Congenital Adrenal Hyperplasia: Classification of Studies Employing Psychological Endpoints

Stout, Stephanie A.; Литвак, М. М.; Robbins, Natashia M.; Sandberg, David E.

doi:10.1155/2010/191520

Cited by 36 publications

(34 citation statements)

References 97 publications

(72 reference statements)

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“…The psychological aspects of DSDs have either been narrowly conceptualized as brain gender research [43] or as a ‘catch-all concept' incorporating any broad social or psychological concepts [44]. An emergent conceptualization is evident in the 2006 Consensus Statement: ‘Psychosocial care provided by mental health staff with expertise in DSD should be an integral part of management to promote positive adaptation.…”

Section: Advancing and Evidencing Psychosocial And Psychosexual Well-mentioning

confidence: 99%

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

et al. 2016

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The goal of this update regarding the diagnosis and care of persons with disorders of sex development (DSDs) is to address changes in the clinical approach since the 2005 Consensus Conference, since knowledge and viewpoints change. An effort was made to include representatives from a broad perspective including support and advocacy groups. The goal of patient care is focused upon the best possible quality of life (QoL). The field of DSD is continuously developing. An update on the clinical evaluation of infants and older individuals with ambiguous genitalia including perceptions regarding male or female assignment is discussed. Topics include biochemical and genetic assessment, the risk of germ cell tumor development, approaches to psychosocial and psychosexual well-being and an update on support groups. Open and on-going communication with patients and parents must involve full disclosure, with the recognition that, while DSD conditions are life-long, enhancement of the best possible outcome improves QoL. The evolution of diagnosis and care continues, while it is still impossible to predict gender development in an individual case with certainty. Such decisions and decisions regarding surgery during infancy that alters external genital anatomy or removes germ cells continue to carry risk.

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Section: Advancing and Evidencing Psychosocial And Psychosexual Well-mentioning

confidence: 99%

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

et al. 2016

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“…Schönbucher et al, 2010;Wisniewski & Mazur, 2009). One review, for instance, examined the conceptual frameworks used by researchers seeking to interpret the role of androgen exposure in psychosexual development (Stout et al, 2010). This contributes to thinking about what kinds of psychosocial outcomes matter and how those outcomes are conceptualised.…”

Section: Reviews and Empirical Studiesmentioning

confidence: 99%

The Palgrave Handbook of the Psychology of Sexuality and Gender

Richards¹,

Barker²

2015

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“…masculinising effects of excess androgen on the female brain; 7 however, reduced quality of life has been demonstrated for adults with CAH. 8 Although steroid replacement therapy should avert adrenal crises and facilitate normal development, CAH has a lifelong impact on health.…”

Section: What This Study Addsmentioning

confidence: 99%

Late clinical presentation of congenital adrenal hyperplasia in older children: findings from national paediatric surveillance

Knowles

Khalid

Oerton

et al. 2013

Archives of Disease in Childhood

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ObjectivesTo describe the clinical presentation and sequelae, including salt-wasting crises of newly-diagnosed congenital adrenal hyperplasia (CAH) in children aged over 1 year in a contemporary population without screening. To appraise the potential benefit of newborn screening for late-presenting CAH.DesignActive national surveillance undertaken in Great Britain prospectively from 2007–2009 through the British Paediatric Surveillance Unit.SettingEngland, Wales and Scotland.PatientsChildren first presenting aged 1–15 years with clinical features of CAH and elevated 17-hydroxyprogesterone.ResultsFifty-eight children (26 [45%] boys) aged 1–15 years were reported; 50 (86%) had 21-hydroxylase deficiency. Diagnosis was precipitated by secondary sexual characteristics (n=38 [66%]; median age 5.8 [IQR] 4.8, 7.6) years, genital virilisation (8 girls; 3.2 [IQR 1.3, 7.3] years) or an affected sibling (n=8; 10.0 [IQR 7.4, 13.3] years). At least 33 (57%) children had advanced bone age and 13 (30%) were obese (body mass index ≥95th centile). No child had experienced a salt-wasting crisis.ConclusionsIn Great Britain, 30 children aged 1–15 years present annually for the first time with CAH. Older children frequently manifest prematurely advanced epiphyseal and pubertal maturation and genital virilisation, which are often irreversible and likely to have long-lasting consequences for adult health and wellbeing. Almost one-third of affected children are obese before commencing steroid therapy. Newborn screening offers the potential to avoid serious clinical manifestations in older children with unrecognised CAH; however, it may also detect some children who would otherwise remain asymptomatic and for whom the benefit from treatment is uncertain.

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Congenital Adrenal Hyperplasia: Classification of Studies Employing Psychological Endpoints

Cited by 36 publications

References 97 publications

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care

The Palgrave Handbook of the Psychology of Sexuality and Gender

Late clinical presentation of congenital adrenal hyperplasia in older children: findings from national paediatric surveillance

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