Development of Health-Related Quality of Life Instruments for Young Children With Disorders of Sex Development (DSD) and Their Parents | Zendy

Adrianne Alpern | Zendy; Melissa Gardner | Zendy; Barry Kogan | Zendy; David E. Sandberg | Zendy; Alexandra L. Quittner | Zendy

Open Access

Development of Health-Related Quality of Life Instruments for Young Children With Disorders of Sex Development (DSD) and Their Parents

Author(s) -

Adrianne Alpern,

Melissa Gardner,

Barry Kogan,

David E. Sandberg,

Alexandra L. Quittner

Publication year - 2016

Publication title -

journal of pediatric psychology

Language(s) - English

Resource type - Journals

SCImago Journal Rank - 1.054

H-Index - 121

eISSN - 1465-735X

pISSN - 0146-8693

DOI - 10.1093/jpepsy/jsw022

Subject(s) - psychosocial , psychometrics , psychology , psychological intervention , quality of life (healthcare) , clinical psychology , proxy (statistics) , clarity , reliability (semiconductor) , developmental psychology , focus group , psychiatry , biochemistry , chemistry , power (physics) , physics , quantum mechanics , marketing , machine learning , computer science , business , psychotherapist

Research in disorders of sex development (DSD) is hindered by a lack of standardized measures sensitive to the experiences of affected children and families. We developed and evaluated parent proxy (children 2-6 years) and parent self-report (children ≤6 years) health-related quality of life (HRQoL) instruments for DSD.

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