Factors associated with pain in adolescents with bilateral cerebral palsy

Abstract

Aim We explored factors associated with pain and its severity in a population cohort of young people with bilateral cerebral palsy, comparing parent/carer and young people self‐reports. Method Of 278 survivors (mean age 16y 8mo, SD 1y 4mo, range 13y 8mo–19y 3mo) from the South Thames in the Study of Hips and Physical Experience cohort of 338 young people with bilateral cerebral palsy, 212 parents/carers and 153 young people completed questionnaires on the presence, severity, timing, site, associated factors, impact, and treatment of pain. Results Seventy per cent of parents/carers reported pain within 3 months, 59% the previous week, and 50% the previous day with 56% reporting ‘regularly experienced’. Of young people able to do so, 63% reported pain within 3 months, 50% the previous week, and 42% the previous day, with 48% reporting regular pain. There was strong agreement between the parent/carer and young people, reporting pain severity over the previous 3 months. Pain severity was associated with increased motor impairment and comorbidity, particularly constipation, spasticity, equipment use, and higher emotional score, but not sex, intellectual disability, speech, or maternal education. Multiple sites of musculoskeletal pain were reported in two‐thirds of individuals. Pain was associated with voluntary movement in individuals with less motor impairment and with being moved in those with severe motor impairment. Greater pain severity had a negative effect on both physical and psychological quality of life. Interpretation Increasing awareness of the comorbidities in cerebral palsy may aid effective treatment, reducing pain experienced by young people with cerebral palsy. What this study adds Regular moderate or severe pain is reported in young people with bilateral cerebral palsy (CP) in all Gross Motor Function Classification System levels. Pain is reported more frequently in young people who are non‐ambulant. General ill health is strongly associated with severity of pain after controlling for severity of CP, especially constipation. Pain occurs most often in ambulant young people during voluntary activity and in those who are non‐ambulant when being moved. There is strong agreement between parents/carers and young people about pain presence and severity.

Helping young people with cerebral palsy in pain

“…Pain is a frequent and unwelcome companion of young people with cerebral palsy (CP). The paper by Fairhurst et al . confirms the frequency and severity of pain experienced by young people with CP as described in previous studies, including the SPARCLE Study .…”

Mortality risk among adults with cerebral palsy: alarming findings and lingering questions

“…Pain is a frequent and unwelcome companion of young people with cerebral palsy (CP). The paper by Fairhurst et al 1 confirms the frequency and severity of pain experienced by young people with CP as described in previous studies, including the SPARCLE Study. 2 Pain experienced by adolescents with CP has an adverse impact on all aspects of daily life.…”

“…The paper by Ryan et al helps reduce this gap in the literature for adults with CP. 1 Results from their study confirm that adults with CP have high rates of death from respiratory disease and circulatory disease, although this does not constitute the real contribution of this study. The primary contribution is that the authors move beyond a simple report of cause of death trends, and provide comparative cause of death trends between adults with and without CP.…”

Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

“…Pain, the most common comorbidity in cerebral palsy (CP), has been identified as a central factor behind reduced quality of health and reduced participation in everyday activities reported by individuals with CP [1,2]. In a study exploring the health status of young adults with CP, pain, fatigue, and depression were present to a large extent, and pain interference was the only factor contributing to the variance in health status [3].…”

“…Pain prevalence has been reported to vary broadly, from 14% to 76%, in children and adults with CP [11]. Pain occurs in all CP subtypes and across all gross motor levels (GMFCS) [1,[11][12][13][14]. More frequent pain has been reported in children with more extensive disability than in children with less severe CP [8,11,15,16].…”