Turner syndrome transition clinic in the West of Scotland: a perspective.

A substantial proportion of Turner Syndrome patients transferred to adult endocrine services were lost to long-term follow-up.

• 46 young people transferred to adult endocrine services during the observed 20-year period, 1998–2017.
• 36 had transferred prior to 2015, of whom 16 (44%) are lost to long-term follow-up at 5 years.
• The loss to follow-up represents a major challenge in maintaining lifelong surveillance for this population.

Cardiac imaging surveillance was performed in the majority of patients but was often not carried out at recommended frequencies.

• 41 out of 46 (89%) patients have had cardiac imaging surveillance since transferring.
• Only 30 (73%) of these cardiac imaging studies were carried out at the recommended frequencies.
• 5 out of 46 (11%) patients do not have any documented cardiovascular monitoring.
• All 20 women in established 5-year follow-up have had cardiac imaging.

Blood pressure monitoring was documented in the majority of patients but remained incomplete for the overall cohort.

• 40 out of 46 (86.9%) women have had a documented blood pressure measurement.
• 19 of the 20 women who are in 5-year established follow-up have a documented blood pressure.
• Blood pressure monitoring is essential given the increased risk of hypertension and cardiovascular disease in Turner Syndrome.

A minority of women were on the recommended form of oestradiol-based hormone replacement therapy, with several gaps in HRT management identified.

• 5 (11%) women are not on HRT.
• 2 (4%) remain on oestrogen-only HRT.
• 37 (80.4%) women are on combined HRT, but only 8 (21.6%) of these are on the recommended form of oestradiol.
• 2 (4%) are not on HRT due to normal ovarian function.

The Turner Syndrome transition clinic was established to support successful transfer and long-term follow-up in adult endocrine services over a 20-year period.

• The clinic covered the period 1998–2017.
• A departmental database was used to identify young people whose care had transferred to adult endocrine services.
• Electronic case records were utilised to obtain clinic attendance and clinical information on cardiovascular monitoring and HRT.
• The primary objective was to evaluate success in achieving and maintaining follow-up after transfer to adult services.