Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study

Abstract

Objectives To evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation.Design Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics.Setting Eight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources.Participants 1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children.Main outcome measure Children’s participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation.Results Children with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals.Conclusions Participation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.

Characteristics of Pain in Children and Youth With Cerebral Palsy

“…Studies have shown that children with CP and pain are less likely to participate in life situations and have a lower quality of life. 1,2 Although clinicians are responsible for identifying and treating pain, communication challenges of the child with CP and multiple pain etiologies often complicate this process. 3 Pain in children and youth with CP is reported in the literature by 14% to 73% of caregivers and in 60% of subjects who can self-report.…”

Time to take notice: what about fatigue?

“…Lower levels of mobility participation were associated with higher levels of pain and reduced walking ability in a population-based sample of young people with CP. 5 In this paper, selfreported total fatigue was higher in females than in males, and was associated with living in areas of low socioeconomic status and with low physical activity, while it was not associated with body weight or functional impairment level. The lack of any relationship between the degree of functional impairment (Gillette Functional Assessment Questionnaire) and self-reported fatigue may be related to the fact that the sample of children included in the study had spent a good deal of their childhood in therapy/adaptive programs designed to enhance their physical function.…”

“…Fragala-Pinkham et al 5 have helped move this research question forward in their paper describing the validation of the OMNI Walk/Run Rating of Perceived Exertion (OMNI-RPE) scale for ambulatory children and adolescents with CP. In this study the authors recognize the importance of measuring perceived exertion for individuals with CP in a practical manner.…”

“…In this study the authors recognize the importance of measuring perceived exertion for individuals with CP in a practical manner. 5 The traditional methods of gathering information about exercise intensity from objective laboratory measures such as oxygen consumption, heart rate monitors, or accelerometry are useful for academic research and to clinicians prescribing exercise programs; however, there are concerns with cost and participation burden and impact of testing for the individuals providing the data. Instead, a simple perceived exertion measure allows for individuals with CP to self-administer this measure beyond the initial exercise prescription meeting and use it as a management tool throughout the activities that generate fatigue.…”

Chronic Pain Assessment Tools for Cerebral Palsy: A Systematic Review

“…9,11,12 Unrecognized pain can have negative implications on health and quality of life, with the possibility that childhood pain will persist and progress into adulthood. 1,9,11,[13][14][15][16][17][18][19][20] Chronic pain can significantly interfere with participation in daily living activities, both as a result of limited mobility resulting from the source of pain and fear-driven avoidance of specific activities. 8,15,16,[21][22][23][24] Childhood chronic pain has been associated with disturbances in sleep, increased fatigue, depression, and decreased physical functioning.…”