Endocrine Abstracts

Objectives: Osteogenesis Imperfecta (OI) is a genetic disorder characterised by bone fragility and predisposition to fracture. The increased risk of fracture and skeletal morbidity in this patient cohort is lifelong. Long-term follow-up is important in addressing health needs. The aim of this retrospective clinic review was to evaluate the success of transition in OI and to determine factors influencing long-term follow-up in adult services.

Methods: Young people attending the Complex Bone Clinic at Glasgow’s Royal Hospital for Children between 2014-2020 were identified. Attendance data was obtained from patient records and an electronic appointment system. Success of transition in OI was determined by the proportion of young people in established follow-up, defined as those young people still attending an adult clinic 3 years after transfer. Good late attendance was measured as attending ≥50% of offered appointments at the paediatric Complex Bone Clinic in the 3 years prior to transfer. Good early attendance was measured as those attending ≥50% of offered appointments at any adult bone clinic in the 3 years following transfer.

Results: 23 young people (median age 17.5yrs) were identified who had care transferred to an adult service between 2014-2020. 10 (43.5%) of which were in established follow-up at 3 years. 16 (66.7%) young people were offered an initial appointment at an adult service. 18 (78.3%) young people were good late attenders. 12 (52.2%) young people were good early attenders. Good late attenders were significantly more likely to be offered an initial appointment with an adult service (P = 0.017). Those offered an initial appointment for an adult service were significantly more likely to be in established follow-up at 3 years than those not (P = 0.007). Good early attendance did not have a significant impact on established follow-up (P = 0.118).

Conclusion: A significant proportion of patients with OI are currently lost to follow-up following transfer to adult clinics. Good late attendance to paediatric clinic has a significant impact on the likelihood of being offered an initial appointment with an adult service, which appears to predict established long-term follow-up. Strategies to improve attendance pre-transition, and long-term, are required to ensure lifelong health needs are addressed.