'Mind the Gap'-A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability.
Mirthe J Klein Haneveld, Klea Vyshka, Charlotte M W Gaasterland and 4 others
PMID 40083267WHAT IT FOUND
Caregivers of young people with rare intellectual disabilities reported the biggest gaps in healthcare transition were preparation for adult services, planning for the future, and adjusting communication to cognitive needs.
They rated being seen without parents as the least important aspect of care.
Key findings
01The largest care gaps were in helping parents support independence, planning for the future, and preparing for the move to adult services.
02Communication adjusted to the young person's cognitive and communication needs was among the top ten care gaps.
03Caregivers rated the opportunity for the young person to be seen in clinic without parents as the least important item.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The survey respondents were likely 'well connected' families with the digital and language skills to complete an online form, potentially underestimating the true care gaps for more isolated or distressed families. The study could not capture the perspectives of the young people themselves, as the survey for them had a very low response rate (<10 individuals). The sample size for the specific age group used to calculate care gaps (18–25 years) was small (n=40). The cross-sectional design prevents analysis of how care gaps change over time during the transition process. The 'Mind the Gap' scale was originally developed for juvenile idiopathic arthritis and required adaptation for this population, which may affect validity.
Declared interests
The authors declare no conflicts of interest.
The easy way to misread this
Do not assume that 'supporting independence' means encouraging the young person to attend appointments alone. Caregivers rated being seen without parents as the least important aspect of care, while valuing support for independence in daily life and future planning. Interpreting independence as autonomy from the family may misalign with caregiver priorities.