Introduction: Children and young people with Turner Syndrome have regular follow up with a paediatric multidisciplinary team to monitor growth, puberty and cardiac comorbidities. As these young women transition to adult care, they need ongoing follow-up for surveillance of potential morbidity and reproductive issues. Following publication of the International Turner Syndrome Consensus Group guidelines on transitional care, a review of current clinical practice in our tertiary centre was undertaken.
Method: Young women who had previously transitioned to adult services were identified through clinical databases in a tertiary paediatric centre. Data was collected on transition pathways such as attendance at joint clinics, cardiac investigation, BMI and blood pressure measurements and continuing adult specialist care. These clinical parameters were chosen in keeping with the consensus guidelines. It was anticipated that some women would transition to local clinics and adherence to the guidelines was explored. Full institutional audit approval was granted.
Result: 16 women transitioned to adult care. 5 continued in the trust whilst 11 were followed up by regional adult teams. The 5 who remained within the trust were transitioned to an adult Turner clinic. 80% attended a joint transition clinic that included a paediatric endocrinologist and gynaecologist. An adult endocrinologist was present in 60% of clinics. All women underwent a cardiac investigation around the time of transition and were followed up in an adult clinic. 80% of women had height, weight, body mass index and blood pressure measured at the time of transition. The 11 women who transitioned to six regional clinics were managed through a variety of clinical pathways, one of which involved a specific adult Turner clinic.
Conclusion: This audit has mapped the various pathways of care for young women with Turner Syndrome within the region. It describes the points of care, particularly cardiac investigation, which are being delivered, either through a tertiary centre or locally. A patient-held information document and checklist of required follow-up are under development to help ensure that adherence to the transition consensus guidelines is maintained.
07 Nov 2018 - 09 Nov 2018