Evidence map›Paper›PMID 33712989›Full record

ArticleArchives of sexual behavior2021

Early Genital Surgery in Disorders/Differences of Sex Development: Patients' Perspectives.

Elena Bennecke, Stephanie Bernstein, Peter Lee, Tim C van de Grift, Agneta Nordenskjöld, Marion Rapp, Margaret Simmonds, Jürg C Streuli, Ute Thyen, Claudia Wiesemann and 1 more

Open access · hybridAbstract read
In one paragraph

Article in Archives of sexual behavior, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
23citing papers in PubMed, 1 pooled it
4.1field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

23 citing papers in PubMed, 1 synthesis or guideline pooled it, 63 citations in OpenAlex.

  1. Guideline
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  5. Clinical practice guidelines for the management of differences of sex development in Japan.Clinical pediatric endocrinology : case reports and clinical investigations : official journal of the Japanese Society for Pediatric Endocrinology · 2026
    Review
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  16. Observational
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors at 7 institutions in 5 countries.

Elena BenneckeDepartment of Paediatric Endocrinology and Diabetology, Charité-Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, Humboldt-Universität zu Berlin, and Berlin Institute of Health, Berlin, Germany.
Stephanie BernsteinDepartment of Paediatrics, Göttingen University Medical Center, Göttingen, Germany.
Peter LeeDepartment of Pediatrics, Penn State College of Medicine, Hershey, PA, USA.
Tim C van de GriftDepartment of Plastic, Reconstructive and Hand Surgery, Amsterdam University Medical Center (VUmc), Amsterdam, The Netherlands.
Agneta NordenskjöldPediatric Surgery, Karolinska University Hospital and Department of Women's and Children's Health, and Center of Molecular Medicine, Karolinska Institutet, Stockholm, Sweden.
Marion RappKlinik für Kinder- und Jugendmedizin, Universität zu Lubeck, Lubeck, Germany.
Margaret SimmondsAndrogen Insensitivity Syndrome Support Group, London, UK.
Jürg C StreuliInstitute of Biomedical Ethics and History of Medicine, University of Zurich, Zürich, Switzerland.
Ute ThyenKlinik für Kinder- und Jugendmedizin, Universität zu Lubeck, Lubeck, Germany.
Claudia WiesemannDepartment of Medical Ethics and History of Medicine, Göttingen University Medical Center, Humboldtallee 36, 37073, Göttingen, Germany. cwiesem@gwdg.de.ORCID http://orcid.org/0000-0002-8260-0346
dsd-LIFE Group
Universitätsmedizin Göttingen · DEUniversity of Lübeck · DEAmsterdam University Medical Centers · NLHumboldt-Universität zu Berlin · DEKarolinska University Hospital · SEPenn State Milton S. Hershey Medical Center · USUniversity of Zurich · CH

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Controversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072.

Indexed as

Disorders of Sex DevelopmentAdolescentAdultCross-Sectional StudiesEuropeFemaleGenitaliaHumansMaleSurveys and QuestionnairesUrogenital Surgical ProceduresYoung AdultCongenital adrenal hyperplasiaDisorders of sex developmentEthicsGenital surgeryPediatrics

Identifiers

PMID33712989
PMCPMC8035116
OpenAlexW3135583751

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.