Evidence map›Paper›PMID 37920724›Full record

ArticleFrontiers in urology2023

Surgical Decision-Making for Individuals with Differences of Sex Development: Stakeholders' views.

Erica M Weidler, Melissa Gardner, Kristina I Suorsa-Johnson, Tara Schafer-Kalkhoff, Meilan M Rutter, David E Sandberg, Kathleen van Leeuwen

Open access · diamondAbstract read
In one paragraph

Article in Frontiers in urology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
1.7field-weighted citation impact, top 16% 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

7 citing papers in PubMed, 11 citations in OpenAlex.

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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

7 authors at 5 institutions in 1 country.

Erica M WeidlerDivision of Pediatric Surgery, Phoenix Children's, Phoenix, Arizona.
Melissa GardnerSusan B. Meister Child Health Evaluation & Research (CHEAR) Center and Division of Pediatric Psychology, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, Michigan, USA.
Kristina I Suorsa-JohnsonDivision of Pediatric Psychology and Behavioral Health, Department of Pediatrics, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, Utah, USA.
Tara Schafer-KalkhoffDivision of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA.
Meilan M RutterAccord Alliance, USA.
David E SandbergAccord Alliance, USA.
Kathleen van LeeuwenDivision of Pediatric Surgery, Phoenix Children's, Phoenix, Arizona.
Phoenix Children's Hospital · USUniversity of Michigan · USCincinnati Children's Hospital Medical Center · USUniversity of Cincinnati Medical Center · USUniversity of Utah · US

Funding

Disorders/Differences of Sex Development (DSD) - Translational Research NetworkR01HD093450 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SANDBERG, DAVID ERIC, VILAIN, ERIC J. · 2018 to 2022
$3.9M
Decision-Making for Patients Born with Differences of Sex Development (DSD)R01HD086583 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SANDBERG, DAVID ERIC · 2016 to 2021
$2.8M
NICHD NIH HHS R01 HD086583NICHD NIH HHS R01 HD093450
6 · The paper itself

Abstract

Introduction: Advocacy and human rights organizations have called for a moratorium on elective surgical procedures until the patient is able to fully participate in the decision-making process. Due to the controversial nature surrounding surgery in differences of sex development (DSD) care, we aimed to assess the factors that teens and adults with DSD, parents, healthcare providers and other allied professionals consider pertinent to complex surgical decisions in DSD. Methods: Stakeholders (n=110) in DSD care participated in semi-structured interviews exploring features and potential determinants of successful healthcare outcomes. Audio-recordings were transcribed, coded, and analyzed using qualitative data software. Codes for "Process of Decision-Making" and "Successful Outcome-Surgery/Appearance/Function" were further searched using keywords "surgery," "procedure," and "timing." Results: Several themes were identified: 1) The nature or type of the decision being made; 2) Who should be involved in the decision-making process; 3) Timing of conversations about surgery; 4) Barriers to decision-making surrounding surgery; 5) The elements of surgical decision-making; and 6) The optimal approach to surgical decision-making. Many stakeholders believed children and adolescents with DSD should be involved in the process as developmentally appropriate. Conclusion: DSD include a wide range of diagnoses, some of which may require urogenital reconstruction to relieve obstruction, achieve continence, and/or address other anatomical differences whether cosmetic or functional. Adolescents and adults with DSD desired autonomy and to be part of the decision-making process. Parents were divided in their opinion of who should be involved in making elective surgical decisions: the child or parents as proxy medical decision-makers. Providers and other professionals stressed the importance of process and education around surgical decisions. Ongoing research examines how decision-makers evaluate tradeoffs associated with decision options.

Indexed as

decision aidsDifferences of sex developmentdisorders of sex developmentgenital surgerygonadal surgeryintersexproxy decision-makingshared decision-making

Identifiers

PMID37920724
PMCPMC10621752
OpenAlexW4321788610

What OpenQuestion holds

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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.