Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy.
Elisabet Rodby-Bousquet, Ann Alriksson-Schmidt, Johan Jarl
PMID 32951227WHAT IT FOUND
Two-thirds of adults with cerebral palsy report pain, with back pain most common.
Pain is significantly underreported when proxies report for patients, especially those with communication difficulties. Clinicians must ask patients directly about pain rather than relying on caregivers.
Key findings
01Current pain was reported in 66.6% of adults, with back pain being the most common site.
02Adults who self-reported pain had a higher prevalence (69.9%) and severity (27.8% severe) compared to those with proxy-reported pain (62.4% prevalence, 16.8% severe).
03Communication level was strongly associated with pain reporting; adults with the best communication (CFCS I) reported pain more frequently (72.5%) than those with poorer communication (56.5–64.9%).
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The cross-sectional design prevents establishing causal relationships between pain and functional levels. The sample included a higher proportion of adults with severe motor impairments (GMFCS level V) than the general CP population, potentially exaggerating overall prevalence figures. Most participants were not followed in the registry since childhood, limiting longitudinal context. The study did not account for other pain sources like medications, fatigue, or mental health challenges, which may influence pain reporting. Proxy reports varied between family members and professional assistants, and the study could not distinguish between them, potentially introducing bias in how pain is interpreted.
Declared interests
Funded by Forskningsrådet om Hälsa, Arbetsliv och Välfärd. No other conflicts declared.
The easy way to misread this
Do not assume that lower pain prevalence in patients with severe communication impairments means they are in less pain. The data shows proxies and patients with communication difficulties consistently underreport pain compared to self-reporting adults with better communication skills.