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Growth
hormone (GH) treatment reliably increases adult height in women with
Turner syndrome (TS). Less clear are the benefits of increased height
on indices of adult quality of life (QOL). Carel and colleagues
assessed clinical predictors of QOL in young adult women with TS
enrolled in France’s national GH-treatment registry.
In
2001, there were 891 women 18 years or older who were eligible for the study (568 completed the
postal questionnaire survey, 250 did not respond, and the remaining
73 were either lost to follow-up, unable to complete the forms
because of low IQ, or were deceased). The mean age at initiation of
GH treatment for respondents and nonrespondents was 12 + 2.5
years. Treatment lasted on average 4.7 years and ended when the girls
were 16.7 + 1.6 years. The questionnaire was completed
approximately 6 years later at age 22.6 + 2.6 years. Mean
adult height was 150.9 + 5.6 cm and 148.2 + 6.7 cm
for respondents and nonrespondents, respectively (P<0.005).
Quality of life (assessed by, the French version of the Medical
Outcome Study Short Form 36 [SF-36], the General Health Questionnaire
12 [GHQ-12]) questions examined demographic characteristics, sexual
history, and expectations of growth benefits from GH.
The
TS group did not differ from population norms (women 18 to 24 yrs) in
their scores on the SF-36, a generic measure of health-related QOL.
Scores on the GHQ-12, a measure of psychological well-being were
lower (ie, better function) in the TS group compared to norms. In
statistical analyses controlling for demographic characteristics,
adult height was not associated with QOL scores. Patients with the
highest expectations for growth-promoting effects of GH reported the
lowest QOL. Otological impairment was reported in 26% of the
participants, and this was associated with poorer scores on multiple
QOL scales. “Induction of puberty after 15 years” was
associated with more negative perceptions of health, which
represented a more circumscribed negative effect than that observed
for hearing problems. Variables not found to be statistically related
to QOL scale scores included karyotype, associated dysmorphic
features, sexual intercourse experience, thyroid dysfunction, or
self-reported visual problems.
Carel
JC, Ecosse E, Bastie-Sigeac I, et al. Quality of life determinants in
young women with Turner's syndrome after growth hormone treatment:
Results of the StaTur population-based cohort study. J Clin
Endocrinol Metab. 2005;90:1991-1997.
Editor’s
Comment: This registry-based
study is the first to examine the health-related QOL of young adult
women with TS who received treatment with GH. Adult height (for 95%
of the sample) ranged from 139 to 161 cm. Although mean adult height
reflected a 6 to 8 cm gain above historical data for French patients,
relative height for the participating portion of this cohort was
still short (—2.2 htSD), and the adult height for nonparticipants was even shorter (—2.7ht
SD). Despite this modest benefit of GH treatment, the authors
emphasize that the QOL of participants was on par with norms for the
general French population. Given that a contemporaneous cohort of
untreated women with TS was not available for comparison, and that
adult height was not associated with scores on QOL measures, the
authors speculate that “a beneficial effect of GH treatment
irrespective of adult height attained cannot be ruled out.” One
might contemplate if the act of visiting a endocrinology clinic at
regular intervals and quite likely of meeting other girls with TS,
has a salutary effect on QOL that is independent of the
growth-promoting medical intervention.
In
examining the association between clinical characteristics and QOL,
otological rather than auxological status predicted QOL. It is
unlikely that the pattern of these associations would change with
more complete participation of the cohort in the survey; there is no
reason to expect that the addition of nonresponders would influence
the correlation between height and QOL indices insofar as there was
adequate range in adult heights among the responders to detect
correlations, if they existed.
A
separate follow-up study of young adult women with TS suggests that
the transition from pediatric to adult medical care is suboptimal,
with a significant minority not receiving regular healthcare and not
continuing with estrogen replacement.1 For these reasons,
multidisciplinary follow-up clinics which facilitate transition in
medical care should be considered for TS, as has been described for
individuals with congenital adrenal hyperplasia.2
David E. Sandberg, PhD
References - (linked to  )
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Verlinde F, Massa G, Lagrou K, et al. Health and psychosocial status of patients with turner syndrome after transition to adulthood: the Belgian experience. Horm Res. 2004;62:161-167.
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Kruse B, Riepe FG, Krone N, et al. Congenital adrenal hyperplasia - how to improve the transition from adolescence to adult life. Exp Clin Endocrinol Diabetes. 2004;112:343-355.
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Current GGH - Vol. 24 No. 1
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