P250: “Don’t paint us all with the same brush”: Information needs in adolescents with differences of sex development
Year: 2023
Type: article
Study design: Observational Study
Abstract: Differences of sex development (DSD) are defined as rare congenital conditions in which the chromosomal, gonadal, and phenotypic sex characteristics of an individual lack congruency. DSDs are typically grouped into 3 categories: sex chromosome anomalies, XY conditions, and XX conditions. Most current literature on information needs for adolescents with DSDs focuses exclusively on parental experiences. Aims of this study were to descriptively assess information needs and perceived importance in adolescents and caregivers and to test the hypothesis that unmet needs are associated with worse health-related quality of life (HRQOL).
Source: Genetics in Medicine Open
Language: English
Subfield: Molecular Biology
Domain: Life Sciences
Open Access status: gold
Estimated APC paid: $3,200
OpenAlex ID: W4324117116