Abstract
Objectives: To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills.Methods: Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16–78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner.Results: Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20–64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I.Conclusion: Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life.
Highlights
Today, most adults with cerebral palsy (CP) have a full life expectancy (1)
The adults were examined regularly by their local adult specialist team, according to a schedule based on their level of the Gross Motor Function Classification System (GMFCS)
We found that most adults either lived with their parents (43.3%) or in independent living (41.3%), whereas only 13.1% lived in assisted-living facilities
Summary
The prevalence of CP is estimated to be 17 million individuals worldwide (2) Those with the most severe impairments have poor survival, but the surviving adults have significantly fewer impairments, regarding severe motor impairment, intellectual disability and epilepsy (3). Individuals with neurodevelopmental conditions such as CP are less likely to pursue post-secondary education. They experience lower employment rates and participate in fewer leisure and social activities. In daily life, they rely more on their families for living arrangements, and adults with CP experience poorer health than their peers without disabilities. Population-based studies may increase our understanding of the living conditions of adults with CP, leading to knowledge that facilitates the distribution of resources (3)
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