TY - JOUR
T1 - Assessing the health-related management of people with differences of sex development
AU - Jürgensen, Martina
AU - Rapp, Marion
AU - Döhnert, Ulla
AU - Frielitz, Fabian Simon
AU - Ahmed, Faisal
AU - Cools, Martine
AU - Thyen, Ute
AU - Hiort, Olaf
N1 - Publisher Copyright:
© 2021, The Author(s).
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/3
Y1 - 2021/3
N2 - Purpose: Health care requirements and perception of people with differences of sex development (DSD) have changed enormously since the “Chicago Consensus Conference” in 2005. Therefore, new standards of care and evaluation of care have to be developed. Methods: We summarize the social and legal approach to care for DSD during the last two decades and report the main results of European research activities. Results: The last two decades were accompanied by legal and societal discussion regarding how to deal with a nonbinary concept of sex. This leads to the necessity to assess health care requirements for individuals with DSD in an objective manner. We briefly review the results of the recently funded European research projects dealing with health-related issues in DSD like EU COST Action DSD, I-DSD, and dsd-LIFE, and address the compilation of quality indicators that will be needed to benchmark health care provision and health care-related outcomes. Conclusions: The benchmarking process has to be implemented among health care providers for individuals with DSD within the European Reference Networks for Rare Conditions.
AB - Purpose: Health care requirements and perception of people with differences of sex development (DSD) have changed enormously since the “Chicago Consensus Conference” in 2005. Therefore, new standards of care and evaluation of care have to be developed. Methods: We summarize the social and legal approach to care for DSD during the last two decades and report the main results of European research activities. Results: The last two decades were accompanied by legal and societal discussion regarding how to deal with a nonbinary concept of sex. This leads to the necessity to assess health care requirements for individuals with DSD in an objective manner. We briefly review the results of the recently funded European research projects dealing with health-related issues in DSD like EU COST Action DSD, I-DSD, and dsd-LIFE, and address the compilation of quality indicators that will be needed to benchmark health care provision and health care-related outcomes. Conclusions: The benchmarking process has to be implemented among health care providers for individuals with DSD within the European Reference Networks for Rare Conditions.
UR - http://www.scopus.com/inward/record.url?scp=85100053621&partnerID=8YFLogxK
UR - https://www.mendeley.com/catalogue/ea733ff4-20c7-3c40-ab76-f75602303967/
U2 - 10.1007/s12020-021-02627-y
DO - 10.1007/s12020-021-02627-y
M3 - Journal articles
C2 - 33515437
AN - SCOPUS:85100053621
SN - 1355-008X
VL - 71
SP - 675
EP - 680
JO - Endocrine
JF - Endocrine
IS - 3
ER -
