Assessing the Adequacy of the Physical, Social and Attitudinal Environment to the Specific Needs of Young Adults with Cerebral Palsy: the European Adult Environment Questionnaire

Abstract

Objectives: To present the development of the European Adult Environment Questionnaire (EAEQ), to assess to what extent it covers the International Classification of Functioning, Disability and Health (ICF), and to describe the adequacy of the physical, social, and attitudinal environment to the specific needs of young adults with cerebral palsy (CP). Design: Cross-sectional. Setting: Administrative regions in France, Germany, Italy, Portugal, and Sweden. Participants: Young adults with CP (N=357), with varying severity profiles, aged 19-28 years at time of interview (2018-20). Interventions: Not applicable. Main Outcome Measure(s): Physical, social, and attitudinal environment unmet needs. Results: Relevant environmental factors (EFs) for young adults with CP were identified during focus groups in England and Portugal. EFs were mapped to the ICF environmental classification and the EAEQ analytical structure resulted from this linking procedure. It comprised 61 items, linked to 31 ICF environmental classification categories, and covered 4 of its 5 chapters. Content validity assessed with the bandwidth index (percentage coverage of ICF Core Sets for adults with CP) was satisfactory (79.3%). A descriptive analysis was carried out. Participants had a mean age of 24 years, 56% were men, 38% had severely limited mobility. Less than 16% reported unmet needs for EFs relating to home, college/work/day placement, and communication in the Products and technology chapter. Unmet needs were higher (>20%) for the other items in the Public use and Land development categories. Social support, attitudes, and understanding of relatives were often adequate to the participants’ needs. The proportion of unmet needs varied by sex (women were more often concerned) and raised with increasing gross motor impairment. Conclusion: The EAEQ describes in detail the adequacy of the environment to the specific needs of young adults with CP. Its ICF-based structure opens up possibilities for use in a universal conceptual framewor