ABSTRACT
Introduction: Optimizing care for young adults with cerebral palsy is crucial for their physical and psychological well-being. The inadequacy of proximal environment may play a role in the provision of health services. The aim of this study is to explore the association between unmet environmental needs in the physical, social and attitudinal domains and unmet healthcare needs in four interventions: physiotherapy, occupational therapy, speech therapy and psychological counselling. Methods: Young adults with cerebral palsy were recruited in the SPARCLE3 European multicenter cross-sectional study. Healthcare needs and coverages were assessed using the Youth Health Care, Satisfaction, Utilization and Needs questionnaire. The need and availability of environmental factors in physical, social and attitudinal domains were collected using the European Adult Environment Questionnaire. Logistic regressions were conducted separately for each intervention to measure associations between unmet environmental needs and unmet healthcare needs. Results: We studied 310 young adults with cerebral palsy, with a mean age of 24.3 years; 37.4% could not walk independently, 51.5% had an IQ below 70, 34.2% had severe communication difficulties. The most commonly expressed need was physiotherapy (81.6% of participants). Unmet healthcare needs were reported by 20.9%, 32.4%, 40.3% and 49.0% of participants requiring physiotherapy, occupational therapy, psychological counselling and speech therapy, respectively. The physical environment was never significantly associated with unmet healthcare needs. In contrast, the social environment was significantly associated with unmet healthcare needs across all interventions, with odds ratios over 2.5, depending on the number of unmet needs and the nature of intervention needed. With regard to the attitudinal environment, when at least one unmet attitudinal environmental need was reported, the odds of also reporting an unmet healthcare need were of 3.68 for speech therapy and 3.77 for physiotherapy. The latter association was significant only for individuals with severe motor impairment. Discussion: Our results highlight the importance of the social and attitudinal environment in meeting healthcare needs in young adults with cerebral palsy. The lack of correlation between unmet healthcare needs and the physical environment suggests that it can be partly compensated for by social support.
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 framework.
