Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review

Elaine Meehan; Aoife L Gallagher; Jennifer Ryan; Claire Kerr; Rory O' Sullivan; Rose Galvin; Manjula Manikandan; Andrew Wormald; Katie Robinson

doi:10.12688/hrbopenres.13309.1

Unmet healthcare needs in adults with childhood-onset neurodisabilities: a protocol for a systematic review

HRB Open Res. 2021 Sep 28:4:107. doi: 10.12688/hrbopenres.13309.1. eCollection 2021.

Authors

Elaine Meehan^{1

2}, Aoife L Gallagher^{2

3}, Jennifer Ryan⁴, Claire Kerr⁵, Rory O' Sullivan⁶, Rose Galvin^{1

2}, Manjula Manikandan⁴, Andrew Wormald^{1

2}, Katie Robinson^{1

2}

Affiliations

¹ Ageing Research Centre, Health Research Institute, University of Limerick, Limerick, Ireland.
² School of Allied Health, University of Limerick, Limerick, Ireland.
³ Health Implementation Science and Technology Research Cluster, Health Research Institute, University of Limerick, Limerick, Ireland.
⁴ Division of Population Health Sciences, Royal College of Surgeons in Ireland, Dublin, Ireland.
⁵ School of Nursing and Midwifery, Queen's University Belfast, Belfast, UK.
⁶ Central Remedial Clinic, Dublin, Ireland.

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.

Keywords: Neurodisability; ageing; cerebral palsy; developmental disabilities; health services research.; healthcare access; intellectual disability; unmet healthcare needs.

Grants and funding

Elaine Meehan was supported by funding from the Health Research Institute, University of Limerick. Elaine Meehan was also part supported by the Health Research Board (Ireland) and the HSC Public Health Agency (Grant number CBES-2018-001) through Evidence Synthesis Ireland/Cochrane Ireland.