Prevalence of pain and interference with daily activities and sleep in adults with cerebral palsy

Aim To analyse the prevalence of pain, pain sites, pain severity, and pain interfering with work or daily activities and sleep in adults with cerebral palsy (CP). Method This was a cross‐sectional study based on data from 1591 adults (16–76y, median age 25y; 879 males, 712 females; Communication Function Classification System [CFCS] levels I–V) in the Swedish Cerebral Palsy Follow‐up Program. Pain severity was rated for several body sites and pain interference with activities/work and sleep was also evaluated. Logistic regression was used to estimate the odds ratios (ORs) of the factors associated with the prevalence of pain and pain interfering with activities/work or sleep. Results Pain was reported in 1059 of 1591 adults; a higher proportion self‐reported pain (69.9%) compared to proxy‐reported pain (62.4%). More adults classified in CFCS level I (72.5%) reported pain compared to those in CFCS levels II to V (56.5–64.9%). Adults with severe/very severe pain had a sixfold risk of pain interfering with activity/work (OR=6.68; 95% CI 4.99–8.96) and sleep (OR=6.60; 95% CI 4.84–8.98). Interpretation Two‐thirds of adults with CP experienced pain, which is likely to be underreported in individuals who do not communicate efficiently or rely on proxy reports. Pain strongly interfered with activities and sleep; thus, it must be assessed and treated more effectively.