Health-related quality of life in children with disorders of sex development (DSD)

Jürgensen, Martina; Lux, Anke; Wien, Sebastian Benedikt; Kleinemeier, Eva; Hiort, Olaf; Thyen, Ute

doi:10.1007/s00431-014-2264-z

Cited by 42 publications

(33 citation statements)

References 47 publications

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“…The Kinder Lebensqualität Fragebogen (KINDL-R; questionnaire for measuring health-related quality of life in children and adolescents, revised version) [39] is a wellestablished instrument used to measure QoL for children aged 8-16 years in numerous clinical and epidemiological studies, including several in Norway [7,9,[40][41][42][43][44]. It consists of 24 items constituting six subscales, each measured with four items: Physical Well-being, Emotional Well-being, Self-esteem, and Family, Friends, and School.…”

Section: Quality Of Lifementioning

confidence: 99%

Quality of life among adolescents living in residential youth care: do domain-specific self-esteem and psychopathology contribute?

et al. 2017

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Purpose Many adolescents living in residential youth care (RYC) institutions perceive their quality of life (QoL) to be low. Enhancing QoL is thus important, but little is known about the potential contributors to their QoL. Early interpersonal trauma and subsequent removal from home and repeated relocations to new placements are expected to affect mental health and self-esteem. We therefore investigated if domain-specific self-esteem contributed to QoL among adolescents living in RYC institutions over and beyond their levels of psychopathology. Methods All youth in Norwegian RYC institutions between the ages 12-23 years were invited to participate. Of a total of 98 RYC institutions, 86 participated, and 400 of 601 eligible youths were examined. The participants' primary contact completed the Child Behavior Checklist to assess psychopathology. The adolescents completed a revised version of the Self-Perception Profile for Adolescents and the questionnaire for measuring health-related quality of life in children and adolescents (KINDL-R). Results After adjusting for psychopathology, age, and gender, self-esteem domains uniquely explained 42% of the variance in Qol, where social acceptance (b = 0.57) and physical appearance (b = 0.25) domains significantly predicted concurrent QoL. Conclusions The self-esteem domains, social acceptance and physical appearance, add substantially to the explained variance in QoL among adolescents living in RYC institutions, over and beyond the levels of psychopathology. These self-esteem domains may be targets of intervention to improve QoL, in addition to treating their psychopathology.

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Section: Quality Of Lifementioning

confidence: 99%

Quality of life among adolescents living in residential youth care: do domain-specific self-esteem and psychopathology contribute?

et al. 2017

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“…53 However, a less strong female identification and gender dysphoria are more common in this group than in women without CAH 51,[54][55][56] and this may affect their quality of life. 57 Early management in DSD has been based on the need to establish sex of rearing. Thereafter, medical and surgical treatment has been used to reinforce this decision.…”

Section: Current and Emerging Therapies -Ethical Challengesmentioning

confidence: 99%

“…44,83 The children should participate in decisions that affect them now or later and they should be comprehensively informed about their condition. 57 Children who are informed and educated about their condition will have better opportunities to develop adaptive coping skills, including development of a positive self-image and expectations for a fulfilling adult life.…”

mentioning

confidence: 99%

Disorders of sex development: advances in genetic diagnosis and challenges in management

Kyriakou¹,

Lucas‐Herald²,

McGowan³

et al. 2015

AGG

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Disorders of sex development (DSD) are a group of rare conditions that usually present with atypical genitalia in the newborn period or as delayed puberty in an adolescent. Although a concern about the development of external genitalia may exist in one in 300 newborn infants, discrete genetic conditions that underlie DSD are generally rarely identified. It is likely that this diagnostic gap exists for a number of reasons and these include an inadequate knowledge of the pathogenesis and underlying mechanisms that lead to DSD, variation in assessment and in-depth phenotyping of these rare conditions, inadequate availability of quality accredited laboratories and, lastly, limited awareness of the value of a molecular genetic diagnosis for improving short-term and long-term care of the affected person.

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“…Because DSD is an uncommon phenomenon, there has been limited data concerning the eventual outcomes regarding gender identity, gender role identification, or sexual orientation, and in many of these conditions, information about long-term gender development is unfortunately not syndrome-specific [66][67][68][69][70][71]. The effect of hormonal imprinting on gender development may be elucidated through existing animal models and also the observations of human case studies in DSD patients [61].…”

Section: Gender Assignment In Dsdmentioning

confidence: 99%

Gender identity, gender assignment and reassignment in individuals with disorders of sex development: a major of dilemma

Fisher

Ristori

Fanni

et al. 2016

J Endocrinol Invest

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Health-related quality of life in children with disorders of sex development (DSD)

Abstract: Psychosocial support of children with DSD and their families appears to be necessary in at least some cases and must be accessible for all patients.

Cited by 42 publications

References 47 publications

Quality of life among adolescents living in residential youth care: do domain-specific self-esteem and psychopathology contribute?

Quality of life among adolescents living in residential youth care: do domain-specific self-esteem and psychopathology contribute?

Disorders of sex development: advances in genetic diagnosis and challenges in management

Gender identity, gender assignment and reassignment in individuals with disorders of sex development: a major of dilemma

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