Fatigue and quality of life in pediatric multiple sclerosis

Abstract

Fatigue and quality of life are significant concerns in adult multiple sclerosis (MS) but little is known about these factors in pediatric MS. The present investigation evaluates fatigue and quality of life in 51 pediatric MS patients to determine the rate of fatigue and reduced quality of life and assesses the relations between these variables and clinical factors. Fatigue and quality of life were assessed by self- and parent-report via the PedsQL Multidimensional Fatigue Scale and the PedsQL Quality of Life Scale. One-sample t-tests determined if scores were below published data for healthy individuals. Moreover, scores falling one standard deviation from norms were considered mildly affected, with severe difficulties being defined as scores falling two or more standard deviations from norms. Associations between self- and parent-reported difficulties and clinical factors were examined via Pearson correlation analyses. In comparison with healthy samples, pediatric MS patients reported greater difficulties with respect to fatigue, sleep, cognition, physical limitations, and academics. In addition to significant difficulties on these factors, parents reported problems with respect to emotional functioning, and tended to report greater fatigue, sleep, and cognitive difficulties than were self-reported. Expanded Disability Status Scale score was the only neurologic variable significantly related to fatigue or quality of life scores. Fatigue was significantly correlated with reports of sleep difficulties, cognitive problems, and quality of life variables. These findings suggest that fatigue and poorer quality of life is a clear concern in pediatric MS, and is related to overall physical disability.

Understanding fatigue in paediatric multiple sclerosis: a systematic review of clinical and psychosocial factors

“…6,7,[40][41][42][43] Amato et al [40][41][42] found no differences in fatigue between cognitively impaired and cognitively preserved caMS at baseline or between cognitively stable/ improving and cognitively deteriorating caMS at 2-and 5-year follow-up. These results were echoed by two crosssectional studies in which no significant associations were reported between fatigue and overall cognitive performance in caMS.…”

“…19 Multiple sclerosisrelated fatigue shows little association to clinical disease factors or disease-modifying treatment; thus it may impact on functioning even in the absence of obvious physical disability. 4,7 This suggests that other factors may contribute to the experience of multiple sclerosis-related fatigue.Despite its prevalence and severity, a comprehensive understanding of the aetiology of fatigue in caMS has not yet been achieved. 20 However, there is increasing recognition that multiple sclerosis-related fatigue in adults is a multifactorial construct.…”

“…19 Multiple sclerosisrelated fatigue shows little association to clinical disease factors or disease-modifying treatment; thus it may impact on functioning even in the absence of obvious physical disability. 4,7 This suggests that other factors may contribute to the experience of multiple sclerosis-related fatigue.…”

“…Previous research has suggested that discordance may reflect excessive parental worry or parents' moods. 6,7,14,52 Therefore, it may be beneficial for future research to assess mood in primary caregivers, and to consider this when assessing fatigue.The heterogeneity of included studies limited the extent to which fatigue in caMS could be explained by their findings. Clinical factors were measured in six studies and included disease duration, relapse rate, disability levels, and disease-modifying therapies.…”

“…[4][5][6] Moreover, psychosocial factors such as depression, lower quality of life, and fatigue are concerning features of paediatric multiple sclerosis, yet these features have received limited research attention to date. 6,7 Fatigue is the most common and one of the most disabling symptoms of multiple sclerosis, experienced by around 80% of adults with the disease. [8][9][10] Multiple sclerosis-related fatigue refers to a severe and overwhelming feeling of exhaustion and lack of energy, which may result in functional impairment.…”