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

Carroll, Stephen; Chalder, Trudie; Hemingway, Cheryl; Heyman, Isobel; Moss‐Morris, Rona

doi:10.1016/j.ejpn.2016.06.004

Cited by 28 publications

(58 citation statements)

References 23 publications

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“…Sleep disorders may be associated with poor outcomes in adolescents, including daytime fatigue, impaired social and emotional functioning, and neurocognitive issues [ 45 ]. Only 2 published studies have directly investigated sleep in individuals with POMS [ 46 , 47 ]. Zafar et al (2015) performed a case-control study to determine whether individuals with pediatric MS ( n = 30) experience more sleep disturbances, daytime sleepiness, and fatigue than age-, sex-, and race-matched controls ( n = 52).…”

Section: Resultsmentioning

confidence: 99%

A Scoping Review of Modifiable Risk Factors in Pediatric Onset Multiple Sclerosis: Building for the Future

2018

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Knowledge of the effect of modifiable lifestyle factors in the pediatric multiple sclerosis (MS) population is limited. We therefore conducted a scoping review, following the framework provided by Arksey and O’Malley. Four databases were searched for pediatric MS and modifiable lifestyle factors using index terms and keywords, from inception to May 2018. All quantitative and qualitative primary articles were included and limited to English and full text. Of the 7202 articles identified and screened, 25 full-text articles were relevant to our objective and were included. These articles focused on diet obesity, physical activity, and sleep. In cross-sectional analyses, these lifestyle factors were associated with increased risk of pediatric onset MS (POMS), and increased disease activity. Diet, particularly vitamin D and vegetable intake, was associated with reduced relapse rate. Obesity was linked to increased risk of POMS, and physical activity was associated with reduced relapse rate and sleep/rest fatigue. Thus, available studies of lifestyle related outcomes in pediatric MS suggest specific lifestyle related factors, including obesity, higher vitamin D levels, and higher physical activity may associate with lower disease burden in POMS. Studies reviewed are limited by their observational designs. Future studies with longitudinal and experimental designs may further clarify the role of modifiable lifestyle factors in this population.

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Section: Resultsmentioning

confidence: 99%

A Scoping Review of Modifiable Risk Factors in Pediatric Onset Multiple Sclerosis: Building for the Future

2018

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“…This echoed recent qualitative data where fatigued caMS described engaging in all-or-nothing patterns of behaviour in response to fatigue, and feeling that fatigue was uncertain and uncontrollable. 8 Both these factors have previously shown associations with fatigue in adult MS and adolescent CFS, and strategies directed at modifying these behaviours and cognitions have been incorporated into CBT based interventions for fatigue. 11,29 As previous literature on adolescent CFS has informed the development of effective interventions for adolescent fatigue, the similarities identified between fatigued caMS and adolescents with CFS offer new insights into paediatric MS fatigue, and highlights potential targets for tailored interventions for caMS with fatigue.…”

Section: Discussionmentioning

confidence: 99%

“…A recent qualitative study suggested that caMS with fatigue have similar cognitive and behavioural responses to symptoms to those previously identified in adolescent CFS, such as perceiving fatigue as an uncertain, uncontrollable symptom, and engaging in "all-or-nothing" patterns of behaviour and daytime napping. 8,26 To date, much of the literature on psychosocial factors related to fatigue in paediatric conditions has e u r o p e a n j o u r n a l o f p a e d i a t r i c n e u r o l o g y 2 3 ( 2 0 1 9 ) 7 0 e8 0 been carried out in the context of CFS. 16 As paediatric fatigue is currently best understood from a biopsychosocial perspective in the context of adolescent CFS, assessing similarities and differences in fatigue and psychosocial factors between caMS and adolescents with CFS may offer insight into fatigue-related factors in paediatric MS.…”

