Fatigue and physical functioning in children with multiple sclerosis and acute disseminated encephalomyelitis

Toussaint-Duyster, Leontien C C; Wong, Yu Yi M.; Zijp, Monique Hm Van der Cammen-van; Pelt-Gravesteijn, Daniëlle Van; Catsman‐Berrevoets, Coriene E.; Hintzen, Rogier Q.; Neuteboom, Rinze F.

doi:10.1177/1352458517706038

Cited by 26 publications

(36 citation statements)

References 34 publications

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“…Fatigue has not been evaluated before in patients with anti-NMDAR encephalitis. However, it is known to be a common disabling symptom in pediatric acquired brain injury, 22 , 23 making our results that fatigue was associated with poorer QoL plausible. This finding is supported further by the frequent reporting of fatigue by patients as the most disabling symptom often hampering normal participation.…”

Section: Discussionmentioning

confidence: 59%

Long-term neuropsychological outcome following pediatric anti-NMDAR encephalitis

et al. 2018

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ObjectiveTo provide detailed long-term outcome data of children and adolescents following pediatric anti-N-methyl-d-aspartate receptor (anti-NMDAR) encephalitis, to identify neuropsychological impairments, and to evaluate the influence of these factors on quality of life (QoL).MethodsAll Dutch children diagnosed with anti-NMDAR encephalitis were identified. Patients currently aged 4 years or older were included in the follow-up study, consisting of a visit to our clinic for a detailed interview and a standardized neuropsychological assessment. The following domains were included: attention, memory, language, executive functioning, QoL, and fatigue. Primary outcome measures were z scores on sustained attention, long-term verbal memory, QoL, fatigue, and working memory.ResultsTwenty-eight patients were included. Median Pediatric Cerebral Performance Category at last visit was 1 (interquartile range 1–2, range 1–4), and 64% (18/28) of patients returned consistently to their previous school level. Twenty-two patients were included in the cross-sectional part of the long-term follow-up study. Median follow-up time was 31 months (interquartile range 15–49, range 5–91). There were problems with sustained attention (z = −2.10, 95% confidence interval = −2.71 to −1.46, p < 0.0001) and fatigue (z = −0.96, 95% confidence interval = −1.64 to −0.28, p = 0.008). Cognitive deficits were not correlated with QoL, while fatigue was strongly correlated with QoL (r = 0.82, p < 0.0001).ConclusionsAlthough follow-up is often reported as “good” following pediatric anti-NMDAR encephalitis, many patients have cognitive problems and fatigue, even up until adolescence, resulting in academic achievement problems and lower QoL. For physicians, it is essential to be aware of these problems, to provide valuable advice to patients and caregivers in the acute and follow-up phase, and to consider early neuropsychological counseling.

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Section: Discussionmentioning

confidence: 59%

Long-term neuropsychological outcome following pediatric anti-NMDAR encephalitis

et al. 2018

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“…Fatigue, mood disorders, anxiety and negative coping strategies could correlate with a negative school performance in these patients, and may interact with cognitive impairment as well [14–16]. …”

Section: Discussionmentioning

confidence: 99%

“…A recent study showed reduced age-expected brain growth in monophasic ADS patients, especially ADEM, indicating irreversible and continuing changes occurring in the CNS even in the absence of chronicity [ 35 ]. Furthermore, recent studies have shown long-term residual deficits in ADEM and monophasic patients, such as a higher prevalence of motor problems, lower physical activity and fatigue [ 14 , 15 ].…”

Section: Discussionmentioning

confidence: 99%

“…Yet, 15–32% of these children will fulfil the diagnostic criteria for paediatric MS within 5 years after the initial attack [ 1 , 2 , 7 , 8 ]. Multiple aspects of outcome of paediatric MS patients have been described before, including the rate of disease progression in Expanded Disability Status Scale (EDSS) scores [ 9 , 10 ], cognitive performance [ 11 – 13 ], decreased motor performance [ 14 , 15 ], and neuropsychiatric complaints like fatigue and mood disorders [ 14 , 16 ]. However, studies describing the long-term outcome of other ADS subtypes are scarce.…”

Section: Introductionmentioning

confidence: 99%

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Incidence and outcome of acquired demyelinating syndromes in Dutch children: update of a nationwide and prospective study

et al. 2018

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IntroductionAcquired demyelinating syndromes (ADS) are immune-mediated demyelinating disorders of the central nervous system in children. A nationwide, multicentre and prospective cohort study was initiated in the Netherlands in 2006, with a reported ADS incidence of 0.66/100,000 per year and MS incidence of 0.15/100,000 per year in the period between 2007 and 2010. In this study, we provide an update on the incidence and the long-term follow-up of ADS in the Netherlands.MethodsChildren < 18 years with a first attack of demyelination were included consecutively from January 2006 to December 2016. Diagnoses were based on the International Paediatric MS study group consensus criteria. Outcome data were collected by neurological and neuropsychological assessments, and telephone call assessments.ResultsBetween 2011 and 2016, 55/165 of the ADS patients were diagnosed with MS (33%). This resulted in an increased ADS and MS incidence of 0.80/100,000 per year and 0.26/100,000 per year, respectively. Since 2006 a total of 243 ADS patients have been included. During follow-up (median 55 months, IQR 28–84), 137 patients were diagnosed with monophasic disease (56%), 89 with MS (37%) and 17 with multiphasic disease other than MS (7%). At least one form of residual deficit including cognitive impairment was observed in 69% of all ADS patients, even in monophasic ADS. An Expanded Disability Status Scale score of ≥ 5.5 was reached in 3/89 MS patients (3%).ConclusionThe reported incidence of ADS in Dutch children has increased since 2010. Residual deficits are common in this group, even in monophasic patients. Therefore, long-term follow-up in ADS patients is warranted.

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“…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.…”

Section: Introductionmentioning

confidence: 99%

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

Kirk

Hinton

2019

Child

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Background: Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood.Aims: To explore how young people experience an MS diagnosis.Methods: Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom.Results: Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships.Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.

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Fatigue and physical functioning in children with multiple sclerosis and acute disseminated encephalomyelitis

Cited by 26 publications

References 34 publications

Long-term neuropsychological outcome following pediatric anti-NMDAR encephalitis

Long-term neuropsychological outcome following pediatric anti-NMDAR encephalitis

Incidence and outcome of acquired demyelinating syndromes in Dutch children: update of a nationwide and prospective study

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

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