Transition from Pediatric to Adult Care for Adolescents and Young Adults with a Disorder of Sex Development

Hullmann, Stephanie E.; Chalmers, Laura; Wisniewski, Amy B.

doi:10.1016/j.jpag.2011.11.003

Cited by 24 publications

(13 citation statements)

References 13 publications

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“…However, this is currently poorly identified. Developing a validated questionnaire or checklist can help clinicians to assess their patient’s understanding of the complex medical information they receive and their correct appraisal of the consequences of a decision in favour or against gonadectomy [30, 31]. Important questions and factors that can be part of such questionnaire are presented in Table 5.…”

Section: Discussionmentioning

confidence: 99%

Management of Gonads in Adults with Androgen Insensitivity: An International Survey

et al. 2018

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Background: Complete and partial androgen insensitivity syndrome (CAIS, PAIS) are associated with an increased risk of gonadal germ cell cancer (GGCC). Recent guidelines recommend gonadectomy in women with CAIS in late adolescence. Nevertheless, many adult women prefer to retain their gonads. Aims: This study aims to explore attitudes towards gonadectomy in AIS in centres around the world, estimate the proportion of adults with retained gonads and/or who developed GGCC, and explore reasons for declining gonadectomy. Methods: A survey was performed among health care professionals who use the International DSD Registry (I-DSD). Results: Data were provided from 22 centres in 16 countries on 166 women (CAIS) and 26 men (PAIS). In CAIS, gonadectomy was recommended in early adulthood in 67% of centres; 19/166 (11.4%) women refused gonadectomy. Among 142 women who had gonadectomy, evidence of germ cell neoplasm in situ (GCNIS), the precursor of GGCC, was reported in 2 (1.4%) out of 8 from whom pathology results were formally provided. Nine out of 26 men with PAIS (34.6%) had retained gonads; 11% of centres recommended routine gonadectomy in PAIS. Conclusion: Although development of GGCC seems rare, gonadectomy after puberty is broadly recommended in CAIS; in PAIS this is more variable. Overall, our data reflect the need for evidence-based guidelines regarding prophylactic gonadectomy in AIS.

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Section: Discussionmentioning

confidence: 99%

Management of Gonads in Adults with Androgen Insensitivity: An International Survey

et al. 2018

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“…32 Further, transition to adult health care services requires the early anticipation of adolescents' needs. 33 …”

Section: Discussionmentioning

confidence: 99%

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

et al. 2014

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“…From a patient perspective, structured and continued follow-up might increase beneficial interactions with health-care professionals, potentially enhancing understanding of the specific conditions, knowledge of future medical needs and compliance with the treatment 26 . A predefined schedule would greatly support patients and health-care staff during the vulnerable transition phase from adolescence to adulthood, encourage patients to prepare for discussions with caregivers and facilitate movement from one clinic to another by providing a personal summary of medical history [27][28][29] .…”

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confidence: 99%

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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Transition from Pediatric to Adult Care for Adolescents and Young Adults with a Disorder of Sex Development

Cited by 24 publications

References 13 publications

Management of Gonads in Adults with Androgen Insensitivity: An International Survey

Management of Gonads in Adults with Androgen Insensitivity: An International Survey

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

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

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