Hormone therapy and patient satisfaction with treatment, in a large cohort of diverse disorders of sex development

Nordenstrom, Anna; Röhle, Robert; Thyen, Ute; Bouvattier, Claire; Slowikowska-Hilczer, Jolanta; Reisch, Nicole; Claahsen-van der Grinten, Hedi; Brac de la Perriere, Aude; Cohen-Kettenis, Peggy T. und Köhler, Birgit (2018): Hormone therapy and patient satisfaction with treatment, in a large cohort of diverse disorders of sex development. In: Clinical Endocrinology, Bd. 88, Nr. 3: S. 397-408

Abstract

Objective: 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. DesignMulticentre cross-sectional clinical evaluation, dsd-LIFE in 6 European countries from February 2014 to September 2015. ParticipantsA total of 1040 adolescents and adults (16years) with different DSD conditions. Main outcomes measuresHormone 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). Oestrogenprogestin 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. Conclusion: sMore 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.

• Dokumententyp: Zeitschriftenartikel
• Fakultät: Medizin
• Themengebiete: 600 Technik, Medizin, angewandte Wissenschaften > 610 Medizin und Gesundheit
• ISSN: 0300-0664
• Sprache: Englisch