Section: Introductionmentioning

confidence: 99%

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

Carroll

Chalder

Hemingway

et al. 2019

European Journal of Paediatric Neurology

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Background: Fatigue is a disabling, poorly understood symptom in children and adolescents with multiple sclerosis (caMS), for which effective treatments are lacking. In paediatric Chronic Fatigue Syndrome (CFS), effective psychological interventions have been developed based on psychosocial factors associated with fatigue. This study aimed to identify potentially modifiable factors of fatigue in caMS by comparing caMS, adolescents with CFS, healthy adolescents and their parents on measures of fatigue, psychosocial factors, and neurocognitive functioning. Methods: 175 participants including 30 caMS (15 fatigued, 15 non-fatigued), 30 adolescents with CFS, 30 healthy controls, and their parents were compared on measures of self-and parent-reported fatigue, adolescent and parent cognitive behavioural responses to symptoms, sleep, psychological difficulties, parental distress and objectively measured neurocognitive functioning. Results: Fatigue severity, functional impairment and cognitive behavioural responses to symptoms were equivalent in fatigued caMS and adolescents with CFS, and were significantly higher than in healthy controls and non-fatigued caMS. Neurocognitive functioning was impaired in both caMS groups, but was normal in adolescents with CFS and healthy controls. No between-group differences were identified in adolescent sleep behaviour or psychological difficulties. Parents of all illness groups had more unhelpful cognitions than parents of healthy controls. Psychological distress was elevated in parents of both fatigued groups.

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“…Twenty-one publications were identified that reported relapse rates for European pediatric patients with MS (see Additional File 2). Eleven publications reported continuous measures; these were mostly in the form of ARRs and ranged from 0.65(33, 34) to 1.8 (35). Two studies reported relapse rates over 5 years after disease manifestation (36,37).…”

Section: Relapse Ratesmentioning

confidence: 99%

A systematic literature review of the burden of pediatric multiple sclerosis in North America and Europe

Lb¹,

Goble²,

Kroes³

et al. 2019

Preprint

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Background: Multiple sclerosis (MS) is a chronic neurodegenerative condition that severely impacts patient functioning and quality of life (QoL). Onset of MS typically occurs in adults and evidence is growing for onset in children and adolescents. Several studies describe the clinical burden of pediatric MS; however, to date, no systematic literature review summarizing the clinical burden of pediatric MS has been published. Objective: To conduct a systematic literature review to identify published data on the epidemiology, disease characteristics, QoL, and economic burden of pediatric MS in North America and Europe. Methods: Systematic searches were conducted in Ovid MEDLINE®, Embase, and Cochrane library to identify studies that enrolled patients with pediatric MS and reported at least one outcome related to the epidemiological, humanistic, and economic burden of pediatric MS. Only English-language studies were included. Results: In total, 7,447 unique records were identified, of which 103 met the study’s inclusion criteria. Of the included articles, 9 reported incidence and prevalence, 39 reported relapse rates, 15 reported QoL, 22 reported fatigue, 37 reported cognitive function, and 17 reported school performance. Incidence of pediatric MS ranged from 0.30 to 2.64 per 100,000 person-years, with few studies suggesting that incidence may increase with age. Prevalence was reported as high as 14.6 cases per 100,000 persons in the USA and 9.6% of all MS patients in European countries. The range of annualized relapse rates was similar across countries, at 0.36-2.76 in North America and 0.65-1.11 in European countries. Patients with pediatric MS experienced reduced QoL compared to healthy controls. Patients experienced reduced diminished cognitive functioning, worse school performance and increased fatigue. Limited information was identified for the mortality and economic burden of pediatric MS. Conclusions: Several studies describe the clinical burden of pediatric MS. Although incidence and prevalence rates for the disease are relatively low, the rate of relapse and burden to patients is considerable. Further studies are required to address gaps in the understanding of prognostic factors for relapse and the impact of QoL, fatigue, and cognitive function. Additional research on mortality and economic outcomes will be important to guide treatment pathways and reimbursement decisions.

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

Cited by 28 publications

References 23 publications

A Scoping Review of Modifiable Risk Factors in Pediatric Onset Multiple Sclerosis: Building for the Future

A Scoping Review of Modifiable Risk Factors in Pediatric Onset Multiple Sclerosis: Building for the Future

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

A systematic literature review of the burden of pediatric multiple sclerosis in North America and Europe

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