Recurrent pain in adolescents with cerebral palsy: a longitudinal population-based study

Aim To investigate the pain characteristics, pain interference with activities of daily living, and use of analgesics in adolescents with cerebral palsy (CP) and compare the results with previous findings. Method Sixty-seven adolescents (median age 14y 4mo, range 12y 2mo-17y, 28 females, 39 males) classified in Gross Motor Function Classification System (GMFCS) levels III to V, who participated in a CP surveillance programme, were assessed on pain measures twice, 5 years apart. Primary caregivers marked recurrent pain sites and graded pain interference with activities of daily living and sleep. Information on pain severity was obtained through two questions from the Child Health Questionnaire (CHQ) and were transformed into a pain score scaled from 0 to 100, where 100 represented no pain. The use of short-acting analgesics was recorded. Results Over 5 years, the prevalence of recurrent pain, number of pain sites, pain intensity, and pain frequency all increased significantly. The most frequent pain sites were the hip/thigh in GMFCS level V and knee in GMFCS level III. The median CHQ pain score decreased from 60 to 40 (p<0.001). Pain interference with activities of daily living increased (p=0.011) but not for sleep. Twenty-eight of 54 participants with moderate or severe pain (CHQ pain score <= 60) received no short-acting analgesics. Interpretation In adolescents with CP, pain increased over 5 years despite follow-up in a surveillance programme. For enhanced management of pain, we propose that an algorithm on pain should be included in surveillance programmes.