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.
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Acknowledgments
This work was supported by National Institutes of Health Grants T32 HL-098039 (to J. L. Jackson).
Conflict of Interest
First (Jackson), second (Lemanek), third (Clough-Paabo), and fourth (Rhodes) authors declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation of the Institutional Review Board of Nationwide Children’s Hospital and with the Helsinki Declaration of 1975, as revised in 2000. The study was approved as Exempt, and so informed consent was not required.
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Jackson, J.L., Lemanek, K.L., Clough-Paabo, E. et al. Predictors of Health-Related Quality of Life over Time Among Adolescents and Young Adults with Sickle Cell Disease. J Clin Psychol Med Settings 21, 313–319 (2014). https://doi.org/10.1007/s10880-014-9406-3
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DOI: https://doi.org/10.1007/s10880-014-9406-3