Development of Health-Related Quality of Life Instruments for Young Children With Disorders of Sex Development (DSD) and Their Parents
Development of Health-Related Quality of Life Instruments for Young Children With Disorders of Sex Development (DSD) and Their Parents
复制标题
DOI：
10.1093/jpepsy/jsw022
复制
发表时间：
2017-06-01
影响因子：
3.6
通讯作者：
Quittner, Alexandra L.
中科院分区：
文献类型：
--
作者：
Alpern, Adrianne N.;Gardner, Melissa;Quittner, Alexandra L.
ObjectiveaEuro integral 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 a6 years) health-related quality of life (HRQoL) instruments for DSD.aEuro integral MethodsaEuro integral Items were derived from focus groups and open-ended interviews. Clarity and comprehensiveness were assessed with cognitive interviews. Psychometric properties were examined in a field survey of 94 families.aEuro integral ResultsaEuro integral Measures demonstrated adequate to good psychometrics, including internal consistency, test-retest reliability, convergent validity, and ability to detect known-group differences. Parents reported greatest stress on Early Experiences, Surgery, and Future Concerns scales.aEuro integral ConclusionsaEuro integral These instruments identify patients' and families' needs, monitor health and quality of life status, and can evaluate clinical interventions. Findings highlight the need for improved psychosocial support during the diagnostic period, better parent-provider communication, and shared decision-making. HRQoL measures are needed for older youth.
