Evidence map›Paper›PMID 36244898›Full record

ArticleJournal of pediatric urology2023

A survey of healthcare professionals' perceptions of the decisional needs of parents with an infant born with a disorder/difference of sex development.

Kristina I Suorsa-Johnson, Melissa D Gardner, William Brinkman, Meg Carley, Larry Gruppen, Noi Liang, Sophie Lightfoot, Kendra Pinkelman, Phyllis W Speiser, Brian VanderBrink and 3 more

Open access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pediatric urology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed, 1 pooled it
2.3field-weighted citation impact, top 12% 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

4 citing papers in PubMed, 1 synthesis or guideline pooled it, 6 citations in OpenAlex.

  1. Guideline
  2. 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
  3. Article
  4. Article
4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

13 authors at 7 institutions in 2 countries.

Kristina I Suorsa-JohnsonDepartment of Pediatrics, Division of Psychiatry and Behavioral Health, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, UT, USA.
Melissa D GardnerSusan B. Meister Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, MI, USA.
William BrinkmanDivision of General and Community Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA; Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
Meg CarleyOttawa Hospital Research Institute, Ottawa, ON, Canada.
Larry GruppenDepartment of Learning Health Sciences, University of Michigan Medical School, Ann Arbor, MI, USA.
Noi LiangPatient/parent/caregiver-partners.
Sophie LightfootSchool of Nursing, University of Ottawa, Ottawa, ON, Canada.
Kendra PinkelmanPatient/parent/caregiver-partners.
Phyllis W SpeiserDonald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA; Feinstein Institute for Medical Research, Manhasset, NY, USA.
Brian VanderBrinkDivision of Urology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
Jessica WisniewskiPatient/parent/caregiver-partners.
David E SandbergSusan B. Meister Child Health Evaluation & Research (CHEAR) Center, University of Michigan, Ann Arbor, MI, USA; Department of Pediatrics, Division of Pediatric Psychology, University of Michigan Medical School, Ann Arbor, MI, USA.
Dawn StaceyOttawa Hospital Research Institute, Ottawa, ON, Canada; School of Nursing, University of Ottawa, Ottawa, ON, Canada. Electronic address: dstacey@uottawa.ca.
Partners In Care · USUniversity of Michigan · USCincinnati Children's Hospital Medical Center · USUniversity of Ottawa · CAFeinstein Institute for Medical Research · USOttawa Hospital · CAUniversity 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

introductionParents of infants born with differences in sex development (DSD) face many difficult decisions. As part of a larger project designed to develop educational interventions to promote shared decision making, this study assessed healthcare professionals' (HCPs) perceptions of parental decision-making needs when an infant is born with a DSD.

methodsA cross-sectional web-based survey following the Ottawa Decision Support Framework was conducted in two waves, between October 2020 and June 2022. Survey domains included: common DSD decisions, indicators of parents' decisional needs, and resources and approaches to support parental decision making. Eligible participants were HCPs working within interprofessional pediatric DSD centers in the USA. Up to three reminders were sent. Descriptive analysis was conducted.

results71 HCPs participated; most (>90%) reported parents experience signs of decisional conflict including feeling unsure, worrying about what could go wrong, and fear of choosing a "wrong," irreversible option. The majority (90%) reported parents experience strong emotions interfering with their receptivity to information or deliberation. The majority (>70%) identified inadequate parental knowledge of the DSD as a barrier to decision making, coupled with information overload (>90%). HCPs rated several factors as "very" important, including: parents having information on benefits, harms, and other features of options (93%), having information about all the available options (87%), and having access to providers to discuss the options (84%). Providers endorsed using a variety of approaches to support parents' decision making; however, access to decision aids was not universally rated as highly important (very, 44%; somewhat, 46%; a little, 10%). IMPLICATIONS: Overall, HCPs expressed favorable attitudes toward supporting active parental participation in medical decision making. Opportunities for enhanced support of shared decision making included: a) recognizing and addressing parental emotional distress and informational overload at a time when parents need to consider complex options for their infant or young child; and b) the need for HCPs to encourage values clarification in decision-making encounters with parents.

Indexed as

Decision MakingParentsChildCross-Sectional StudiesDelivery of Health CareHumansInfantSexual DevelopmentDecisional conflictDecisional needs assessmentDifferences of sex developmentDisorders of sex developmentIntersexShared decision-making

Identifiers

PMID36244898
PMCPMC10603597
OpenAlexW4304110178

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.