ESPEYB18 6. Differences of Sexual Development (DSD) and Gender Dysphoria (GD) Patient Related Outcomes (4 abstracts)
6.9. Early Genital Surgery in Disorders/Differences of Sex Development: Patients' Perspectives
Bennecke E , Bernstein S , Lee P , van de Grift TC , Nordenskjöld A , Rapp M , Simmonds M , Streuli JC , Thyen U & Wiesemann C; dsd-LIFE Group
Arch Sex Behav. 2021 Apr;50(3):913–923. doi: 10.1007/s10508-021-01953-6. PMID: 33712989
This paper describes a patient cohort study of 459 individuals with various DSD diagnoses, as part of the dsd-LIFE study. Patients were included at 14 different sites in 6 European countries.
Genital surgery has been increasingly questioned in the past decade. Both the timing and age at first surgery have been debated, due to less than satisfactory outcomes reported historically but also from a human rights perspective. Patient advocacy groups have demanded a moratorium on early surgery. United Nations and European Union commissions have made statements related to this issue from the perspective of the (age-related) possibility to obtain informed consent.
In this study, patients were asked about their own opinion concerning early genital surgery both from their personal perspective and from a general perspective, i.e. if they thought it would be best to postpone genital surgery to an age when the individual can participate in the decision on genital surgery. Studies that ask patients about their personal experiences of procedures they have undergone are prone to bias, as many individuals are positively inclined towards their own experiences. This is part of an individual’s coping strategy and is generally good, but it does hamper the interpretation of qualitative studies. These authors are aware of this issue and they address it specifically.
This paper illustrates and discusses the complexity of the questions concerning surgery of the genitalia, including the ethical and human rights aspects. Data are presented on surgery, vaginoplasty and clitoris reduction, in girls with CAH and other diagnoses with 46,XY karyotype and androgen effects. The patients’ opinions on timing of hypospadias surgery in boys/men, a topic which has attracted considerably less attention, is addressed as well.
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ESPE Yearbook of Paediatric Endocrinology
ISSN 1662-4009 (Online)
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