COPING WITH PAIN AND HEALTH-RELATED QUALITY OF LIFE AMONG ADULTS WITH SICKLE CELL DISEASE

Objectives The objectives of this dissertation are to: 1) to examine the psychometric properties of the CSQSCD among adult sickle cell disease (SCD) patients; 2) to identify psychosocial predictors of health-related quality (HRQOL) among adult SCD patients; and 3) to identify the distinct, multidimensional patterns of strategies for coping with SCD and their association with HRQOL among adult SCD patients in the United States. Methods This cross-sectional study was conducted using a web-based self-administered survey. Adults with SCD were recruited with the help of Rare Patient Voice, a market research company that maintains a panel of SCD patients. Psychometric properties of the CSQ-SCD were assessed in terms of its construct validity and internal consistency reliability using confirmatory factor analysis (CFA) and further exploratory factor analysis was also conducted. Structural equation modeling (SEM) was used to test a theory-driven model to identify psychosocial predictors of HRQOL in the study sample. Finally, unobserved subtypes of coping patterns among adult SCD patients were evaluated using latent class analysis. Results The study sample consisted of 196 adults SCD patients. The CSQ-SCD was found to have less than adequate psychometric properties. The CFA revealed a three-factor model for the CSQSCD but had a mediocre model fit. An exploratory factor analysis (EFA) revealed a three-factor model with different subscale loadings, demonstrating a better fit compared to the CFA model. Results from the SEM analysis suggested that crises severity, frequency, affective coping, and self-efficacy were key predictors of HRQOL among adults with SCD. The latent class analysis revealed three groups of underlying coping strategy patterns: cognitive coping, negative thinking/passive adherence coping, and physiological coping. Conclusions The study results indicated that the CSQ-SCD has somewhat poor psychometric properties to assess coping in adults with SCD. Clinicians and caregivers of patients with SCD should aim to mitigate affective coping strategies and encourage more self-efficacy related behaviors while discussing treatment with patients. This study also shows that SCD patients do not utilize one single method of coping, but instead use multiple coping strategies to improve their HRQOL