ESPE Yearbook of Paediatric Endocrinology

To read the full abstract: The Journal of Clinical Endocrinology & Metabolism 2019;104:5073–5083.

On a similar theme to paper 15.12, these authors studied women with Turner syndrome (TS; n =200), age range 16–78 years, between 1995 and 2018 with a focus on the impact of growth hormone (GH) therapy on health-related quality of life (HR-QoL). Despite a mean 5.7 cm increase in expected height, GH therapy was not associated with improved HR-QoL. HR-QoL in TS women was negatively related to older age at reporting, older age at diagnosis, and hearing impairment.

Children with TS have been offered GH therapy for several decades, based on the demonstration of gains in final height in the range of 4–7 cm. TS is not associated with GH deficiency, so the sole objective of GH therapy is to increase final height. However, little has been published on HR-QoL outcomes after GH therapy, particularly in TS. Studies that have made conclusions on GH therapy on HR-QoL in TS are either very small or do so in comparison to women in the general population, but do not compare the GH-treated to untreated women. There was a knowledge gap regarding the long-term effects of GH on HR-QoL in adulthood in TS.

Here, women with TS reported a similar HR-QoL to the reference population, and there was no association between height and HR-QoL in the reference population. This finding is similar to the other smaller studies that have compared GH-treated to untreated women with TS, in which no benefit of GH on HR-QoL was found in younger women.

The authors courageously conclude, ‘our findings call into question whether treating short stature in childhood with such a cumbersome and expensive treatment is justified when the height gain is relatively small. There is also a risk that the treatment contributes to “health care fatigue’ in childhood that may cause the young women on the cusp of transition to adult care to abstain from further monitoring, which may put them at greater risk later in life unnecessarily”. It may be time to reconsider the TS indication for GH therapy.