Are the health needs of young people with cerebral palsy met during transition from child to adult health care?

Abstract

BackgroundThe transition from child to adult health care is a particular challenge for young people with cerebral palsy, who have a range of needs. The measurement of reported needs, and in particular unmet needs, is one means to assess the effectiveness of services.MethodsWe recruited 106 young people with cerebral palsy, before transfer from child services, along with their parents to a 3‐year longitudinal study. Reported needs were measured with an 11‐item questionnaire covering speech, mobility, positioning, equipment, pain, epilepsy, weight, control of movement, bone or joint problems, curvature of the back, and eyesight. Categorical principal component analysis was used to create factor scores for bivariate and regression analyses.ResultsA high level of reported needs was identified particularly for control of movement, mobility, and equipment, but these areas were generally being addressed by services. The highest areas of unmet needs were for management of pain, bone or joint problems, and speech. Analysis of unmet needs yielded two factor scores, daily living health care and medical care. Unmet needs in daily living health care were related to severity of motor impairment and to attending nonspecialist education. Unmet needs tended to increase over time but were not significantly (p > .05) related to whether the young person had transferred from child services.ConclusionsReporting of unmet needs can indicate where service development is required, and we have shown that the approach to measurement can be improved. As the number of unmet health needs at the start of transition is considerable, unmet health needs after transition cannot all be attributed to poor transitional health care. The range and continuation of needs of young people with cerebral palsy argue for close liaison between adult services and child services and creation of models of practice to improve coordination.

Transitions from child to adult health care for young people with intellectual disabilities: A systematic review

“…This review reveals that current services are often ill-prepared to respond to these multifaceted health needs of young people with ID at the point of transition from paediatric to adult health care wider evidence pointing to poor experience of health transitions for young people with a range of chronic conditions (Heery, Sheehan, While, & Coyne, 2015;Singh & Tuomainen, 2015;Solanke, Colver, & McConachie, 2018) and a lack of research to evaluate focussed interventions (Campbell et al, 2016).…”

Facilitating transition of young people with long-term health conditions from children’s to adults’ healthcare services – implications of a 5-year research programme

“…[4][5][6][7][8] Disabling conditions such as cerebral palsy give rise to symptoms including pain and spasticity which may not be adequately addressed during transition. 9 Few young adults with neurodevelopmental disorders such as autism spectrum disorder (ASD) attain their potential for employment, relationships and participation in society. 10,11 Such problems are recognised internationally.…”

Developing an ICF Core Set for adults with cerebral palsy: A Global expert survey of relevant functions and contextual factors

“…In the present study, immediate families were identified as the most important persons for adults with CP, since many of them still lived with their pa- e160 Products and technology of land development 20 (15.9) e575 General social support services, systems and policies 20 (15.9) www.medicaljournals.se/jrm rents or needed support from their family. The experts also regularly commented on "Services, systems and policies", of which health services were the most often indicated, showing the awareness of the experts of the need to continue healthcare services for persons with CP during their transition to adulthood and thereafter (21,25,26). Notably, the experts considered most Environ mental factors as both supportive and hindering factors for adults with CP, except for "Societal attitudes", which was indicated only as a hindering factor.…”