindre K. Bruflot^1,12  Guro L. Andersen^1,13  Agneta Anderzen‐Carlsson^1,14 

[1] Department of Clinical Sciences Lund Skåne University Hospital Orthopedics Lund University Lund Sweden;Department of Educational Psychology University of Minnesota Minneapolis MN USA;Department of Health and Welfare Arcada University of Applied Sciences Helsinki Finland;Department of Paediatric Neurology Oslo University Hospital Oslo Norway;Department of Pediatrics Dalhousie University Halifax NS Canada;Department of Psychology University of Guelph Guelph ON Canada;Department of Research Telemark Hospital Skien Norway;Departments of Psychology & Neuroscience and Pediatrics Dalhousie University Halifax NS Canada;Gillette Children's Specialty Healthcare Saint Paul MN USA;Research Center for Habilitation and Rehabilitation Services and Models (CHARM) Institute of Health and Society University of Oslo Oslo Norway;School of Education, Health and Social Studies Dalarna University Falun Sweden;Telemark Chapter of the Norwegian Cerebral Palsy Association Skien Norway;The Cerebral Palsy Registry of Norway Vestfold Hospital Trust Tønsberg Norway;University Health Care Research Center and Swedish Institute for Disability Research Faculty of Medicine and Health Örebro University Örebro Sweden;

关键词: cerebral palsy;    disability;    pain;    survey;   

DOI  :  10.1002/pne2.12049

来源: DOAJ

【 摘 要 】

Abstract Pain is a significant health concern for children living with cerebral palsy (CP). There are no population‐level or large‐scale multi‐national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross‐sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6‐12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0‐17 years) and from children with CP (8‐17 years) who are able to self‐report. Siblings (12‐17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study‐specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health‐related quality of life, and the effect of the COVID‐19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer‐reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

【 授权许可】

Unknown