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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, 2017-11, Vol.108 (5), p.822-831 [Peer Reviewed Journal]

2017 American Society for Reproductive Medicine ;Copyright © 2017 American Society for Reproductive Medicine. Published by Elsevier Inc. All rights reserved. ;Distributed under a Creative Commons Attribution 4.0 International License ;ISSN: 0015-0282 ;ISSN: 1556-5653 ;EISSN: 1556-5653 ;DOI: 10.1016/j.fertnstert.2017.08.013 ;PMID: 28923284

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Title:
Fertility outcome and information on fertility issues in individuals with different forms of disorders of sex development: findings from the dsd-LIFE study
Author: Słowikowska-Hilczer, Jolanta ; Hirschberg, Angelica Lindén ; Claahsen-van der Grinten, Hedi ; Reisch, Nicole ; Bouvattier, Claire ; Thyen, Ute ; Cohen Kettenis, Peggy ; Roehle, Robert ; Köhler, Birgit ; Nordenström, Anna ; Kohler, Birgit ; Cohen-Kettenis, Peggy ; de Vries, Annelou ; Arlt, Wiebke ; Wiesemann, Claudia ; Slowikowska-Hilczer, Jolanta ; de la Perriere, Aude Brac ; Sultan, Charles ; Paris, Francoise ; Bouvattier, Claire ; Thyen, Ute ; Reisch, Nicole ; Richter-Unruh, Annette ; Claahsen-van der Grinten, Hedi ; Nordenstrom, Anna ; Pienkowski, Catherine ; Szarras-Czapnik, Maria
Subjects: Access to Information ; Adolescent ; Adoption ; Adult ; Aged ; Cancer ; Cross-Sectional Studies ; disorders of sex development ; Disorders of Sex Development - complications ; Disorders of Sex Development - diagnosis ; Disorders of Sex Development - genetics ; Disorders of Sex Development - physiopathology ; DSD ; Europe ; Female ; Fertility ; Genetic Predisposition to Disease ; Health Knowledge, Attitudes, Practice ; Humans ; Infertility, Female - diagnosis ; Infertility, Female - etiology ; Infertility, Female - physiopathology ; Infertility, Female - therapy ; Infertility, Male - diagnosis ; Infertility, Male - etiology ; Infertility, Male - physiopathology ; Infertility, Male - therapy ; Life Sciences ; Male ; Medicin och hälsovetenskap ; Middle Aged ; Parents ; Patient Education as Topic ; patient information ; Patient Satisfaction ; patient views ; Phenotype ; Pregnancy ; Reproductive Biology ; Reproductive Health ; Reproductive Techniques, Assisted ; Surveys and Questionnaires ; Young Adult
Is Part Of: Fertility and sterility, 2017-11, Vol.108 (5), p.822-831
Description: 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. A cross-sectional multicenter study, dsd-LIFE. Not applicable. A total of 1,040 patients aged ≥16 years with different DSD diagnoses participated. A web-based questionnaire was filled out by all participants. The participants could chose to take part in somatic investigations including ultrasonography. 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. 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. 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.
Publisher: United States: Elsevier Inc
Language: English
Identifier: ISSN: 0015-0282
ISSN: 1556-5653
EISSN: 1556-5653
DOI: 10.1016/j.fertnstert.2017.08.013
PMID: 28923284
Source: MEDLINE
Alma/SFX Local Collection
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Fertility outcome and information on fertility issues in individuals with different forms of disorders of sex development: findings from the dsd-LIFE study

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