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

Abstract

AIM Fatigue in children and adolescents with multiple sclerosis (caMS) is currently poorly understood. This review aimed to provide greater insight into this area and direction for future research by evaluating evidence of associations between fatigue and clinical, psychological, and social factors in caMS.METHOD Studies were identified by searching online databases, hand-searching reference lists, and requesting unpublished literature from key authors. Studies that examined fatigue in relation to at least one clinical, psychological, or social factor in caMS were included. Data on design, sample characteristics, measures of fatigue, clinical, psychological, and social variables, and key findings were extracted. Twelve studies were narratively synthesized.RESULTS Clinical factors appeared largely unrelated to fatigue, whereas associations between fatigue and tests of neurocognitive functioning, and fatigue and diagnosable psychiatric disorders, were mixed. However, fatigue and depressed mood consistently correlated. A small number of studies indicated associations between fatigue and reduced quality of life and school performance.INTERPRETATION A sufficient explanatory model of fatigue in caMS is lacking as studies in this area are few and diverse. Future research should endeavour to identify potentially modifiable clinical and psychosocial factors that are associated with fatigue in caMS so that interventions targeting such factors may be developed.Multiple sclerosis is a chronic neurodegenerative disorder characterized by inflammation and demyelination in the central nervous system, most often diagnosed in adulthood. 1 In rare cases, multiple sclerosis is diagnosed in childhood or adolescence.2 Paediatric acquired demyelinating syndromes, including paediatric multiple sclerosis, have an incidence rate of approximately 1 in 100 000. 3 In adult multiple sclerosis, sensory and motor impairments, optic neuritis, and bladder and bowel dysfunction are among the most common physical symptoms. In paediatrics, physical symptoms are less predominant but cognitive deficits more troublesome, typically affecting attention and processing speed, language, memory, and visuomotor functioning. [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.11 A growing body of evidence suggests that fatigue is also a significant problem in paediatric populations, affecting approximately 30% of the general adolescent population and a substantial proportion of children and adolescents with chronic illnesses such as cancer, rheumatoid arthritis, chronic pain, and neur...

“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

“…Canadian studies about childhood MS have highlighted young people's feelings of loss and grief and the challenges integrating treatment regimens and physical limitations into their daily lives (Boyd & MacMillan, ; Thannhauser, ; Thannhauser, Mah, & Metz, ). In addition, quantitative studies have discovered that young people with MS report lower health‐related quality of life (HRQoL) scores (Mowry et al, ) and have suggested that the fatigue they commonly experience may be associated with depression, reduced HRQoL, and lower school performance (Carroll, Chalder, Hemingway, Heyman, & Moss‐Morris, ; Toussaint‐Duyster, Wong, Van der Cammen‐van Zijp, Van Pelt‐Gravesteijn, & Catsman‐Berrevoets, ). To our knowledge, there have been no in‐depth qualitative studies conducted about young people's experiences of living with MS outside of Canada.…”

“It feels like wearing a giant sandbag.” Adolescent and parent perceptions of fatigue in paediatric multiple sclerosis

“…[2][3][4] Additionally, fatigue is one of the most common and disabling symptoms of MS, affecting up to 76% of children and adolescents with MS (caMS). 5,6 The evidence to date suggests that fatigue in caMS is unrelated to clinical disease factors or disease modifying treatments, but is consistently associated with depressed mood, impaired school performance and lower quality of life, and may also be linked to impaired performance on some neurocognitive tasks. 5 Despite its impact, fatigue in paediatric MS is poorly understood and under-researched.…”

Adolescent and parent factors related to fatigue in paediatric multiple sclerosis and chronic fatigue syndrome: A comparative study

“…3 Fatigue is also one of the most pervasive and disabling symptoms of MS. 18 In caMS, fatigue levels ranging from 9 to 76% have been reported in studies carried out across Europe and North America, with no clear reason for variability in reports. 9 Despite its impact, fatigue is a poorly understood symptom in paediatric MS, for which effective treatments are lacking. A recent systematic review of 12 studies that explored factors associated with fatigue in caMS indicated that fatigue is unrelated to clinical or demographic factors, but is associated with psychosocial factors including depressed mood, impaired school performance and lower quality of life.…”

“…Some evidence also suggested that fatigued caMS may have impaired performance on some neurocognitive tasks. 9 This systematic review highlighted the paucity of psychosocial factors explored in the context of fatigue, with most studies focusing on associations between fatigue and depressed mood. Few studies have investigated other potentially modifiable psychosocial factors related to fatigue, such as cognitive and behavioural responses to symptoms e.g.…”

“…Findings regarding concordance between self-and parent-reports have been mixed, demonstrating the need to collect multi-rater perspectives to get a clearer picture of children's fatigue. 9 In adult MS and adolescent CFS, cognitive behavioural therapy (CBT), which in this context helps people to identify and subsequently adapt their thoughts, behaviours and emotions that contribute to fatigue, has been effective in reducing fatigue severity and impact in clinical trials. 6,11,33,43 As parental factors may contribute to fatigue, adolescent CFS research has noted the importance of involving parents in interventions for fatigue.…”