Endocrine Abstracts

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: 49 service questionnaires were completed (25 by adult endocrinologists) representing 35 centres across the UK and the Republic of Ireland. 233 YP (median age 17.3) and 200 parent questionnaires from 24 centres were also completed. Out of 16 You’re welcome criteria (Quality Criteria for YP Friendly Health Services) the median number achieved by each centre was seven (range 3–12). Criteria recorded as achieved in >80% were YP being given the opportunity to be seen on their own, encouraging independence and discussing transition issues, <20% achieved giving YP a hand-held summary at the time of transfer, running clinics outside school/college hours and YP involvement in service evaluation and design. YP reported organising their own medications in 65%, being seen alone in 19% and contacting the hospital in 13%. YP identified the most important aspects of endocrine care (scoring greater than 6 out of 7) were three provider characteristics (staff that are knowledgeable, provide honest explanations and treat them with respect) and 1 process issue (having appointment times that are convenient). Gaps in care were identified in all areas but were greatest in 2 process issues (having appointment times that are convenient and not wasting their time) and 1 related to the environment not being suitable for their age.

Conclusion: Most services are achieving less than 50% of criteria associated with high quality care for YP. Despite services encouraging independence in being seen alone only 19% of YP report this occurring most or all of the time. The ‘Mind the Gap’ questionnaire is a useful tool to understand YP and parent experience.

Funded by Clinical Endocrinology Trust.