title: Predictors of health-related quality of life over time among adolescents and young adults with sickle cell disease.
abstract: Little is known about what factors affect the health-related quality of life (HRQoL) of adolescents and young adults (AYAs) with sickle cell disease (SCD), and how their HRQoL changes over time. This retrospective study included 87 AYAs attending a SCD Adolescent Clinic who completed a measure of HRQoL at each visit over the course of approximately 1.3 years. Results suggested that the following were associated with poorer physical HRQoL: being female, more healthcare utilization events, and presence of internalizing symptoms. Internalizing and externalizing symptoms were the only factors correlated with poorer psychosocial HRQoL. Generalized linear mixed models indicated that physical and psychosocial HRQoL improved among all participants during the assessment period, and those with externalizing behaviors reported faster improvement in physical HRQoL over time. AYAs with SCD may benefit from early mental health screening and intervention to optimize clinical care.
authors.affiliation: Center for Biobehavioral Health, Nationwide Children's Hospital, Columbus, OH, USA.
authors.forename: Jamie L
authors.initials: JL
authors.lastname: Jackson
authors.forename: Kathleen L
authors.initials: KL
authors.lastname: Lemanek
authors.forename: Emily
authors.initials: E
authors.lastname: Clough-Paabo
authors.forename: Melissa
authors.initials: M
authors.lastname: Rhodes
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000755:Anemia, Sickle Cell / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D011788:Quality of Life / Q000523:psychology*; D012189:Retrospective Studies; D012737:Sex Factors; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D055815:Young Adult