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Hormone therapy and patient satisfaction with treatment, in a large cohort of diverse disorders of sex development
Author(s) -
Nordenström Anna,
Röhle Robert,
Thyen Ute,
Bouvattier Claire,
SlowikowskaHilczer Jolanta,
Reisch Nicole,
Claahsen van der Grinten Hedi,
Brac de la Perriere Aude,
CohenKettenis Peggy T.,
Köhler Birgit
Publication year - 2018
Publication title -
clinical endocrinology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.055
H-Index - 147
eISSN - 1365-2265
pISSN - 0300-0664
DOI - 10.1111/cen.13518
Subject(s) - medicine , disorders of sex development , testosterone (patch) , hormone replacement therapy (female to male) , cohort , turner syndrome , progestin , sex hormone binding globulin , hormone therapy , hormone , endocrinology , gynecology , pediatrics , androgen , cancer , breast cancer
Summary Objectives To describe and investigate the hormone treatments in individuals with different forms of disorders of sex development (DSD) and the patients’ own views on their treatment. Design Multicentre cross‐sectional clinical evaluation, dsd‐LIFE in 6 European countries from February 2014 to September 2015. Participants A total of 1040 adolescents and adults (≥16 years) with different DSD conditions. Main outcomes measures Hormone replacement, information received and patient satisfaction. Results Included were women with Turner syndrome (301), 46,XX GD (n = 20), and women with 45,X/46XY (n = 24). Individuals with Klinefelter syndrome (n = 218), 46,XX males (n = 6), individuals with different forms of 46,XY DSD (n = 243): 46,XY DSD conditions (n = 222), men with 45,X/46XY (n = 21) 46,XX CAH, (n = 226). Oestrogen ± progestin was used by 306 (81%) individuals, 72 (19%) received ethinylestradiol and 198 had testosterone treatment. The overall adherence was good, with 10% of women with oestrogen and 5% of those on testosterone had stopped the medication despite 20% reporting dissatisfaction with the treatment, mostly because of psychological side effects. Glucocorticoid replacement in patients with CAH was very seldom stopped. More than 75% were satisfied with the information about the treatment, but the satisfaction with information about treatment options and side effects was lower. Conclusions More than 50% in the total cohort had hormone replacement. Although adherence was generally good, this study shows that hormone replacement therapy may be improved. This may be achieved by better individualization of the treatment and by providing specific information to patients regarding both long‐term and short‐term hormonal effects and side effects.