Evidence map›Paper›PMID 34876378›Full record

ArticleJournal of pediatric urology2022

Defining successful outcomes and preferences for clinical management in differences/disorders of sex development: Protocol overview and a qualitative phenomenological study of stakeholders' perspectives.

Kristina I Suorsa-Johnson, Melissa D Gardner, Alison Baskin, Larry D Gruppen, Angela Rose, Meilan M Rutter, Tara Schafer-Kalkhoff, Dawn Stacey, Kathleen D van Leeuwen, Erica M Weidler and 1 more

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PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pediatric urology, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
0.8field-weighted citation impact, top 28% 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

9 citing papers in PubMed, 13 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

11 authors at 4 institutions in 2 countries.

Kristina I Suorsa-JohnsonDepartment of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
Melissa D GardnerDepartment of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
Alison BaskinDepartment of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA.
Larry D GruppenDepartment of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, USA.
Angela RoseChild Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA.
Meilan M RutterDivision of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, USA; Accord Alliance, USA.
Tara Schafer-KalkhoffDivision of Endocrinology, Cincinnati Children's Hospital Medical Center, Cincinnati, USA.
Dawn StaceyOttawa Hospital Research Institute, University of Ottawa, Ottawa, Canada; School of Nursing, University of Ottawa, Ottawa, Canada.
Kathleen D van LeeuwenDivision of Pediatric Surgery, Phoenix Children's Hospital, Phoenix, USA; Accord Alliance, USA.
Erica M WeidlerDivision of Pediatric Surgery, Phoenix Children's Hospital, Phoenix, USA; Accord Alliance, USA.
David E SandbergDepartment of Pediatrics, University of Michigan Medical School, Division of Pediatric Psychology, Ann Arbor, USA; Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, USA; Accord Alliance, USA. Electronic address: dsandber@med.umich.edu.
University of Michigan · USCincinnati Children's Hospital Medical Center · USPhoenix Children's Hospital · USUniversity of Ottawa · CA

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

introductionUtilizing a qualitative phenomenological design, the Defining Successful Outcomes and Trade-offs study examined stakeholder perspectives regarding optimal healthcare delivery and outcomes for individuals with a difference/disorder of sex development (DSD).

objectiveWe describe study methods and provide an overview of themes and subthemes. STUDY

designInterviews were conducted with individuals with a DSD (n = 24), parents of those with a DSD (n = 19), healthcare providers (n = 37), and others (n = 30). Primary questions regarding clinical management of patients with DSD were: "What is a successful outcome?" and "How do you achieve it?"

resultsThemes included: understanding of DSD diagnosis and self-efficacy in management is necessary but complex; patient and family psychological well-being; support from others versus being stigmatized; affected person experiences physical health and accepts the implications of their condition; complexities in DSD decision making, roles and expectations; and knowledgeable providers and multidisciplinary teams are essential, notwithstanding persisting barriers. Participants recognized competing values potentially forcing trade-offs in decision making. DISCUSSION: Recognition of diverse and sometimes conflicting perspectives regarding optimal pathways of care and outcomes - both within and among those with DSD and their providers -promises to enhance shared decision making.

conclusionDiverse perspectives and perceptions of trade-offs associated with DSD healthcare emphasize the need to tailor care for patients and families.

Indexed as

Disorders of Sex DevelopmentHumansParentsQualitative ResearchSexual DevelopmentDifferences of sex developmentDisorders of sex developmentHealthcareIntersexOutcomesShared decision making

Identifiers

PMID34876378
PMCPMC8983568
OpenAlexW3209661379

What OpenQuestion holds

Textmetadata
LicenceTDM
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.