Health-Related Quality of Life in Adults with Sickle Cell Disease: The Role of Illness Intrusiveness and Perceived Control

Abstract

Adults living with sickle cell disease (SCD) appear to have compromised health-related quality of life (HRQoL) that may be due to the disruptions they experience in their daily lives. While researchers have identified disease and treatment factors that are associated with HRQoL in this population, little is known about mechanisms that may explain the relationship between disease/treatment factors and HRQoL. The Illness Intrusiveness Theoretical Framework (IITF) has been used to explain the associations among disease/treatment factors and HRQoL in chronic health conditions; however, this framework has not been utilized in the context of SCD. The purpose of this study was to examine the relationships among disease/treatment factors, illness intrusiveness, perceived control, and HRQoL among 58 adults living with SCD (69% female, mean age 39.12 years). Participants reported demographic information and completed measures of pain, fatigue, number of emergency department (ED) visits, illness intrusiveness, perceived control, and HRQoL. Mediation analysis showed that illness intrusiveness reduced the association between fatigue and physical HRQoL. The indirect effect of fatigue on physical HRQoL through illness intrusiveness was significant (b = -0.60), after adjusting for age, pain, and number of ED visits. Additionally, perceived control over life reduced the association between illness intrusiveness and mental HRQoL. The indirect effect of illness intrusiveness on mental HRQoL through perceived control over life was significant (b = -0.09), after adjusting for age. The current findings suggest that illness intrusiveness, or disruptions in activities, may help explain the link between disease/treatment factors and HRQoL. Furthermore, perceived control may explain, at least in part, the association between illness intrusiveness and HRQoL. Future research may benefit from evaluating psychosocial factors (e.g., illness intrusiveness, perceived control, coping) that may impact well-being among adults with SCD.