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Quality of Life Determinants in Young Women with Turner’s Syndrome after Growth Hormone Treatment: Results of the StaTur Population-Based Cohort Study

Department of Pediatric Endocrinology and Institut National de la Santé et de la Recherche Médicale Unité 561 (J.-C.C., J.-L.C., I.B.-S.) and Department of Biostatistics (E.E., J.C.), Groupe Hospitalier Cochin-Saint Vincent de Paul and Faculté de Médecine René Descartes Paris 5, 75674 Paris, France; Department of Pediatric Endocrinology (S.C.), Hôpital Armand Trousseau, 75571 Paris, France; Department of Pediatric Endocrinology (M.T.), Hôpital des Enfants, 31059 Toulouse, France; Department of Pediatric Endocrinology (J.L.), Hôpital Robert Debré, 75935 Paris, France; Department of Pediatric Endocrinology (M.N.), Hôpital Debrousse, 69322 Lyon, France; and Department of Pediatric Endocrinology (R.B.), Hôpital de Bicêtre, 94275 Le Kremlin Bicêtre, France

Address all correspondence and requests for reprints to: Professor Jean-Claude Carel, Pediatric Endocrinology and Institut National de la Santé et de la Recherche Médicale Unité 561, Groupe Hospitalier Cochin-Saint Vincent de Paul, 82 av Denfert Rochereau, 75014 Paris, France. E-mail: carel{at}paris5.inserm.fr.

GH is used to increase adult height in children with Turner’s syndrome with little knowledge of the impact on quality of life. We carried out a population-based cohort study of quality-of-life determinants in young women with Turner’s syndrome, all previously treated with GH. Of 891 eligible women aged over 18 yr and recorded in the French Growth Hormone Register, 818 were available and 568 participated (69%). They were assessed for demographic characteristics, health status, sexual life, treatment expectations, scores for Medical Outcome Study Short Form 36 (SF-36), and General Health Questionnaire 12. Participants were 22.6 ± 2.6 yr old (mean ± SD), measured 150.9 ± 5.6 cm, and had received GH for 4.8 ± 2.2 yr. SF-36 scores were similar in participants and French women of the general population. Cardiac (12% of participants) or otological (26% of participants) involvement or induction of puberty after 15 yr of age was associated with lower scores for at least one of the SF-36 dimensions. Height and estimated height gain from treatment were not associated with quality-of-life scores. Higher expectations from treatment were associated with lower quality of life. We conclude that quality of life is normal and unaffected by height in young adults with Turner’s syndrome treated with GH. These data emphasize the need to give appropriate attention to general health and otological care rather than focus on stature in the care of children with Turner’s syndrome.

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