Quality of Life in Women with Turner Syndrome after Pediatric Growth Hormone Therapy

Background: Short stature is the most common feature of Turner Syndrome (TS). Growth hormone (GH) therapy in TS has shown to improve final height. The effect of improving the quality of life (QOL) by improving the final height on short children in general and girls with TS in particular has been controversial. Women with TS may have other TS related comorbidities that may affect their QOL.

Objectives:

1. To determine whether use of GH therapy in TS women affected the QOL
2. To determine if improvement in QOL scores (post treatment) are due to increased height or change in social behavior, increased education or other factors.

Method: 400 surveys were mailed out to members of TS Society in the USA. The survey included questions about history of GH therapy, height, income, education, marital status and quality of life index developed by Ferrans and Powers to evaluate:

1-Health and functioning

2-Social and economics

3-Psychological and spiritual life

4-Family status

Results:

- 174 (43.5%) surveys were returned.

- 48 (27.6%) were GH treated while 126 (72.4%) were untreated.

- No difference in QOL between the treated versus non-treated groups .

- Overall satisfaction was not significantly different before and after GH treatment.

- Some observational outcomes of well-being were related to physical strength, appearance, ability to make friends and obtaining a higher income.

Conclusion: Several studies about children treated with GH have shown no significant improvement in QOL. This study involving 48 TS women has led to the same conclusion. Improving final height in TS girls allows them to attain better functioning in daily activities. The GH treated group was younger than the non-treated group reflecting the natural history of GH use in TS. Future studies are warranted to help understand the effect of GH- related height gain on QOL by reevaluating different generations of TS women.