Background: Transition is an important stage in the care of a young person with a long term endocrine condition.
Objective: To explore current services for young people (YP) with endocrine conditions from the perspective of paediatric and adult endocrinologists, and YP and their parents using their services.
Methods: There were two components: i) service questionnaire for completion by paediatric and adult endocrinologists. ii) Mind the Gap questionnaire for completion by YP and parents.
Results: Forty-nine service questionnaires were completed (25 by adult endocrinologists) representing 35 centres across the UK and the Republic of Ireland. 233 YP and 200 parent questionnaires from 24 centres were also completed. Out of 16 Youre Welcome criteria (Quality Criteria for YP Friendly Health Services) the median number achieved by each centre was 7 (range 312). The least frequently achieved criteria were giving YP a hand-held summary at the time of transfer, running clinics outside school/college hours, YP involvement in service evaluation and design and publicising other services for YP. Clinic structure to support transition was available in 80% included multiple joint appointments in 21, single joint appointment in six, age banded clinics were used in two services. Three services had a structured transition programme. 50% of paediatric and adult endocrinologists identified lack of psychosocial support and time as the greatest barriers, in comments paediatric endocrinologists raised concerns about adult services. 56% of services were considered less developed than those in diabetes. 69% of services were undergoing development and 58% with plans.
Conclusion: Despite clinic structures to support transition being in place, most services are achieving <50% of criteria associated with high quality care for YP. One criteria, involving YP in evaluating and designing services, was achieved in 23%. The Mind the Gap questionnaire will be a useful tool to understand YP and parent experience.
Funded by Clinical Endocrinology Trust.