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

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Summary

This study addresses the significant health concern of pain in children with cerebral palsy (CP). The CPPain survey aims to understand pain burden and management to improve clinical care for children with CP.

Keywords:
cerebral palsydisabilitypainsurvey

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Area of Science:

  • Pediatric Health
  • Neurology
  • Pain Management

Background:

  • Pain is a major health issue for children with cerebral palsy (CP).
  • Existing data on pain experience, burden, and management in children with CP is limited, lacking population-level, multinational datasets.
  • There is a need for comprehensive data to inform and improve clinical practices for managing pain in this population.

Purpose of the Study:

  • To comprehensively understand the pain burden experienced by children with CP.
  • To investigate current pain management strategies employed for children with CP.
  • To generate data aimed at transforming clinical practice related to CP pain.

Main Methods:

  • A cross-sectional study involving approximately 1400 children with CP (aged 0-17 years) across multiple countries.
  • Data collection from parents/guardians and self-reports from children (aged 8-17 years), with siblings (aged 12-17 years) as controls.
  • Utilized validated and study-specific questionnaires covering demographics, pain, management, quality of life, and pandemic impact; primarily online distribution.

Main Results:

  • The study is currently in the data collection phase.
  • Ethical approvals are secured in Norway and the USA, with pending approvals in Canada, Sweden, and Finland.
  • Anticipated analyses include statistical comparisons between groups and subgroup investigations.

Conclusions:

  • The CPPain survey is generating crucial data on pain in children with CP.
  • Findings will be disseminated through various channels including peer-reviewed publications, conferences, and a dedicated website.
  • The ultimate goal is to enhance clinical care and improve outcomes for children with CP experiencing pain.