Abstract
Background Many adults with childhood-onset neurodisabilities, such as those with intellectual disability or cerebral palsy, report difficulties accessing the healthcare that they require when they are no longer eligible for paediatric services. Compared to the general population, this population is at greater risk of developing many ageing-related diseases and has higher rates of preventable deaths and premature mortality. Addressing unmet healthcare needs is essential to ensuring equitable access in a quality healthcare system. The aim of this systematic review is to synthesise the current available evidence related to unmet healthcare needs in adults with a range of childhood-onset neurodisabilities. Methods A systematic review of quantitative research studies of adults with a range of diagnoses that fall under the neurodisability umbrella and outcomes related to unmet healthcare needs will be undertaken. The Conducting Systematic Reviews and Meta-Analyses of Observational Studies (COSMOS-E) guidelines will be adhered to. Searches of key databases will be undertaken, and a two-phase screening process carried out by pairs of independent reviewers to select studies that meet the inclusion criteria. Data will be extracted using a purposefully designed form. Risk of bias will be assessed using the Joanna Briggs Institute Critical Appraisal Tools. If it is possible to pool prevalence data, a meta-analysis will be undertaken. Where pooling of data is not possible, a structured synthesis approach will be used, and results will be presented in tables and summarised narratively. Conclusions In recent years, there has been increased emphasis placed on promoting positive ageing and improving the healthcare experiences throughout the lifespan for people with neurodisabilities. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group.
Highlights
Neurodisability is an umbrella term for a range of lifelong physical and neurological conditions that are evident early in childhood, attributed to impairments of the brain or neuromuscular system and associated with functional limitations and difficulties with movement, cognition, hearing and vision, communication, emotion, and behaviour[1]
Examples of diagnoses that fall under this umbrella include intellectual disability, Down syndrome, cerebral palsy, spina bifida and autism spectrum disorder[2]
The latest combined data from two European surveys - the European Union Statistics on Income and Living Conditions (EU-SILC) instrument and the second wave of the European Health Interview Survey (EHIS), indicate that across the 28 EU countries surveyed, 26.5% of the population have at least one unmet healthcare need due to costs, distance or waiting lists[36]
Summary
Any reports and responses or comments on the article can be found at the end of the article. Findings of this systematic review can inform decision-making related to healthcare for this vulnerable population and has the potential to contribute to reducing preventable deaths and premature mortality and promoting positive and healthy ageing for this group. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
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