Preserving health and vitality in CP adults
Towards a lifespan perspective
A. Systematic development of an ICF core set of outcomes for adults with Cerebral Palsy
The aim of this project was to develop ICF Core Sets for adults with Cerebral Palsy (CP), following the systematic ICF methodology (International Classification of Functioning, Disability and Health, of the World Health Organization). The results serve as a basis to reach international consensus on the most relevant aspects of functioning of adults with CP, see Project: ICF Core Sets for adults with CP.
We performed four studies using different perspectives:
- A systematic literature review: 274 articles were included; walking, pain and (paid) work are the most frequently studied outcomes;
- A qualitative study among 38 adults with or without intellectual disability; they identified a wide range of problems, and underlined the importance of the environment for functioning;
- An experts study; in an online survey 126 health professionals and researchers from 32 countries identified a broad variation of problems for adults with CP, from impairments to participation restrictions, reflecting the heterogeneity of CP.
- An international empirical study on common problems in 86 adults with CP in the Netherlands, Thailand and Sweden, seen in health care services. They have a diversity of problems in functioning, which are highly prevalent, and environmental factors were often indicated as facilitating.
B. Utilizing national and international datasets in CP: data pooling
Within national and international consortia, various datasets of people with CP are available for different age groups. By combining the different datasets in a meta-analysis, large and international insights into health aspects in adults with CP can be gained.In this project we performed such a meta-analysis using individual patient data to calculate reliable estimates of blood pressure and prevalence of hypertension in adults with CP. Data from 11 samples totaling 444 adults with CP from Europe, America and South Africa were included. The meta-analysis shows that almost one third of the adults with CP in the relatively young cohort (mean age 31.9 years) have hypertension. Adults with CP older than 40 years have hypertension more often than young adults with CP (18-29 years). Hypertension is relatively common in America and South Africa, compared to Europe. The results underline the importance of clinical screening for blood pressure in adults with CP from a young age onwards.
C. Translational research
This part of the project is a follow-up to research by Joyce Benner (PhD, 2019).With an international consortium with Mc Master University, Hamilton, Canada; Dept Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USA and De Hoogstraat/ UMC Utrecht, we performed a feasibility study on routine outcome measurements of vitality and (cardiovascular) health of adults and elderly with CP. Adults with CP score low on fitness, physical activity, healthy diets and sleep quality and valued these outcomes as most important to discuss with their doctor.