Evidence map›Paper›PMID 31149017›Full record

ArticleInternational journal of pediatric endocrinology2019

Disorders of sex development (DSD) web-based information: quality survey of DSD team websites.

Michelle M Ernst, Diane Chen, Kim Kennedy, Tess Jewell, Afiya Sajwani, Carmel Foley, David E Sandberg, DSD-TRN Psychosocial Workgroup and Accord Alliance

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in International journal of pediatric endocrinology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
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

5 citing papers in PubMed.

  1. Article
  2. Review
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  5. Article
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

8 authors.

Michelle M Ernst1Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio 45229 USA.ORCID 0000-0002-0539-8420
Diane Chen3Pritzker Department of Psychiatry and Behavioral Sciences, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave., Box 161B, Chicago, IL 60611 USA.
Kim Kennedy2Disorders of Sex Development Center, Cincinnati Children's Hospital Medical Center, 3333 Burnet Ave., ML 3015, Cincinnati, OH 45229 USA.
Tess Jewell6Oberlin College, 173 W. Lorain St., Oberlin, OH 44074 USA.
Afiya Sajwani4Potocsnak Family Division of Adolescent and Young Adult Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, 225 E. Chicago Ave., Box 161B, Chicago, IL 60611 USA.
Carmel Foley7Hofstra Northwell School of Medicine, 420 Lakeville Rd, Suite 110, New Hyde Park, NY 11042 USA.
David E Sandberg8Department of Pediatrics and Susan B Meister Child Health Evaluation and Research (CHEAR) Center, University of Michigan Medical School, 300 North Ingalls St., Rm 6C23, Ann Arbor, MI 48109 USA.
DSD-TRN Psychosocial Workgroup and Accord Alliance

Funding

Disorders of Sex Development: Platform for Basic and Translational ResearchR01HD068138 · NICHD · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI SANDBERG, DAVID ERIC, VILAIN, ERIC J. · 2011 to 2015
$4.0M
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
NICHD NIH HHS R01 HD068138NICHD NIH HHS R01 HD093450
6 · The paper itself

Abstract

objectivesConsumers rely on online health information, particularly for unusual conditions. Disorders of Sex Development (DSD) are complex with some aspects of care controversial. Accurate web-based DSD information is essential for decision-making, but the quality has not been rigorously evaluated. The purpose of the present study was to assess the quality of online health information related to DSD presented by 12 pediatric institutions comprising the NIH-sponsored DSD-Translational Research Network (DSD-TRN).

methodsDSD-TRN sites identified team webpages, then we identified linked webpages. We also used each institution search engine to search common DSD terms. We assessed webpages using validated tools: the Simple Measure of Gobbledygook (SMOG) determined reading level, the Patient Education Materials Assessment Tool (PEMAT) evaluated content for understandability and actionability, and the DISCERN tool assessed treatment decision-making information (for hormone replacement and surgery). We developed a "Completeness" measure which assessed the presence of information on 25 DSD topics.

resultsThe SMOG reading level of webpages was at or above high-school grade level. Mean (SD) PEMAT understandability score for Team Pages and Team Links was 68% (6%); on average these pages met less than 70% of the understandability criteria. Mean (SD) PEMAT actionability score was 23% (20%); few patient actions were identified. The DISCERN tool determined that the quality of information related to hormone treatment and to surgery was poor. Sites' webpages covered 12-56% of the items on our Completeness measure.

conclusionsQuality of DSD online content was poor, and would be improved by using a variety of strategies, such as simplifying word choice, using visual aids, highlighting actions patients can take and acknowledging areas of uncertainty. For complex conditions such as DSD, high-quality web-based information is essential to empower patients (and caregiver proxies), particularly when aspects of care are controversial.

Indexed as

Disorder of sex developmentHealth literacyInternet health information

Identifiers

PMID31149017
PMCPMC6537388

What OpenQuestion holds

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LicenceCC BY
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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.