P21 In transition but not documented: a cross-Trust evaluation of the Sheffield rheumatology transition pathway

Abstract

Background: Healthcare transition describes the planned, purposeful, holistic process of the transfer of young people from children's to adult services with continued, tailored care post-transfer. Transition and transfer are recognised to be potentially stressful for young people and their families. Both NICE and EULAR have published transition standards. Sheffield has a seamless adolescent and young adult (AYA) rheumatology service with a well-developed transitional pathway between Sheffield Children's Hospital (SCH) and Sheffield Teaching Hospitals (STH). This six-week medical student project evaluated patient experience of transition, in relation to transition guidelines, in pre and post transfer cohorts using questionnaire methodology. The project was registered under local service evaluation permissions. Methods: Two cohorts were evaluated between 8.5.18-14.6.18: pretransfer (SCH) in a weekly transition clinic-four patients per week, ages 11-16 and post-transfer (STH) with three young adult clinics per week-average 12 transfer patients (ages 16-25). The post-transfer questionnaire was piloted/developed/validated in the Newcastle young adult rheumatology service using parameters from NICE and EULAR guidance on transition. The complementary pre-transfer cohort questionnaires were developed by the students completing this project; a simplified questionnaire for SCH patients and a detailed version for their guardians, which was piloted in clinic to ensure its suitability. Questionnaires were distributed in clinics and anonymised data was analysed in excel. Results: Estimated response rates based on usual clinic attendances: pre-transfer 70% (14 parent, 14 children) and post transfer 43% (26 young people). Results are summarised in Table 1 below. Conclusion: Results show that the majority of patients, both pre and post transfer, recalled transition being discussed with them and reported high levels of satisfaction with their medical care. There was poor documentation of formal transition processes (i.e. written transition plans) and variable knowledge of transition key workers. In the post transfer cohort, individuals reported being poorly supported in their vocational life. This demonstrates some specific areas for service improvement and has led the students to devise and pilot a patient held transition record as well as information banners for the transition clinic to prompt awareness of transition and signpost service users to additional resources.