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Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review
Elaine Meehan1,2, Aoife L Gallagher2,3, Jennifer Ryan4
1Ageing Research Centre, Health Research Institute, University of Limerick, Limerick, Ireland.
Insights
Adults with childhood-onset neurodisabilities face significant healthcare access barriers post-pediatric care. This review synthesizes evidence on their unmet healthcare needs to improve health equity and promote healthy aging.
Area of Science:
- Neuroscience
- Public Health
- Gerontology
Background:
- Adults with childhood-onset neurodisabilities experience healthcare access challenges after transitioning from pediatric services.
- This population faces elevated risks for age-related diseases, preventable deaths, and premature mortality compared to the general population.
- Addressing unmet healthcare needs is crucial for ensuring equitable and quality healthcare access.
Purpose of the Study:
- To systematically review and synthesize existing evidence on unmet healthcare needs in adults with diverse childhood-onset neurodisabilities.
Main Methods:
- A systematic review of quantitative studies adhering to COSMOS-E guidelines.
- Searches of major databases, followed by a two-phase screening process by independent reviewers.
- Data extraction using a designed form, risk of bias assessment (Joanna Briggs Institute tools), and potential meta-analysis or structured synthesis.
Main Results:
- The review will identify and synthesize evidence on the prevalence and nature of unmet healthcare needs in this population.
- Findings will highlight specific areas of healthcare access difficulties and associated health outcomes.
- Results will be presented through tables and narrative summaries, potentially including meta-analysis if data permits.
Conclusions:
- Findings will inform healthcare policy and decision-making for adults with neurodisabilities.
- This review has the potential to reduce preventable deaths and premature mortality.
- The study aims to promote positive and healthy aging for individuals with childhood-onset neurodisabilities.
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.
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