Multidimensional Conceptualization and Assessment of Fatigue in Pediatric Sickle Cell Disease: Impact of Fatigue on Quality of Life

Abstract

Fatigue is a problematic symptom that has only recently gained attention in the literature for pediatric sickle cell disease (SCD). Research has established that fatigue is prevalent, persistent, and impairing, though much is left to understand about the presentation and impact of this symptom in this population. The current study sought to expand on previous literature by using a multidimensional conceptualization to examine fatigue using multiple indicators to capture a more comprehensive picture of fatigue and its impact on quality of life for youth with SCD. The first specific aim was to describe the experience of fatigue using surveys of self and other report, ecological momentary assessment (EMA) daily electronic diaries, and actigraphy as a proxy of a physiological measure of fatigue. The second aim was to examine relations between multiple fatigue indicators, and the third aim was to explore the impact on fatigue on quality of life (QOL) in youth with SCD. Eighty-nine children and adolescents with SCD ages 8-17 years old and their guardians were recruited from two regional pediatric SCD clinics. They completed structured interviews and measures of fatigue, and measures of quality of life. A subset of this sample, participating in a separate larger study, were asked to complete electronic daily diaries (EMA; N= 28) for up to one month, which included a brief one-item question about daily experience of fatigue. They were also asked to wear an accelerometer actigraphy wristwatch to measure continuous physical activity level for up to two weeks. Correlations and regression analyses were used to determine relationships of fatigue measures and their relation to QOL. Results indicated that youth experience significant symptoms of fatigue, and that their daily report of fatigue on EMA related to a previously validated measure of fatigue in youth with SCD. Fatigue, as measured by self and guardian-report surveys and EMA, was associated with lower QOL. Actigraphy measures of fatigue were not related to other fatigue measures or to QOL, and the structured fatigue interview was not related to QOL. Given these findings, fatigue is a common, problematic, and complex symptom of SCD requiring multiple levels of assessment, as well as additional research to better understand etiology, interaction of factors with other disease-related symptoms and their impact on QOL and daily functioning. With this increased understanding of fatigue, development of clinical prevention and intervention may be next steps to improving the lives of youth with SCD.