Pain Burden in Children and Adolescents With Cerebral Palsy
Key facts
- Who runs it
- Sykehuset Telemark
- Where
- Saint Paul, United StatesSee the siteAlso in 4 other countries, 4 sites
- Trial code
- Status
- Completed
- People taking part
- 588 people enrolled
- Started
- 12 Mar 2020
- Ended
- 31 Aug 2024
- Type of study
- Observational, 3 groups
- Treatments tested
- Co-created intervention
- Record updated
- 16 October 2024
Who can take part
- Age
- 0 years to 67 years
- Sex
- Women and men
- Healthy volunteers
- Cannot take part
The registry criteria, word for word
Show all 6 criteriaShow less
Who can take part
- Children 0-18 years with a CP diagnosis registered in the Cerebral Palsy Registry of Norway (CPRN), or recruited through child habilitation centers, patient organizations or social media advertizing campains (USA, Canada, Finland \& Sweden)
- Siblings 12-18 years of a child/adolescent with CP (survey only)
- Clinicians identified by parents and/or children with CP as providers of pain-related care
Who cannot take part
- Unable or unwilling to provide self-report
- Not able to communicate in English or Norwegian
- Lives with the child less than 50% of the time (parental interviews)
Where in United States
Also in 4 other countries, 4 sites
- Gillette Children's Speciality HealthcareSaint Paul, United StatesNo longer taking part
About the trial
What the trial wants to find out
Pain in children and adolescents with cerebral palsy (CP) is a significant health challenge that so far has received too little attention. We lack knowledge on how pain is experienced, its consequences and of perceived support in managing pain. The overarching aim of the CPPain-program is to reduce pain experience, pain interference (e.g. pain burden) in children and adolescents living with CP. CPPain has a prospective cohort comparative design and will include before- and after measurements and process evaluation of a nested intervention.
Read full original descriptionShow less
This protocol concerns qualitative and quantitative data collection for the baseline of the CPPain program. The aim of the baseline data collection is to contribute in-depth knowledge of the pain burden in children and adolescents with CP. This knowledge is required to develop targeted pain-diminishing interventions in this vulnerable group of children with a high burden of challenges related to their chronic disease. In the next step, nested intervention will be co-created with children and adolescents with CP, their parents as well as health care professionals, and other professional caregivers involved in or responsible for management of pain based on existing research and baseline findings.
The 3 groups in the trial
- Children with a CP diagnosis
Children younger than 18 years with a CP diagnosis. Intervention will be determined later based on baseline results. Self- and/or proxy-reported survey and/or participation in interviews. Parents of all participants will provide proxy report. Children with CP \> 8 years of age and cognitively able (approx. 50%) will provide self-report.
Treatment: Co-created intervention
- Controls
Siblings (12-17 years) of children with cerebral palsy. No intervention, self-reported survey.
- Health Care Professionals
Health Care Professionals identified as providers of pain care. No intervention, interview participants
Data and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- Pain and Pain Burden in Children and Adolescents With Cerebral Palsy - the CPPain Program
- Record updated
- 16 October 2024