ArticleBMC health services research2018
Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE).
Article in BMC health services research, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of core outcomes reported in boys and men with Klinefelter syndrome.Endocrine · 2025Pooled it
- Health-related quality of life and caregiver burden in Chinese families with disorders of sex development: a person-centered analysis.European journal of pediatrics · 2026Article
- Differences of sex development.Nature reviews. Disease primers · 2025Review
- Challenges in Care Provision for Children and Adolescents With Differences of Sex Development.Clinical endocrinology · 2025Article
- Satisfaction with health care among people with differences of sex development (DSD) in Germany.Endocrine connections · 2025Article
- Multi-Stakeholder Opinion Statement on the Care of Individuals Born with Differences of Sex Development: Common Ground and Opportunities for Improvement.Hormone research in paediatrics · 2025Article
- Development of Quality Indicators to Evaluate the Quality of Care for People with Differences of Sex Development.Hormone research in paediatrics · 2025Article
- Structured care after a DSD diagnosis in childhood: a mixed methods evaluation of the Empower-DSD program.Frontiers in pediatrics · 2025Article
- Quality of care for people with differences of sex development (DSD) in Germany.Orphanet journal of rare diseases · 2024Article
- Psychosocial Support for Parents, Infants, Children, and Adolescents with Variations of Sex Characteristics: Results from a Pan-European Survey.Behavioral sciences (Basel, Switzerland) · 2024Article
- Emerging and upcoming therapies in insomnia.Translational and clinical pharmacology · 2024Article
- Diagnosis of DSD in Children-Development of New Tools for a Structured Diagnostic and Information Management Program within the Empower-DSD Study.Journal of clinical medicine · 2022Article
- Standards of Care for the Health of Transgender and Gender Diverse People, Version 8.International journal of transgender health · 2022Article
- A Short Form of the Child/Youth Health Care Questionnaire on Satisfaction, Utilization, and Needs in Children and Adolescents with a Chronic Condition (CHC-SUN-SF/YHC-SUN-SF).International journal of environmental research and public health · 2021Article
- Assessing the health-related management of people with differences of sex development.Endocrine · 2021Review
- 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
- Turner syndrome: mechanisms and management.Nature reviews. Endocrinology · 2019Review
- Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries.Psychosomatic medicine · 2019Observational
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
Abstract
backgroundTo investigate the association between the structural quality of care and patient satisfaction with care in individuals with disorders/ differences of sex development (DSD).
methodsA multicenter cross-sectional comparative study was conducted in 14 clinics in six European countries. We assessed the level of structural quality of care in each center using a self-constructed measure (Center Score) and the level of participant satisfaction with care using the customer satisfaction questionnaire (CSQ-4) and an adopted version of the Youth Health Care - Satisfaction, Utilization & Needs (YHC-SUN-SF). Data were obtained from individuals with Turner Syndrome (261), Klinefelter Syndrome (173), 46, XX congenital adrenal hyperplasia (190) and XY-DSD (257).
resultsWe found large variations between the scores for structural quality of care both within a diagnostic group and within a country; the overall association between participant satisfaction with the center score was significant.
conclusionsComparative effectiveness research across Europe can lead to more insight on beneficial structures and processes and the overall strategy to care for people with rare diseases in general and specific conditions such as disorders/ differences of sex development. Appreciation of higher levels of structural quality of the centers in this study supports the concept of comprehensive care.
trial registrationGerman Clinical Trials Register: Registration identification number: DRKS00006072 , date of registration April 17th, 2014. DRKS00006072 (German Clinical Trials Register).
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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.