Background The importance of a holistic transfer document highlighting a young person’s (YP) needs to enable a smooth transition from paediatric to adult services has been well recognised. This has become especially apparent for young people living with neurodevelopmental health needs in recent years. To facilitate this process, a ‘Transition transfer document’ (TTD) exemplar for YP with a complex neuro-disability was co-produced with families and professionals.
To determine if transition transfer documents were routinely developed for YP with complex health needs by the age of 17.
To determine if clinicians found the transition transfer documents or exemplar document useful.
Methods A search of electronic patient records was undertaken to identify young people aged 17 to 18 as of 01/07/2019 with a complex neuro-disability and an educational health care plan. 60 were identified and their records were reviewed. A SurveyMonkey questionnaire was sent to 11 paediatricians and 64 General Practitioners (GPs) alongside a TTD exemplar document. Data was entered and analysed using the Microsoft Excel formulaic analysis.
Results Complete documentation was available on 43 young people. One person had a TTD; the most appropriate clinic letter, containing the most relevant details to the transition process, was used as a proxy transfer document in the remaining 42. In 25.6% of the young people, a formal transition process had been initiated. The result of the analysis of 43 clinic letters or transition transfer documents can be seen in table 1.
The questionnaire response rate was 14.1% (9/64) for GPs and 81.8% (9/11) for paediatricians. 66.6% of paediatricians and 77.8% of GPs rated the TTD exemplar ³ 3 out of 5 for helpfulness in practice. Qualitative data collected showed that lack of time and lack of joint services were common issues identified by both groups.
Conclusions Transition transfer documents are neither routinely nor consistently created for young people with complex neurodevelopmental needs. There is inconsistency identified in the details provided by clinic letters or TTDs in young people of transitioning age and only one 17-year-old in the population had a completed TTD. The transition transfer documents were deemed useful in theory by the majority of clinicians, however the lack of routine use of TTDs limits their impact. The use of a TTD exemplar can be improved and thus facilitate a smooth transition to adult services for young people with complex neuro-disabilities.
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