Level of agreement between adolescents' self-assessment and parent proxy report of health-related quality of life in adolescents with sickle cell disease.
Alphanso L BlakeNatalie Guthrie-DixonMarlyn GrindleyAntoinette Barton-GoodenJennifer Knight-MaddenMonika Rani AsnaniPublished in: Pediatric blood & cancer (2020)
Parents and adolescents exhibit fair agreement in assessment of the adolescent's overall HRQOL but differ on subjective domains. Agreement varies by sex of the affected teen where girls' HRQOL is generally overestimated by the parental proxy. Interventions to improve parents' understanding of their children's psychosocial needs are needed.