Understanding Fatigue in Pediatric Sickle Cell Disease

Abstract

Fatigue is a problematic symptom for adults with SCD and other pediatric populations, but less is known about the experience of fatigue for youth with SCD. The present study described the experience of fatigue in children and adolescents with SCD, and examined the combined and unique influences of anemia, sleep quality, and pain on fatigue in this population. Ninety youth with SCD (aged 8 - 17 years) and their guardians were recruited at their outpatient pediatric SCD clinic appointments. They completed interviews and questionnaires concerning the youth's experiences of fatigue, including fatigue frequency, duration, severity, level of interference with daily activities, and how it presents (e.g., general fatigue, sleep/wake fatigue, or cognitive fatigue). They also reported on the youth's pain episodes in the past year (pain frequency, duration, severity), and behavioral sleep quality. Their medical chart were reviewed to determine level of anemia (hemoglobin level) at their clinic visit. The majority (75%) of youths' guardians reported that their youth experienced fatigue in the last month, and that the experience was primarily episodic, occurring an average of 7 times per month, and lasting almost 10 hours on average. Adolescents experienced longer fatigue episodes and worse cognitive fatigue than children. Findings also indicated that poor sleep quality and pain contributed to fatigue experience. Also, sleep quality moderated the relationship between pain and fatigue, such that having poorer sleep quality worsened the effect of pain on fatigue presentation. Findings underlie the importance of fatigue as a common and multidimensional symptom of pediatric SCD that functions in relation to other disease symptoms. Clinically, these findings suggest the need for consistent screenings for fatigue symptoms and sleep problems in youth with SCD, as well as interventions targeting poor sleep and pain to address issues of fatigue in youth with SCD.