Unmet healthcare needs in adults with childhood-onset neurodisabilities: a systematic review and narrative synthesis

PURPOSE: To synthesise the literature regarding prevalence and types of unmet healthcare needs amongst adults with neurodevelopmental disabilities (NDDs) and to summarise the reasons for, and factors associated with these needs.

MATERIALS AND METHODS: Searches of electronic databases ( n  = 5) were completed in November 2024. Papers were included if they had an observational study design and focused on unmet health needs of adults with NDDs. Screening of papers was undertaken independently by two reviewers, initially by title and abstract ( n  = 7802), and then full text ( n  = 55). Included papers ( n  = 17) were independently appraised for quality. Data were synthesised using narrative analysis.

RESULTS: The prevalence of unmet needs appears higher for adults with NDDs than the general population across the pooled sample ( n  = 17,385). Unmet psychological needs were most frequently reported, followed by unmet therapy needs. Disability type, and the co-occurrence of psychiatric conditions increased the odds of having unmet needs, particularly for those from minority groups. Reasons for unmet needs related primarily to barriers at the practitioner level.

CONCLUSION: The need to enhance the health literacy competencies of practitioners is highlighted. The use of implementation science theories can advance the development and uptake of health literacy interventions in medical education and healthcare practice.