Evidence map›Paper›PMID 24469231›Full record

ArticleEuropean journal of pediatrics2014

Health-related quality of life in children with disorders of sex development (DSD).

Martina Jürgensen, Anke Lux, Sebastian Benedikt Wien, Eva Kleinemeier, Olaf Hiort, Ute Thyen

Abstract read
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In one paragraph

Article in European journal of pediatrics, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 25 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
25citing papers in PubMed, 2 pooled it
2.8field-weighted citation impact, top 9% 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

25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 72 citations in OpenAlex.

  1. Guideline
  2. A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance.International journal of environmental research and public health · 2020
    Pooled it
  3. Trial
  4. Trial
  5. Article
  6. 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
  7. Review
  8. Article
  9. Article
  10. Article
  11. Article
  12. Article
  13. Article
  14. Article
  15. Review
  16. Living with an invisible illness: a qualitative study exploring the lived experiences of female children with congenital adrenal hyperplasia.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020
    Article
  17. Article
  18. Quality of life among adolescents living in residential youth care: do domain-specific self-esteem and psychopathology contribute?Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2017
    Article
  19. Review
  20. 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

6 authors at 3 institutions in 1 country.

Martina JürgensenInstitute of Social Medicine and Epidemiology, University of Lübeck, Lübeck, Germany.
Anke Lux
Sebastian Benedikt Wien
Eva Kleinemeier
Olaf Hiort
Ute Thyen
University of Lübeck · DEUniversity Hospital Bonn · DEUniversity Hospital Magdeburg · DE

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

unlabelledDisorders of sex development (DSD) are rare genetic conditions resulting in atypical development of the sex organs. While some evidence is available on psychosexual outcomes, much less is known about the quality of life in this population, especially in children. Health-related quality of life (HRQOL) is a widely accepted endpoint for assessment and evaluation of interventions and medical care. Within the German DSD Network study, 86 children aged 8-12 years with several subtypes of DSD were recruited from Germany, Austria and Switzerland. Demographic, medical and psychosocial variables were collected through interviews of the attending physicians, the children and the parents. HRQOL was the primary outcome. It was assessed by the KINDL-R Questionnaire [2001]. Psychosexual determinants included gender identity/gender dysphoria, gender role behaviour, the child's knowledge about the condition and number/timing of genital surgery. A significant reduction of HRQOL was reported in children's self-report (p < 0.001), in particular in the area of self-esteem (p < 0.001), physical well-being (p < 0.01) and school functioning (p < 0.05). Girls with congenital adrenal hyperplasia who experienced gender dysphoria reported lower HRQOL scores compared to the study group at large. Atypical gender role behaviour was not associated with HRQOL.

conclusionPsychosocial support of children with DSD and their families appears to be necessary in at least some cases and must be accessible for all patients.

Indexed as

AustraliaChildDisorders of Sex DevelopmentFemaleGender IdentityGermanyHumansMaleParentsQuality of LifeSelf ReportSurveys and QuestionnairesSwitzerland

Identifiers

PMID24469231
OpenAlexW2083661720

What OpenQuestion holds

Textmetadata
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.