Pain experience in young adults with cerebral palsy

Pain experience in young adults with cerebral palsy
1 Developmental Medicine, Royal Children’s Hospital, Melbourne, VIC;
2 Department of Paediatrics, University of Melbourne, Melbourne, VIC;
3 McCaughey Centre, Vic Health Centre for the Promotion of Mental Health and Community Wellbeing, School of Population Health, University of Melbourne, Melbourne, VIC;
4 Developmental Disability Research, Murdoch Children’s Research Institute, Melbourne, VIC, Australia

Background/Objectives: Improvements in paediatric care have increased the survival of young adults with cerebral palsy (CP) yet little is known about their pain experience. The aim of this study is to determine the bodily pain in young adults with CP and the associations between pain and motor disorders, functional abilities, social participation, and quality of life (QOL).
Design: Population-based study of young adults with CP based on the ICF model
Participants and Setting: A cohort of 818 young adults with CP aged 20-30 years born in Victoria, Australia was recruited from the Victorian cerebral palsy register (VCPR). Data of typically developed peers from the household, income and labour dynamics in Australia Survey 2004 were used for comparison.
Materials/Methods: Participants were asked to complete a postal questionnaire. Data on pain intensity and impact was collected from the bodily pain scale (BP) of the Short Form-36 Health Survey Questionnaire version (SF-36v2). Functional ability was assessed using the self-report version of the gross motor function classification system (GMFCS) and the barthel index. Social participation was evaluated in the areas of education, employment, living situation, marital status, and financial status. Quality of life was measured with the quality of life instruments for young adults (YAQOL). Mann-Whitney U-tests and Kruskal-Wallis tests were conducted to examine the differences in the BP scale scores. Spearman’s bivariate correlations were used to measure the strength of the associations.
Results: A total of 335 young adults with CP participated. Their mean age was 24.7 +_ 2.8 years; 51% were males; 90% had spastic CP (37% hemiplegia, 25% diplegia, 37%quadriplegia). Half of the participants were GMFCS level I or II, and 36% were independent in daily activities. Of total 335 participants, 75% had bodily pain, of which 29% reported a moderate to severe impact on normal work compared with 60% and 16% of the controls respectively. BP was associated with each domain of the YAQOL, the strongest correlation was with the physical health scale (r=0.60, P<0.0001). Lower BP scale scores were associated with a greater number of limbs affected, higher GMFCS levels, and less independence in self-care (r=0.25, -0.28, and -0.27, P<0.001) than the control group (r=0.07, P=0.002). Education level, living situation, marital status, age, and gender did not vary by BP.
Conclusions/Significance: BP is a common secondary problem for young adults with CP and the incidence, intensity and impact were higher than for their able-bodied peers. BP was associated with individual’s motor impairments and functional abilities and has a negative impact on employment and QOL. Clinical interventions to improve pain management are warranted to reduce the disease burden and improve function and QOL.

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