Up to three out of four young people with cerebral palsy (CP) experience chronic pain at varying stages of their life. Pain burden has been identified as a research priority by people with CP, however it remains under-recognized and is not routinely assessed using a biopsychosocial model in this population. Feasibility of existing chronic pain tools for children with CP is unknown.
Background and Aims
Assessment using a biopsychosocial framework is not routine for children with cerebral palsy (CP) despite the high prevalence of chronic pain (1, 2), resulting in under-identification of pain and its impact (2, 3). Clinical use of reliable and valid outcome measures depends on feasibility and pragmatic qualities, e.g., time to complete, comprehensibility (4, 5). Although there are many existing chronic pain outcome measures, the feasibility of using these for children with CP with varying communication, cognitive and functional abilities is not established (2).
The primary aim of this study was to develop a feasibility rating tool for outcome measures for children with CP. The secondary aims were to examine reliability of this tool with chronic pain measures and report feasibility of existing chronic pain tools used in children with CP.
Methods
A CP specific feasibility tool was developed based on existing literature including schemas used for a pain toolbox (6) and dimensions of appropriateness, accessibility and practicability (5). This tool was reviewed by seven stakeholders and evaluated against the COnsensus based standards for the Selection of health Measurement INstruments guidelines for feasibility.
The tool was used to rate feasibility of 41 existing chronic pain measures identified from five recent systematic reviews (6-10) that were “well established” (18). Three raters, each with > ten years’ experience working with children with CP rated each tool independently through a REDCap database.
For each tool, interrater reliability was measured using a quadratic weighted kappa.
Results
The CP specific feasibility tool contains eleven items across three concepts, each scored on a 0-2 ordinal scale with lower scores indicating lower feasibility:
Appropriateness: Target Population; Use across Gross Motor Function Classification System levels (GMFCS); Use for Augmentative and Alternative Communication; Patient comprehensibility; Clinician comprehensibility; Recall period
Practicality: Scoring; Interpretation of scores; Tool administration
Accessibility: Training requirements; Access to tool
The reliability of the 11 items combined was almost perfect at 0.88 (0.87-0.89). The weighted kappa (95%CI) for individual items ranged from “fair” 0.38 (0.16-0.61) to “near perfect” 0.84 (0.75-0.93).
One measure, (the Paediatric Pain Profile) has excellent feasibility for use with children who are unable to self-report and have severe cognitive limitations. Nine outcome measures (the PROMIS pain interference short form, Pediatric Pain Screening tool, Pain Interference Index, Modified Brief Pain Inventory, Child Activity Limitations Interview, Pain Burden Inventory for Youth, Pain Catastrophizing Scale, Fear of Pain questionnaire and Bath Adolescent Pain Questionnaire) have good feasibility, however need adaptations for use across different mobility and/or cognitive levels. Nine outcome measures have poor feasibility: they are inappropriate for children with CP, difficult to understand, and/or difficult to access.
Conclusions
The CP specific feasibility tool covers the key concepts of “Appropriateness”, “Practicality for clinical use” and “Accessibility” and is reliable for rating feasibility of chronic pain outcome measures. The tool is able to distinguish measures that have poor feasibility for use with the heterogenous population of children with CP.
