Destination unknown: Parents and healthcare professionals' perspectives on transition from paediatric to adult care in Down syndrome.
Vincent J T Peters, Levinus A Bok, Lieke de Beer and 3 others
PMID 35665576WHAT IT FOUND
Parents of children with Down syndrome and healthcare professionals in the Netherlands described transition to adult care as inconsistent and poorly prepared.
They wanted early information, coordinated handoffs, and continuity of care. The paper reports perspectives, not tested care.
Key findings
01Paediatricians said transition was usually first discussed when the child was about 17, and no formal transition protocol was available.
02Parents and paediatricians preferred a warm handoff, where the paediatrician, intellectual disability physician, child and parents discuss the medical situation together, but time, planning and costs were seen as barriers.
03After transition, parents said medical and personal information had been lost, so they had to retell the same story and rebuild trust with adult care providers.
STILL TO COME
How it was doneWhat they found
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What it does not show
The findings are from one region of the Netherlands, and the authors say it is unknown whether they apply elsewhere. Most parents were current or past patients of the paediatricians on the research team, and all healthcare professionals worked in the same large region, so the sample may not represent wider experiences. Parents were interviewed as proxies for their children; the children and adults with Down syndrome were not included, so their own transition experiences are missing. The study reports experiences, concerns and needs; it does not test whether a warm handoff, transition coordinator or proposed framework improves care.
The easy way to misread this
Do not treat the preferred warm handoff or proposed framework as evidence that transition will improve. The paper describes what parents and healthcare professionals experienced and wanted; it did not test these approaches or report patient outcomes.