Original Article
Quality of Life after Growth Hormone Therapy and Induced Puberty in Women with Turner Syndrome

https://doi.org/10.1016/j.jpeds.2005.08.043Get rights and content

Objective

To evaluate health-related quality of life (HRQoL) in young women with Turner syndrome (TS) after long-term growth hormone (GH) therapy and induced puberty and to analyze whether HRQoL was influenced by auxologic parameters, pubertal development, or subjective parameters.

Study design

The study group comprised 49 women with TS, mean (standard deviation) age 19.6 (±3.0) years, all former participants of 2 GH studies, ≥6 months after GH discontinuation. Puberty was induced by estrogen treatment, at mean age 12.9 (±1.1) years. HRQoL was measured by self-reports of the 2 generic questionnaires, SF36 and TAAQOL. As an additional source of information on HRQoL, we applied parental proxy reports.

Results

HRQoL of the women with TS was normal. Remarkably, the women with TS had higher HRQoL scores on some of the scales, including “social functioning” and “role–emotional.” Satisfaction with height and breast development had a positive influence on several HRQoL scales.

Conclusions

The young women with TS who reached normal height and had age-appropriate pubertal development reported normal HRQoL. The relatively high scores on some of the HRQoL scales can be explained by an estrogen effect or by a possible response shift, indicating a different internal reference in women with TS. We hypothesize that GH and estrogen treatment positively influenced HRQoL in young women with TS.

Section snippets

Subjects

All young women with TS who had participated in 2 earlier GH trials were invited to participate in an HRQoL evaluation. The 2 earlier trials were a dose-response GH trial (DRS) and a frequent-response GH trial (FRS) to investigate the effects of long-term GH therapy, given in different dosages and at varying frequencies (see below). To be eligible, a woman had to have discontinued GH treatment for at least 6 months and to be able to fill in the questionnaires. Forty-nine women agreed to

Results

Table I presents the clinical characteristics of the 49 women with TS who participated in the HRQoL evaluation. The average height of 160.7 (6.5) cm is −1.2 (1.1) SDS lower than the normal Dutch references22 and 2.2 (1.0) SDS higher than North European untreated women with TS.23 The mean age at onset of puberty was 12.9 years, compared with 10.8 years in the normal population.7, 24 The progression through puberty, defined as the time intervals from breast stages B2 to B3, B2 to B4, and B2 to

Additional Data

Of the women with TS, 26% had a low SES level, 34% had an intermediate SES level, and 40% had a high SES level, not significantly different from the SES levels in the normal population (ie, 33% low, 34% intermediate, and 33% high).20

Table IV gives data for subjective measures reported by the TS patients and their parents. Four of the women with TS and 2 of the parents did not return the questionnaire. The 3 patients who were not happy with their height would have liked to be taller. Of the 17

Discussion

The women with TS reported higher HRQoL scores in the domains “social functioning” and “role limitations due to emotional health problems.” This means that women with TS felt less restricted in social contacts and/or daily life due to their physical health or emotional problems than the reference population. The reported results of better HRQoL in social functioning in the women with TS is remarkable; earlier data indicated that women with TS scored significantly lower on social acceptance

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    The growth hormone trial was supported by Novo Nordisk A/S, Bagsvard, Denmark.

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