Jolanta Słowikowska-Hilczer1, Angelica Lindén Hirschberg2, Hedi Claahsen-van der Grinten3, Nicole Reisch4, Claire Bouvattier5, Ute Thyen6, Peggy Cohen Kettenis7, Robert Roehle8, Birgit Köhler9, Anna Nordenström10. 1. Department of Andrology and Reproductive Endocrinology, Medical University of Lodz, Lodz, Poland. 2. Department of Gynecology, Karolinska University Hospital, Stockholm, Sweden; Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden. 3. Department of Pediatric Endocrinology, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands. 4. Medizinische Klinik and Poliklinik IV, Department of Endocrinology, University Hospital Munich, Munich, Germany. 5. Service d'Endocrinologie, Groupement Hospitalier Est, Centre Hospitalo-Universitaire de Lyon, Bron Cedex, France; Fac Med Paris-Sud, Université Paris-Sud, Université Paris Saclay, Le Kremlin Bicêtre, France; Département d'Endocrinologie Pédiatrique, Hôpital de Bicêtre, Hôpitaux Universitaires Paris Sud, Assistance Publique-Hôpitaux de Paris, Le Kremlin Bicêtre, France; Centre de référence des maladies rares du développement sexuel, Le Kremlin Bicêtre, France. 6. Klinik fur Kinder-und Jugendmedizin, Universitat zu Lubeck, Lubeck, Germany. 7. Department of Medical Psychology, VU Medisch Centrum, Amsterdam, the Netherlands. 8. Charite, Campus Virchow-Klinikum, Koordinierungszentrum fur Klinische Studien (KKS Charite), Berlin, Germany. 9. Klinik für Pädiatrische Endokrinologie und Diabetologie, Charité-Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany. 10. Department of Women's and Children's Health, Karolinska Institutet, Karolinska University Hospital, Stockholm, Sweden; Department of Paediatric Endocrinology, Astrid Lindgren Children's Hospital, Karolinska University Hospital, Stockholm, Sweden. Electronic address: anna.nordenstrom@ki.se.
Abstract
OBJECTIVE: To investigate fertility outcome in individuals with different forms of disorders of sex development (DSD), if assisted reproductive technology (ART) was used, and the patients' satisfaction with the information they had received. DESIGN: A cross-sectional multicenter study, dsd-LIFE. SETTING: Not applicable. PATIENT(S): A total of 1,040 patients aged ≥16 years with different DSD diagnoses participated. INTERVENTION(S): A web-based questionnaire was filled out by all participants. The participants could chose to take part in somatic investigations including ultrasonography. MAIN OUTCOME MEASURE(S): Information on partner, number of children, ART, adoption and step-children, general health, presence of gonads and uterus, current education and economic situation, received information on fertility issues, and satisfaction with the information, was collected. RESULT(S): In the total cohort, mean age 32 years, 33% lived with a partner, but only 14% reported having at least one child including 7% with ART, 4% adopted. Only 3.5% of the total cohort had been able to reproduce without ART, most frequently women with congenital adrenal hyperplasia, and only 0.7% of participants with other diagnoses. Of the participants, 72% had received information on fertility, but 17% were not satisfied with the information. CONCLUSION(S): Fertility outcome is significantly reduced in all types of DSD; however, fertility potential should be assessed individually. The satisfaction with how fertility problems have been discussed can be improved. The care of patients with DSD is complex, should be individualized, and new treatment possibilities incorporated. A close collaboration in multidisciplinary teams is therefore essential to improve the situation for individuals with DSD.
OBJECTIVE: To investigate fertility outcome in individuals with different forms of disorders of sex development (DSD), if assisted reproductive technology (ART) was used, and the patients' satisfaction with the information they had received. DESIGN: A cross-sectional multicenter study, dsd-LIFE. SETTING: Not applicable. PATIENT(S): A total of 1,040 patients aged ≥16 years with different DSD diagnoses participated. INTERVENTION(S): A web-based questionnaire was filled out by all participants. The participants could chose to take part in somatic investigations including ultrasonography. MAIN OUTCOME MEASURE(S): Information on partner, number of children, ART, adoption and step-children, general health, presence of gonads and uterus, current education and economic situation, received information on fertility issues, and satisfaction with the information, was collected. RESULT(S): In the total cohort, mean age 32 years, 33% lived with a partner, but only 14% reported having at least one child including 7% with ART, 4% adopted. Only 3.5% of the total cohort had been able to reproduce without ART, most frequently women with congenital adrenal hyperplasia, and only 0.7% of participants with other diagnoses. Of the participants, 72% had received information on fertility, but 17% were not satisfied with the information. CONCLUSION(S): Fertility outcome is significantly reduced in all types of DSD; however, fertility potential should be assessed individually. The satisfaction with how fertility problems have been discussed can be improved. The care of patients with DSD is complex, should be individualized, and new treatment possibilities incorporated. A close collaboration in multidisciplinary teams is therefore essential to improve the situation for individuals with DSD.
Authors: Jaclyn L Papadakis; Jonathan L Poquiz; Cindy L Buchanan; Yee-Ming Chan; Canice E Crerand; Jennifer Hansen-Moore; Hillary M Kapa; Leena Nahata; Keeley J Pratt; Amy C Tishelman; Diane Chen Journal: Clin Pract Pediatr Psychol Date: 2020-12-03
Authors: Hedi L Claahsen-van der Grinten; Phyllis W Speiser; S Faisal Ahmed; Wiebke Arlt; Richard J Auchus; Henrik Falhammar; Christa E Flück; Leonardo Guasti; Angela Huebner; Barbara B M Kortmann; Nils Krone; Deborah P Merke; Walter L Miller; Anna Nordenström; Nicole Reisch; David E Sandberg; Nike M M L Stikkelbroeck; Philippe Touraine; Agustini Utari; Stefan A Wudy; Perrin C White Journal: Endocr Rev Date: 2022-01-12 Impact factor: 19.871
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