Fatigue is a significant contributor to illness intrusiveness in adult patients with sickle cell disease (SCD), which is a key determinant of health-related quality of life (HRQoL), according to a study published in the Journal of Clinical Psychology in Medical Settings. 

Because SCD can negatively impact multiorgan health, it is associated with significant morbidity and mortality. Studies indicate that pain and fatigue are the 2 most common complaints among patients with SCD. These may manifest as vaso-occlusive crises, which are acute periods of illness that require hospitalization. 

HRQoL is an important measure of treatment effectiveness and has gained attention as a key disease outcome in recent years. The self-assessment of HRQoL gives patients the latitude to appraise their well-being according to their ideals and expectations; it is a multidimensional construct covering all areas of an individual’s life. 

Illness intrusiveness, or the extent to which disease characteristics interfere in daily life, can negatively impact HRQoL. When patients are unable to participate in activities of daily living or lifestyle interests, their HRQoL is invariably affected. The authors of the study theorized that illness intrusiveness in SCD is associated with pain, fatigue, depression, and anxiety, which then lowers HRQoL. 

Read more about SCD etiology 

The research team conducted their study with 60 adults with SCD recruited from across the United States between October 2018 and April 2019. Participants must have access to an internet-enabled device as they were sent an online survey asking them to rate various disease parameters and their impact on HRQoL. In particular, participants were asked about the frequency of emergency department visits, pain/fatigue severity, depressive/anxiety symptoms, and illness intrusiveness. 

The researchers reported that patients who had greater levels of illness intrusiveness experienced higher levels of fatigue and depressive/anxiety symptoms (but not pain severity). In addition, illness intrusiveness was linked to poorer physical and mental HRQoL. The research team reported that fatigue severity emerged as a significant predictor of illness intrusiveness across various parameters. 

“Researchers should consider using the illness intrusiveness theoretical framework to better understand the impact of the SCD experience on HRQoL,” the authors suggested. 


McGill LS, Hughes AJ, Carroll CP, Bediako SM. Illness intrusiveness in adults with sickle cell disease: the role of fatigueJ Clin Psychol Med Settings. Published online March 7, 2023. doi:10.1007/s10880-023-09950-8