ArticleJournal of general internal medicine2014
Utilization of health care services and satisfaction with care in adults affected by disorders of sex development (DSD).
Article in Journal of general internal medicine, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A Systematic Review of the Health and Healthcare Inequalities for People with Intersex Variance.International journal of environmental research and public health · 2020Pooled it
- Spectrum of disorders of sexual development in Duhok, Iraq (2012-2022): molecular and clinical profile with surgical outcomes.Hormone molecular biology and clinical investigation · 2026Article
- A Cognitive Behavioural Therapy for Mayer-Rokitansky-Küster-Hauser Syndrome Adapted for Other Disorders of Sex Development: A Qualitative Study.The Australian & New Zealand journal of obstetrics & gynaecology · 2026Article
- Intersex health training is associated with sustained competency gains in the healthcare workforce.Frontiers in public health · 2026Article
- Challenges in Care Provision for Children and Adolescents With Differences of Sex Development.Clinical endocrinology · 2025Article
- Cerebrovascular Health Among Sex- and Gender-Diverse People: A Narrative Review.Neurology. Clinical practice · 2025Review
- Satisfaction with health care among people with differences of sex development (DSD) in Germany.Endocrine connections · 2025Article
- Theorising health equity research for people with intersex variance through new materialism.Sociology of health & illness · 2023Review
- Cohort profile: pathways to care among people with disorders of sex development (DSD).BMJ open · 2022Article
- Body Image and Quality of Life in Women with Congenital Adrenal Hyperplasia.Journal of clinical medicine · 2022Article
- Identifying the Resource Needs of Young People with Differences of Sex Development.Journal of clinical medicine · 2022Article
- Article
- Post-donation satisfaction in kidney transplantation: a survey of living donors in Japan.BMC health services research · 2019Article
- A review of lesbian, gay, bisexual, trans and intersex (LGBTI) health and healthcare inequalities.European journal of public health · 2019Review
- Mental Health of a Large Group of Adults With Disorders of Sex Development in Six European Countries.Psychosomatic medicine · 2019Observational
- Co-producing knowledge of lesbian, gay, bisexual, trans and intersex (LGBTI) health-care inequalities via rapid reviews of grey literature in 27 EU Member States.Health expectations : an international journal of public participation in health care and health policy · 2019Review
- Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd-LIFE).BMC health services research · 2018Article
- Caring for individuals with a difference of sex development (DSD): a Consensus Statement.Nature reviews. Endocrinology · 2018Review
- Participation of adults with disorders/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population.BMC endocrine disorders · 2017Article
- Unexpected ethical dilemmas in sex assignment in 46,XY DSD due to 5-alpha reductase type 2 deficiency.American journal of medical genetics. Part C, Seminars in medical genetics · 2017Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundDisorders of sex development (DSD) are a heterogeneous group of rare genetic disorders of sex determination or differentiation. Evidence-based guidelines concerning gender assignment and surgical and hormonal treatment are limited for many DSD entities, and health care is highly fragmented across various sub-specialties and settings. A lack of informed consent, secrecy about the condition, shame, and impaired sexual and psychosocial functioning may affect satisfaction with care.
objectivesThe main goal of this study was to describe satisfaction with care in individuals with DSD and to identify factors associated with low satisfaction with care. METHODS/MAIN MEASURES: Using both biological (chromosomes) and social categories (sex of rearing), we classified participants according to the nomenclature of the European Society for Pediatric Endocrinology/Lawson Wilkins Pediatric Endocrine Society (ESPE/LWPES) consensus statement. We used standardized measures to assess satisfaction with care (CSQ-8), health-related quality of life (SF-36), psychological symptoms (BSI), and gender identity (FGI), in addition to self-constructed questionnaires probing experiences with health care and access to self-help groups.
participantsA total of 110 adults were recruited between January 2005 and December 2007 in four study centers in Germany, Austria, and German-speaking Switzerland.
resultsReports of half the participants scored below the cut-off indicating low quality of care. Women with XX DSD conditions and virilization (i.e., congenital adrenal hyperplasia) reported the highest scores for satisfaction with care, and women with XY DSD conditions and complete lack of androgen effects reported the lowest scores. Satisfaction with care was positively associated with indicators of psychological well-being.
conclusionsSatisfaction with care is lowest among participants with the rarest conditions, highlighting the lack of evidence-based recommendations and the lack of coordination of care. Associations of satisfaction and well-being indicate the need to ensure access to mental health services.
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