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Published on: February 2, 2024
Health care transition for cerebral palsy with intellectual disabilities: A systematic review
M Osako1, Y Yamaoka2, C Takeuchi1
1Department of Neurology, Tokyo Metropolitan Kita Medical and Rehabilitation Center for the Disabled, 1-2-3 Jujodai, Kita-ku, Tokyo 114-0033, Japan.
Insights
Most adults with cerebral palsy require a transition from pediatric to adult healthcare but often do not receive it. This review found young adults with cerebral palsy reported dissatisfaction with care experience, population health, and cost.
Area of Science:
- Healthcare transition research
- Cerebral palsy care management
- Public health and disability
Background:
- The majority of individuals with cerebral palsy (CP) are now adults requiring transition from pediatric to adult healthcare.
- Many adults with CP remain in pediatric care, receiving treatment for adult-onset conditions.
- Effective healthcare transition is crucial for managing long-term health needs in adults with CP.
Approach:
- A systematic review was conducted using the 'Triple Aim' framework (care experience, population health, cost).
- PubMed searches identified original articles published between 1990 and 2020.
- Included studies were epidemiological, case reports, case-control, and cross-sectional, excluding qualitative research.
Key Points:
- Only thirteen articles met the inclusion criteria, indicating a gap in research on CP healthcare transition interventions.
- Young adults with CP reported dissatisfaction across all 'Triple Aim' domains: care experience, population health, and cost.
- Identified issues include unmet health needs and inadequate social participation among young adults with CP.
Conclusions:
- Further research is needed on comprehensive transition interventions for adults with CP.
- Proactive involvement of individuals with CP in transition planning is essential.
- The impact of intellectual disability on healthcare transition outcomes requires consideration.
Objective:
Today, most individuals with cerebral palsy are adults who need a paediatric-to-adult health care transition. However, many remain in paediatric care for treatment of adult-onset health issues. Therefore, a systematic review based on the 'Triple Aim' framework was performed to determine the status of paediatric-to-adult health care transition for people with cerebral palsy. A comprehensive evaluation of transitional care was proposed for using this framework. It consists of 'experience of care', meaning satisfaction with the care, 'population health', meaning the well-being of patients, and 'cost', meaning cost-effectiveness.
Method:
Electronic database (PubMed) searches were performed. The inclusion criteria were original articles published between 1990 and 2020. The search terms used in this study were ('cerebral palsy' AND 'transition to adult health care') OR ('cerebral palsy' AND 'transition'). The study type had to be epidemiological, case report, case-control, and cross-sectional, but not qualitative. The outcomes of the studies were categorised into 'care experience', 'population health', and 'cost', according to the Triple Aim framework.
Results:
Thirteen articles met the abovementioned inclusion criteria. Few studies have examined the effect of the intervention of transition for young adults with cerebral palsy. Participants in some studies had no intellectual disability. Young adults were dissatisfied with the 'care experience', 'population health', and 'cost' and had unmet health needs and inadequate social participation.
Interpretation:
Further transition intervention studies with a comprehensive assessment and proactive involvement of individuals are warranted. The presence of an intellectual disability should be considered.
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