Unmet healthcare needs in adults with childhood onset neurodisabilities: a systematic review and narrative synthesis
Prepared by: AACPDM Digest reviewer/committee member Cherlyn Caneda, MSN, C-PNP
Keywords:
- Neurodisability
- Cerebral palsy
- Ageing
- Unmet healthcare needs
Study Type: Systematic Review
Summary:
This systematic review investigates the extent and nature of unmet healthcare needs among adults who have childhood-onset neurodisabilities (NDDs), such as autism, intellectual disability, cerebral palsy, and rare disorders. Drawing from 17 studies conducted across six countries and include a combined total of 17,385 participants, the review identifies significant and persistent gaps in healthcare access for this population. These findings highlight the ongoing challenges that adults with NDDs face in obtaining equitable, timely, and comprehensive healthcare services across the lifespan.
Adults with NDDs consistently report higher levels of unmet healthcare needs compared to the general population. The review identifies challenges in accessing psychological care, therapy services, dental care, and primary care. These unmet needs are especially acute for autistic adults and individuals with intellectual disabilities, suggesting that the type of neurodevelopmental condition influences the nature and extent of these challenges. In addition, these disparities become even more pronounced due to intersecting factors such as ethnicity, gender identity, age, and the presence of co-occurring health conditions. Adults from racial and ethnic minority groups, as well as LGBTQ+ individuals, experienced greater barriers and higher levels of unmet need.
The review also explores the underlying factors contributing to these disparities. Barriers include a lack of specialised knowledge about NDDs among healthcare providers, communication difficulties between patients and professionals, and a general lack of awareness regarding available services. Notably, more than half of autistic adults in some studies were unsure where to find suitable healthcare, underscoring the need for improved information dissemination and navigation support.
Overall, the findings demonstrate that adults with childhood-onset NDDs continue to face significant obstacles when trying to access appropriate healthcare. The review highlights that improving health literacy among healthcare providers is crucial, so they can more effectively address the specific needs of this population. The authors advocate for the application of implementation science frameworks to inform changes in medical education and clinical practice. By adopting these approaches, healthcare systems can develop targeted training and support for professionals, thereby reducing disparities and improving outcomes for adults living with NDDs.