Endocrine Abstracts (2004) 7 P188

Follow up of women with Turner's syndrome in an adult endocrine clinic

S Ghosh, NM Hussein, C Gibson, DW Ray, FC Wu & JRE Davis

Department of Endocrinology, Manchester Royal Infirmary, Manchester, UK.

Turner's syndrome is the most commonly occurring chromosomal abnormality in females. Adults with Turner's have a threefold increase in mortality and life expectancy is reduced. Recent recommendations for the follow-up of women with Turner's syndrome include annual checks of thyroid function, serum lipids, blood glucose, liver function, renal function, and 3 to 5 yearly echocardiography, bone densitometry, and audiogram.

We have reviewed actual follow-up management of 26 adult Turner patients over the past 5 years in a single (general) adult endocrine clinic. The mean age of the patients was 26 years (range 17 to 53y), three were older than 35y. 24 patients were on oestrogen replacement, one had discontinued and another had temporarily stopped. Within the last year 75% had their blood pressure checked. Variable proportions of patients had tests carried out within the past one year, though higher proportions had had these tests performed within the previous five years. Blood glucose was measured in 37% (62% within 5 years), thyroid function in 67% (83% in 5 years), lipids in 25% (67%in 5years), renal function in 58% (67%in 5 years), and liver function in 42% (50% in 5 years). Within the last 5 years 76% had had bone densitometry and echocardiogram and / or magnetic resonance imaging of the great vessels and the heart, but only 16% had audiological assessment. Egg donation discussions and / or referrals were documented for 38% women, none had had a pregnancy.

These findings suggest that adult women with Turner's syndrome are not receiving adequate follow-up, despite an intention to maintain regular endocrine review. This suggests that a specialised clinic may be helpful for the follow-up of women with Turner's syndrome; a follow-up protocol enclosed in the case records and a regional computerised register may aid in the management of this condition.

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