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

Andersen, Randi Dovland ; Genik, Lara ; Alriksson-Schmidt, Ann I LU ; Anderzen-Carlsson, Agneta ; Burkitt, Chantel ; Bruflot, Sindre K ; Chambers, Christine T ; Jahnsen, Reidun B ; Jeglinsky-Kankainen, Ira and Kildal, Olav Aga , et al. (2022) In Paediatric & Neonatal Pain 4(1). p.12-22
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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Paediatric & Neonatal Pain
volume
4
issue
1
pages
12 - 22
publisher
Wiley
external identifiers
  • pmid:35546915
ISSN
2637-3807
DOI
10.1002/pne2.12049
language
English
LU publication?
yes
additional info
© 2021 The Authors. Paediatric and Neonatal Pain published by John Wiley & Sons Ltd.
id
a97a8352-da60-46f6-83f3-924016684782
date added to LUP
2022-06-27 14:35:33
date last changed
2022-06-27 15:17:03
@article{a97a8352-da60-46f6-83f3-924016684782,
  abstract     = {{<p>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.</p>}},
  author       = {{Andersen, Randi Dovland and Genik, Lara and Alriksson-Schmidt, Ann I and Anderzen-Carlsson, Agneta and Burkitt, Chantel and Bruflot, Sindre K and Chambers, Christine T and Jahnsen, Reidun B and Jeglinsky-Kankainen, Ira and Kildal, Olav Aga and Ramstad, Kjersti and Sheriko, Jordan and Symons, Frank J and Wallin, Lars and Andersen, Guro L}},
  issn         = {{2637-3807}},
  language     = {{eng}},
  number       = {{1}},
  pages        = {{12--22}},
  publisher    = {{Wiley}},
  series       = {{Paediatric & Neonatal Pain}},
  title        = {{Pain burden in children with cerebral palsy (CPPain) survey : Study protocol}},
  url          = {{http://dx.doi.org/10.1002/pne2.12049}},
  doi          = {{10.1002/pne2.12049}},
  volume       = {{4}},
  year         = {{2022}},
}