Utilization of Health Care Services and Satisfaction with Care in Adults Affected by Disorders of Sex Development (DSD)

Thyen, Ute; Lux, Anke; Jürgensen, Martina; Hiort, Olaf; Köhler, Birgit

doi:10.1007/s11606-014-2917-7

Cited by 50 publications

(67 citation statements)

References 28 publications

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“…Similar restrictions based on biomedical diagnoses of intersex people apply. Intersex relates to a range of physical traits or variation that lie between binary ideals of male and female where many forms of intersex variance exist, whilst understanding sex as a spectrum rather than a binary category . A range of intersex variations are diagnosed as ‘disorders of sex development’ (DSD) which unnecessarily medicalize intersex people based on physical difference.…”

Section: Discussionmentioning

confidence: 99%

“…Studies undertaken often fail to account for the views of intersex people themselves, focusing instead on biomedical conditions and surgical outcomes . Further research is needed in collaboration with intersex people to understand their experiences of accessing health care . The same applies to research with trans and LGB groups, where much scope remains to include LGBTI people in research.…”

Section: Introductionmentioning

confidence: 99%

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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

Sherriff

Zeeman

McGlynn

et al. 2019

Health Expectations

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Background The health inequalities experienced by lesbian, gay, bisexual, trans and intersex (LGBTI) people are well documented with several reviews of global research summarizing key inequalities. These reviews also show how the health‐care needs of LGBTI people are often poorly understood whilst suggesting that targeted initiatives to reduce inequalities should involve LGBTI people. Objectives To determine what is known about the health‐care inequalities faced by LGBTI people? What are the barriers faced by LGBTI people whilst accessing health care, and health professionals when providing care? What examples of promising practice exist? Design Rapid reviews of grey literature were co‐produced with LGBTI people in 27 countries followed by a thematic analysis and synthesis across all data sets. The review included grey literature from each country that might not otherwise be accessible due to language barriers. Main results Rapid reviews showed that LGBTI people faced various inequalities and barriers whilst accessing health care. Where heterosexuality, binary gender and assumed male/female sex characteristics were upheld as the norm, and where LGBTI people differed from these norms, discrimination could result. In consultations where LGBTI people feared discrimination and did not disclose their LGBTI status, health professionals lacked the information required for appropriate assessments. Conclusion With greater understanding of sexual orientation (LGB people), gender identity (trans people) and sex characteristics (intersex people), combined with access to contemporary knowledge and training, health professionals can work in collaboration with researchers, policymakers and LGBTI people to develop systems that are better attuned to the needs of all service users.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Sherriff

Zeeman

McGlynn

et al. 2019

Health Expectations

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show abstract

“…Assessing outcome, patient satisfaction and quality of care provided, i.e. not only an expression of which specialists and at what time, is inherently more difficult, and requires participation in internal and external quality schemes which may in turn produce quality of care indicators and implement outcome measures [2, 21, 22]. It is possible that some centres may have been involved in audit activities targeted at laboratory processes but these were not captured.…”

Section: Discussionmentioning

confidence: 99%

Current models of care for disorders of sex development – results from an International survey of specialist centres

Kyriakou

Dessens

Bryce

et al. 2016

Orphanet J Rare Dis

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BackgroundTo explore the current models of practice in centres delivering specialist care for children with disorders of sex development (DSD), an international survey of 124 clinicians, identified through DSDnet and the I-DSD Registry, was performed in the last quarter of 2014.ResultsA total of 78 (63 %) clinicians, in 75 centres, from 38 countries responded to the survey. A formal national network for managing DSD was reported to exist in 12 (32 %) countries. The paediatric specialists routinely involved in the initial evaluation of a newborn included: endocrinologist (99 %), surgeon/urologist (95 %), radiologist (93 %), neonatologist (91 %), clinical geneticist (81 %) and clinical psychologist (69 %). A team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, and nursing was only possible in 31 (41 %) centres. Of the 75 centres, 26 (35 %) kept only a local DSD registry and 40 (53 %) shared their data in a multicentre DSD registry. Attendance in local, national and international DSD-related educational programs was reported by 69, 78 and 84 % clinicians, respectively. Participation in audits/quality improvement exercises in DSD care was reported by 14 (19 %) centres. In addition to complex biochemistry and molecular genetic investigations, 40 clinicians (51 %) also had access to next generation sequencing. A genetic test was reported to be more preferable than biochemical tests for diagnosing 5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase 3 deficiency by 50 and 55 % clinicians, respectively.ConclusionDSD centres report a high level of interaction at an international level, have access to specialist staff and are increasingly relying on molecular genetics for routine diagnostics. The quality of care provided by these centres locally requires further exploration.

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“…At the same time, clinical observations have led to the recognition that health care up to now fell short of bringing adequate improvements to the medical management of patients with DSD [Thyen et al, 2014]. It is thought that this is a matter of the lack of diagnosis in many cases of DSD, but it might also be due to a misinterpretation of the aims of medicalization of these conditions in that altering the phenotype to the appearance of the usual sexes would help to 'treat' a possible gender insecurity and thus improve health-related quality of life.…”

Section: Genetic Investigationsmentioning

confidence: 99%

Concluding Remarks - From Bench to Bed

Hiort

2018

Sex Dev

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Utilization of Health Care Services and Satisfaction with Care in Adults Affected by Disorders of Sex Development (DSD)

Cited by 50 publications

References 28 publications

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

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

Current models of care for disorders of sex development – results from an International survey of specialist centres

Concluding Remarks - From Bench to Bed

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