Factors that influence health-related quality of life in adolescents with sickle cell disease Public Deposited

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  • March 20, 2019
  • Brewer, Cheryl A.
    • Affiliation: School of Nursing
  • The chronic course of sickle cell disease (SCD) can be particularly burdensome for adolescents and can have a negative impact on health-related quality of life (HRQOL) during the time of transitioning from childhood to adulthood. Additionally, family functioning has been identified as an important predictor for how well children and adolescents cope with and adapt to SCD. Although there have been major medical advances that have benefited affected individuals, SCD imposes significant demands on affected children and their families. In light of the progress in management and treatment of SCD, and the developmental challenges associated with adolescence, it is an opportune time to assess HRQOL and family functioning in this population. The aims of the research were to: (1) appraise existing research related to family functioning and child outcomes in families of children and adolescents with SCD, (2) identify measures used to assess HRQOL, and (3) describe factors that influence HRQOL in adolescents with SCD. This is a manuscript style dissertation including 3 manuscripts encompassing a single program of research In manuscript 1, a total of 23 family functioning studies were identified. The findings indicated that families with high levels of family functioning were associated with affected children who had better adaptive outcomes. Low levels of family functioning were associated with children who had poorer adaptive outcomes. Family functioning assessments were influenced by issues such as number and relationships of informants, study designs, family functioning measures, and coping mechanisms. A total of seven HRQOL measures were identified among 25 studies in manuscript 2. The PedsQL emerged as the most flexible and useful HRQOL measurement for children and adolescents with SCD. Finally, in manuscript 3, a secondary data analysis was conducted on 482 adolescents to determine inter-relationships of HRQOL and influencing factors. Findings indicated that factors associated with reduced HRQOL included: (1) female gender compared to male gender, and (2) history of transfusions compared to no history. Factors associated with better HRQOL included: (1) mild disease severity compared to severe, (2) private health insurance compared to Medicaid/Medicare, and (3) other or no health insurance compared to Medicaid/Medicare.
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  • In Copyright
  • "... in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the School of Nursing"
  • Van Riper, Marcia
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  • Chapel Hill, NC
  • Open access

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