Fertility outcome and information on fertility issues in individuals with different forms of disorders of sex development: findings from the dsd-LIFE study
| Autor: | Jolanta Słowikowska-Hilczer, Angelica Lindén Hirschberg, Hedi Claahsen-van der Grinten, Nicole Reisch, Claire Bouvattier, Ute Thyen, Peggy Cohen Kettenis, Robert Roehle, Birgit Köhler, Anna Nordenström, Birgit Kohler, Peggy Cohen-Kettenis, Annelou de Vries, Wiebke Arlt, Claudia Wiesemann, Jolanta Slowikowska-Hilczer, Aude Brac de la Perriere, Charles Sultan, Francoise Paris, Annette Richter-Unruh, Anna Nordenstrom, Catherine Pienkowski, Maria Szarras-Czapnik |
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| Přispěvatelé: | Medical psychology, Pediatric surgery, APH - Mental Health, APH - Quality of Care, Department of Andrology and Reproductive Endocrinology [Medical University of Łódź], Medical University of Łódź (MUL), Karolinska Institute, Stockholm University, Koordinierungszentrum für klinische Studien MUW, Humboldt-Universität zu Berlin, Department of Women's and Children's Health, Karolinska Institutet [Stockholm]-Karolinska University Hospital [Stockholm], VU medisch centrum, Department of Reproductive Endocrinology, Centre Hospitalier Régional Universitaire [Montpellier] (CHRU Montpellier), Institut de recherche en cancérologie de Montpellier (IRCM - U896 Inserm - UM1), Université Montpellier 1 (UM1)-CRLCC Val d'Aurelle - Paul Lamarque-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Montpellier (UM), Service d'endocrinologie pédiatrique [CHU Bicêtre], Université Paris-Sud - Paris 11 (UP11)-Assistance publique - Hôpitaux de Paris (AP-HP) (AP-HP), Radboud University Medical Center [Nijmegen] |
| Rok vydání: | 2017 |
| Předmět: |
Male
Parents Health Knowledge Attitudes Practice medicine.medical_treatment Disorders of Sex Development DSD Outcome (game theory) 0302 clinical medicine Pregnancy Surveys and Questionnaires Disorders of sex development Medical diagnosis media_common 030219 obstetrics & reproductive medicine Obstetrics and Gynecology Vascular damage Radboud Institute for Molecular Life Sciences [Radboudumc 16] Middle Aged 3. Good health Europe Phenotype Reproductive Health Patient Satisfaction Cohort Female Infertility Female Adult medicine.medical_specialty Adolescent Reproductive Techniques Assisted media_common.quotation_subject [SDV.CAN]Life Sciences [q-bio]/Cancer 030209 endocrinology & metabolism Fertility MESH: Access to Information Access to Information 03 medical and health sciences Young Adult All institutes and research themes of the Radboud University Medical Center Patient Education as Topic Intervention (counseling) Adoption medicine Humans Congenital adrenal hyperplasia Genetic Predisposition to Disease Infertility Male Aged Gynecology Assisted reproductive technology business.industry [SDV.BDLR]Life Sciences [q-bio]/Reproductive Biology patient views medicine.disease patient information Cross-Sectional Studies Reproductive Medicine Family medicine business |
| Zdroj: | Fertility and Sterility, 108, 5, pp. 822-831 Fertility and Sterility, 108(5), 822-831. Elsevier Inc. Fertility and Sterility, 108, 822-831 Fertility and Sterility Fertility and Sterility, Elsevier, 2017, 108 (5), pp.822-831. ⟨10.1016/j.fertnstert.2017.08.013⟩ Słowikowska-Hilczer, J, Hirschberg, A L, Claahsen-van der Grinten, H, Reisch, N, Bouvattier, C, Thyen, U, Cohen-Kettenis, P, Roehle, R, Köhler, B, Nordenström, A, Kohler, B, Nordenstrom, A, dsd-LIFE Group & dsd-LIFE Group 2017, ' Fertility outcome and information on fertility issues in individuals with different forms of disorders of sex development : findings from the dsd-LIFE study ', Fertility and Sterility, vol. 108, no. 5, pp. 822-831 . https://doi.org/10.1016/j.fertnstert.2017.08.013 |
| ISSN: | 0015-0282 |
| DOI: | 10.1016/j.fertnstert.2017.08.013⟩ |
| Popis: | International audience; 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. |
| Databáze: | OpenAIRE |
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