ArticleHealth and quality of life outcomes2018
Multicentre cross-sectional clinical evaluation study about quality of life in adults with disorders/differences of sex development (DSD) compared to country specific reference populations (dsd-LIFE).
Article in Health and quality of life outcomes, 2018. 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.
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.
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.
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Who cites it
25 citing papers in PubMed, 2 syntheses or guidelines pooled it, 57 citations in OpenAlex.
- A systematic review of core outcomes reported in boys and men with Klinefelter syndrome.Endocrine · 2025Pooled it
- Association between domains of quality of life and patients with Klinefelter syndrome: a systematic review.European journal of endocrinology · 2022Pooled it
- Differences of sex development.Nature reviews. Disease primers · 2025Review
- Islamic Jurisprudence, Biomedical Ethics, and the Social Construct in Relation to Intersex People: A Scoping Review.Archives of sexual behavior · 2025Article
- Development of Quality Indicators to Evaluate the Quality of Care for People with Differences of Sex Development.Hormone research in paediatrics · 2025Article
- Gender identity in Klinefelter Syndrome: a patient-centered approach to treatment.Annals of medicine · 2024Article
- Article
- Prevalence, Morbidity, and Mortality of Men With Sex Chromosome Aneuploidy in the Million Veteran Program Cohort.JAMA network open · 2024Article
- Long-term outcomes in non-CAH 46,XX DSD.Frontiers in endocrinology · 2024Review
- A Single-Center, Observational Study of 607 Children and Young People Presenting With Differences of Sex Development (DSD).Journal of the Endocrine Society · 2022Article
- Body Image and Quality of Life in Women with Congenital Adrenal Hyperplasia.Journal of clinical medicine · 2022Article
- Differences/Disorders of Sex Development: Medical Conditions at the Intersection of Sex and Gender.Annual review of clinical psychology · 2022Review
- Intersexuality/Differences of Sex Development through the Discourse of Intersex People, Their Relatives, and Health Experts: A Descriptive Qualitative Study.Healthcare (Basel, Switzerland) · 2022Article
- Descriptive Study of Gender Dysphoria and Sexual Behavior in a Disorder of Sex Development Group.Frontiers in psychology · 2022Article
- [Long-term morbidity in congenital adrenal hyperplasia].Der Internist · 2022Review
- The influence of psychosocial and sexual wellbeing on quality of life in women with differences of sexual development.Comprehensive psychoneuroendocrinology · 2021Article
- 46,XX DSD: Developmental, Clinical and Genetic Aspects.Diagnostics (Basel, Switzerland) · 2021Review
- The way toward adulthood for females with nonclassic congenital adrenal hyperplasia.Endocrine · 2021Review
- Quality of Life in Men With Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency.Frontiers in endocrinology · 2021Article
- Disorders of sexual development with XY karyotype and female phenotype: clinical findings and genetic background in a cohort from a single centre.Journal of endocrinological investigation · 2021Article
Corrections and comments
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Authors and funding
10 authors at 6 institutions in 5 countries.
Funding
Abstract
backgroundPrevious studies in quality of life (QOL) in individuals with disorders/differences of sex development (DSD) have been restricted to subpopulations of the condition. We describe QOL in adult persons with DSD compared to country specific references and assess the impact of diagnosis.
methodsThe multicentre cross-sectional clinical evaluation (dsd-LIFE) took place in 14 specialized clinics in six European countries. Adolescents (≥16 years) and adults having a DSD condition were included from 02/2014 to 09/2015. The main outcome QOL was measured by the WHOQOL-BREF (domains of physical health, psychological, social relationships, and environment). QOL was compared to country specific reference populations by using unpaired t-tests. Linear regression models explained the additional variance of the diagnosis on QOL.
resultsThree hundred one individuals with Turner Syndrome, 219 with Klinefelter Syndrome (including XYY), 226 with 46,XX CAH and 294 with rare DSD conditions (gonadal dysgenesis, androgen insensitivity syndrome, severe hypospadias, and androgen synthesis errors or other diagnosis) took part. Compared to healthy European populations, QOL was similar in psychological, slightly worse in physical health, and slightly better in environment. In social relationships, QOL was significantly poorer compared to healthy and non-healthy reference populations. In linear regression models health status was the most important predictor of QOL; additional variance was explained by feelings about household's income in all domains, and the relationship status in social relationships. Diagnosis explained nearly no additional variance.
conclusionsExcept for social relationships, most people with DSD adapt well to their life circumstances and report a good QOL. Not diagnosis, but the individual's health status is much more important than previously thought. Therefore care for people with DSD should focus more on chronic physical or mental health problems both related and unrelated to the diagnosis itself.
trial registrationGerman Clinical Trials Register DRKS00006072 .
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Registered trials
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.