Evidence map›Paper›PMID 40484452›Full record

ArticleArchives of disease in childhood2025

Validation of a parent-reported outcome measure for young boys with a condition affecting sex development (PRO-CSD).

Xanthippi Tseretopoulou, Salma R Ali, Melissa Gardner, Martyn Flett, Boma Lee, Stuart O'Toole, Mairi Steven, David E Sandberg, S Faisal Ahmed

Abstract readValidation Study
PubMed Full text at PMC Publisher
In one paragraph

Article in Archives of disease in childhood, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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1 · What the graph read from it

What it found

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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

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3 · Its place in the literature

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4 · The record

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5 · Who and what money

Authors and funding

9 authors.

Xanthippi TseretopoulouDevelopmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK.ORCID 0000-0002-3608-8695
Salma R AliDevelopmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK.
Melissa GardnerSusan B.Meister Child Health Evaluation and Research (CHEAR) Center, Department of Pediatrics, University of Michigan Medical School, Michigan, Michigan, USA.
Martyn FlettDepartment of Paediatric Surgery and Urology, Royal Hospital for Children, Glasgow, UK.
Boma LeeDepartment of Paediatric Surgery and Urology, Royal Hospital for Children, Glasgow, UK.
Stuart O'TooleDepartment of Paediatric Surgery and Urology, Royal Hospital for Children, Glasgow, UK.
Mairi StevenDepartment of Paediatric Surgery and Urology, Royal Hospital for Children, Glasgow, UK.
David E SandbergSusan B.Meister Child Health Evaluation and Research (CHEAR) Center, Department of Pediatrics, University of Michigan Medical School, Michigan, Michigan, USA.
S Faisal AhmedDevelopmental Endocrinology Research Group, Royal Hospital for Children, University of Glasgow, Glasgow, UK faisal.ahmed@glasgow.ac.uk.ORCID 0000-0003-0689-5549

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
Quality of Life in Intersexuality: A Pediatric Clinical and Research ToolR01HD053637 · NICHD · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI SANDBERG, DAVID ERIC · 2008 to 2010
$1.5M
NICHD NIH HHS R01 HD053637NICHD NIH HHS R01 HD093450
6 · The paper itself

Abstract

objectiveTo validate a short parent-reported outcome (PRO) questionnaire in young boys with conditions affecting sex development (PRO-CSD).

designConsecutive sample cross-sectional study.

settingA single tertiary children's hospital in Glasgow, UK. PATIENTS: A total number of 98 parents of 98 affected boys with a median age of 3.1 years (10th, 90th: 0.7, 5.4).

interventionsCompletion of recently developed brief PRO-CSD consisting of a parent proxy-report (PPR) and a parent self-report (PSR). MAIN OUTCOMES: The study assessed test-retest reliability in 41 cases as intraclass correlation coefficients (ICCs) and group construct validity in 98 by exploring associations with seven demographic and clinical features.

resultsThe median ICC for all items was 0.8 (0.6, 0.9). On the PSR, parents of boys with an external masculinisation score (EMS) of less than 7 out of 12 were more concerned about their child's genitalia compared with those with an EMS of greater than 10.5 (p=0.01). An association with EMS was also observed for questions on future social concerns (p<0.01), future relationships (p<0.01) and stress on receiving the diagnosis (p=0.03). This association with EMS was maintained following adjustment for surgical history, parental age and education level. EMS was the only significant independent determinant of the overall PSR score. In the PPR analysis, parents in the lower socioeconomic grouping and those without tertiary education reported more concerns on the physical functioning of their children.

conclusionsThe psychometric properties of the PRO-CSD tool demonstrate its utility for the screening of parent-reported, condition-specific health-related quality of life outcomes in young boys with a CSD.

Indexed as

Disorders of Sex DevelopmentParentsPatient Reported Outcome MeasuresPsychometricsSurveys and QuestionnairesChildChild, PreschoolCross-Sectional StudiesHumansInfantMalePatient Acceptance of Health CareQuality of LifeReproducibility of ResultsUnited KingdomChild HealthEndocrinologyMental healthPaediatricsPsychology

Identifiers

PMID40484452
PMCPMC12404183

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