Understanding Fatigue in Pediatric Sickle Cell Disease

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

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

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

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

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

Understanding Fatigue in Pediatric Sickle Cell Disease

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