Transition to adult services experienced by young people with cerebral palsy: A cross-sectional study.
Jennifer M Ryan, Michael Walsh, Mary Owens and 8 others
PMID 35729753WHAT IT FOUND
Most young people with cerebral palsy did not experience key transition practices.
Only 13% had a written plan, 16% met the adult team, and 10% knew their GP got a discharge letter. Services reported providing these practices more often than young people experienced them.
Key findings
01Except for parent involvement, fewer than 40% of young people experienced any of the nine key transition practices, including written plans (13%) and meeting the adult team (16%).
02Health professionals reported providing transition practices more frequently than young people experienced them, such as written transition plans (63% provided vs 13% experienced).
03Post-discharge, only 10% of young people knew their GP had received a discharge letter, while 56% of professionals reported sending one when no adult service was available.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Response bias: Young people with poorer experiences may have been more likely to participate. Proxy reporting: 64% of questionnaires were completed by parents or with parental support, which may not reflect the young person's own experience. Lack of precision: The associations between factors (like GMFCS level) and transition experiences had wide confidence intervals. No direct comparison: The study did not match individual young people's experiences with the specific services they attended, so discrepancies between provider and user reports cannot be fully explained. Recall bias: Post-discharge participants were recalling events over a longer period.
Declared interests
Funded by the Health Research Board and the Central Remedial Clinic. No other conflicts of interest were declared.
The easy way to misread this
Do not assume that because a service reports providing a transition practice (e.g., a written plan), the young person has received it. The study shows a significant gap between professional reporting and patient experience, likely due to informal delivery or lack of recognition by the patient.