Coping With Diverse Sex Development: Treatment Experiences and Psychosocial Support During Childhood and Adolescence and Adult Well-Being

Schweizer, Katinka; Brünner, Franziska; Gedrose, Benjamin; Handford, Christina; Richter‐Appelt, Hertha

doi:10.1093/jpepsy/jsw058

Cited by 39 publications

(57 citation statements)

References 66 publications

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“…Transparent and complete information is crucial for helping patients cope throughout their lives, and patients often fully understand the information only after several appointments with health-care professionals 12,26 . Diagnostic and treatment-related information should be given in the context of typical sex differentiation and/or development for improved conceptual grasp of naturally occurring variations.…”

Section: Sexual Orientationmentioning

confidence: 99%

“…Impaired body experiences, such as decreased body satisfaction or decreased feeling of attractiveness in adults with a DSD, have resulted, in part, from past negative experiences 12 . Therefore, all genital assessments should be limited to a minimum and performed with great caution and with explicit consent from patients and Recommendations on how to perform necessary genital exams in children who have genital differences, and for preparing the child for this procedure, have been described elsewhere 56 .…”

Section: Suggested Data Collection Across Ages Assessment Of Genital mentioning

confidence: 99%

“…As a result, clinical studies focusing on comorbidities, treatment effects, outcomes in adults and psychosocial issues are placed high on the research agenda. How patients experience having a DSD and how they cope with medical procedures need to receive more attention in research and clinical practice 12 .…”

mentioning

confidence: 99%

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Caring for individuals with a difference of sex development (DSD): a Consensus Statement

et al. 2018

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The term differences of sex development (DSDs; also known as disorders of sex development) refers to a heterogeneous group of congenital conditions affecting human sex determination and differentiation. Several reports highlighting suboptimal physical and psychosexual outcomes in individuals who have a DSD led to a radical revision of nomenclature and management a decade ago. Whereas the resulting recommendations for holistic, multidisciplinary care seem to have been implemented rapidly in specialized paediatric services around the world, adolescents often experience difficulties in finding access to expert adult care and gradually or abruptly cease medical follow-up. Many adults with a DSD have health-related questions that remain unanswered owing to a lack of evidence pertaining to the natural evolution of the various conditions in later life stages. This Consensus Statement, developed by a European multidisciplinary group of experts, including patient representatives, summarizes evidence-based and experience-based recommendations for lifelong care and data collection in individuals with a DSD across ages and highlights clinical research priorities. By doing so, we hope to contribute to improving understanding and management of these conditions by involved medical professionals. In addition, we hope to give impetus to multicentre studies that will shed light on outcomes and comorbidities of DSD conditions across the lifespan.

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Section: Sexual Orientationmentioning

confidence: 99%

Section: Suggested Data Collection Across Ages Assessment Of Genital mentioning

confidence: 99%

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Caring for individuals with a difference of sex development (DSD): a Consensus Statement

et al. 2018

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“…Raising awareness about differences of sexual differentiation and development amongst medical professionals and the public at large will help in mitigating the stigma attached to these disorders. These individuals often go through life maladjusted and unhappy in their assigned gender roles, with higher suicide rates as a consequence (9). They may also suffer from physical and sexual abuse, thus adding to the psychological trauma.…”

Section: Discussionmentioning

confidence: 99%

Pregnancy in A Male: A Surprising Late Consequence of Mistaken Sex/Gender Assignment

Ahsan¹,

Ghaus²,

Bhutta

et al. 2018

AACE Clinical Case Reports

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Objective: Gender/sex assignment is a crucial process in patients with genital ambiguity. This is a case report of a patient who had an anatomic anomaly and was misassigned with indeterminate sex and wrongfully assigned male sex for rearing. Methods: A 22-year-old unmarried male presented via the surgery department with progressively enlarging mass in the abdomen and vague abdominal discomfort. Examination revealed female secondary sexual characteristics and lack of facial/body hair. Radiologic investigations revealed a pregnancy of 26-weeks gestation. Karyotyping confirmed 46,XX. Results: Gender re-assignment was undertaken with multidisciplinary support. Baby was delivered at term, while maintaining strict confidentiality. This case reflects how flawed assessment and management of sexual ambiguity can be, even in cases handled in large tertiary care hospitals, despite the absence of clear sexual ambiguity. Careful handling of the social issues with regards to changes in gender expression and the fate of the baby may have saved lives in this case. Conclusion: A multidisciplinary conference of specialists interested in gender issues should be held in all cases of gender confusion so that mistakes like this do not happen. (AACE Clinical Case Rep. 2018;4:e217-e220) See accompanying article, p. e267.

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“…Our knowledge on the prenatal sex development and pubertal maturation pathways has improved considerably in the past 20 years due to cutting-edge research on mammalian development and elucidation of underlying genetic mechanisms 29,30 . In parallel, descriptive clinical outcome studies have provided some insight into the long-term outcome of affected people 31,32,33 . However, the results of these studies are mostly inconclusive due to the small sample sizes and broad heterogeneity of participants as well as differences in applied methodology and measures.…”

Section: Introductionmentioning

confidence: 99%

Addressing gaps in care of people with conditions affecting sex development and maturation

et al. 2019

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Differences of sex development (DSD) are defined as conditions with discrepancies between chromosomal, gonadal and phenotypic sex. In congenital hypogonadotropic hypogonadism (CHH), a lack of gonadotropin activity results primarily in the absence of pubertal development with prenatal sex development being (almost) unaffected in most patients. To expedite progress in the care of people affected by DSD and CHH, the European Union has funded a number of scientific networks. Two Actions of the Cooperation of Science and Technology (COST) programmes-DSDnet (BM1303) and GnRHnetwork (BM1105)-provided the framework for groundbreaking research and allowed the development of position papers on diagnostic procedures and special laboratory analyses, as well as clinical management. Both Actions developed educational programmes to increase expertise and promote interest in this area of science and medicine. In this Perspectives, we discuss the success of the COST Actions DSDnet and GnRHnetwork, and the European Reference Network for Rare Endocrine Conditions (Endo-ERN) and provide recommendations for future research.

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Coping With Diverse Sex Development: Treatment Experiences and Psychosocial Support During Childhood and Adolescence and Adult Well-Being

Abstract: Social support and DSD-related treatment experiences appear to have an impact on adult well-being. Appropriate psychosocial care including peer-to-peer support should be made available to children with DSD and their families.

Cited by 39 publications

References 66 publications

Caring for individuals with a difference of sex development (DSD): a Consensus Statement

Caring for individuals with a difference of sex development (DSD): a Consensus Statement

Pregnancy in A Male: A Surprising Late Consequence of Mistaken Sex/Gender Assignment

Addressing gaps in care of people with conditions affecting sex development and maturation

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