'The Lost Tribe': A study of transition care in Lothian

Aims: The management of a chronic disease is challenging during the transition to adulthood. This study examined the follow-up status, glycated haemoglobin (HbA1c) and complication rates in 18-23 year olds with type 1 diabetes mellitus in the Royal Infirmary Edinburgh (RIE) and Roodlands Hospital, Haddington (RHH). Methods: Subjects were identified by date of birth using Scottish Care Information - Diabetes Collaboration. Follow-up status, median HbA_1c, albumin:creatinine ratio, and complications were recorded for the last year of adolescent follow-up and years 1-5 from transition. Results: 100 subjects were studied; 77 from RIE (39 female) and 23 from RHH (7 female). RIE and RHH respectively lost 20.8% and 34.8% to follow-up. Median HbA1c at RIE fell from 85 mmol/mol to 77 mmol/mol by year 4 and, at RHH, from 79 mmol/mol to 65 mmol/mol by year 4. These HbA1c changes were potentially driven by patients lost to followup, who had higher baseline HbA1c (RIE: 91 mmol/mol; RHH: 90 mmol/mol). 12 patients had microalbuminuria after transition to adult care. Retinopathy was recorded in 36% at year 5. There were 0.23 diabetes-related hospital admissions per subject per year and no recorded deaths. Conclusions: High losses to follow-up are worrying. Those with higher HbA1c appear most at risk. Complication and admission rates are high, underlining the importance of engagement with patients during transition.