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Identifying pain trajectories in children and youth with cerebral palsy: a pilot study
Heather M Shearer1,2,3, Pierre Côté4,5,6,7, Sheilah Hogg-Johnson4,5,6,7,8
1Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada. hshearer@hollandbloorview.ca.
Insights
This pilot study shows it is feasible to track pain fluctuations in children with cerebral palsy (CP) and their impact on well-being. Future research should focus on improving recruitment for all CP severity levels.
Area of Science:
- Pediatric Rehabilitation
- Pain Management
- Child Neurology
Background:
- Chronic pain is prevalent in children with cerebral palsy (CP), yet short-term pain variations and their effects on well-being are poorly understood.
- High-quality cohort studies are essential to elucidate the clinical progression of pain in this population.
- This pilot study assessed the feasibility of a multicenter cohort study to address these knowledge gaps.
Purpose of the Study:
- To determine the feasibility of conducting a multicenter cohort study on pain in children with CP.
- To evaluate study processes, resource management, and recruitment/follow-up rates.
- To gather preliminary data on pain intensity, interference, and well-being in pediatric CP patients.
Main Methods:
- A pilot cohort study involving 10 Canadian children/youth with CP across two rehabilitation centers.
- Data collection included weekly self-reported pain intensity (Faces Pain Scale-Revised, Numeric Rating Scale), pain interference, location, well-being (KIDSCREEN-27), sleep, and interventions.
- Feasibility indicators such as recruitment rates, follow-up completion, data completeness, and participant characteristics were evaluated.
Main Results:
- Ten participants (aged 8-17 years) were enrolled out of 20 eligible children, achieving a 50% recruitment rate.
- A 90% follow-up rate was achieved with minimal missing data; 90% preferred e-questionnaires, though 60% required reminders.
- Baseline pain intensity varied widely (0-8/10), with spastic CP being common (90%) and GMFCS levels I-IV represented.
Conclusions:
- This pilot study confirms the feasibility of a multicenter cohort study to investigate short-term pain trajectories and their association with well-being in children with CP.
- Future studies should implement enhanced recruitment strategies and improve accessibility for participants with GMFCS Level V.
- The findings support the need for further research into pain management and well-being interventions for pediatric CP populations.
Background:
Although chronic pain is common in children with cerebral palsy (CP), little is known about short-term pain fluctuations and their impact on children's well-being. High-quality cohort studies are needed to understand the clinical course of pain in this population. We aimed to determine the feasibility of conducting a multicentre cohort study. In this pilot study we assessed: 1) study processes, 2) resource and 3) management indicators including recruitment and follow-up rates, data completeness, participant characteristics, and successes and barriers in the study conduct.
Methods:
A multi-centre pilot cohort study was conducted with 10 Canadian children/youth with CP attending one of two children's rehabilitation centers. We collected self-reported pain intensity (Faces Pain Scale-Revised [FPS-R], Numeric Rating Scale [NRS]); pain interference (PROMIS PI); pain location (pain diagram); physical and psychological well-being (KIDSCREEN-27), sleep characteristics, preceding months' interventions, and some clinical characteristics at baseline. Average pain intensity was reported weekly for five weeks. Well-being, sleep and interventions were measured at baseline and again at five weeks. We used feasibility indicators to evaluate:1) study processes (e.g. recruitment, attrition rates); 2) resources (e.g. data completion, budgetary challenges); and 3) management (e.g. data optimization, variability of participants and pain scores).
Results:
Between March and May 2019, 24 children and their parents/guardians were contacted and 20 met eligibility criteria. Of those, 10 agreed to in-person screening (50%) and were subsequently enrolled. The follow-up rate was 90% and self-reported missing data was minimal. Ninety percent of participants chose e-questionnaire follow-ups versus mailed paper questionnaires. Sixty percent required reminders to complete e-follow-ups. Participants were aged 8-17 years, five were female, GMFCS levels I-IV (none with level V), 90% had spastic CP and 80% reported having pain in the preceding week. Pain intensity (FPS-R) between participants ranged from 0-8/10 at baseline and 0-6/10 across all four weekly follow-ups.
Conclusions:
This pilot study demonstrates the feasibility of conducting a multicentre cohort study to identify short-term pain trajectories and measure their association with well-being in children and youth with CP. Additional strategies to improve recruitment and accessibility for those with GMFCS levels V should be implemented in future studies.
