Associations between fatigue and physical behavior in patients with multiple sclerosis with no or minimal disability

Eldemir, Kader; Güçlü-Gündüz, Arzu; Özkul, Çağla; Eldemir, Sefa; Söke, Fatih; İrkeç, Ceyla

doi:10.1080/21641846.2021.1923995

Cited by 6 publications

(2 citation statements)

References 35 publications

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“…The prevalence of fatigue: The results from the reviewed papers are equivalent when indicating that adults with MFS have vastly higher prevalence of fatigue than the general population; and it is likely that individuals with sHTADs may experience a significant impact of fatigue on daily life. This is in accordance with reports of fatigue in other severe conditions such as systemic sclerosis [ 81 ], multiple sclerosis [ 82 ], and cancer [ 83 ].…”

Section: Discussionsupporting

confidence: 93%

Fatigue in patients with syndromic heritable thoracic aortic disease: a systematic review of the literature and a qualitative study of patients’ experiences and perceptions

Velvin,

Johansen,

Østertun-Geirdal

et al. 2023

Orphanet J Rare Dis

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Introduction The purpose of this study was to explore the literature on fatigue in patients with syndromic heritable thoracic aortic disease (sHTAD), including Marfan syndrome (MFS), Loeys-Dietz syndrome (LDS), vascular Ehlers Danlos syndrome (vEDS) and other sHTADs, critically appraise and synthesize the relevant literature. We also aimed to investigate how adults with sHTAD experience and perceive fatigue, and to discuss clinical implications and direction for further research. Methods First, a systematic review was performed by searching the published literature in all relevant databases and other sources until 20th October 2022. Second, a qualitative focus group interview study was conducted of 36 adults with sHTADs (LDS n = 11, MFS n = 14, vEDS n = 11). Results In the systematic review, 33 articles satisfied the eligibility criteria (3 reviews and 30 primary studies). Of the primary studies: 25 dealt with adults (MFS n = 17, MFS/EDS n = 1, EDS n = 2, LDS/vEDS n = 3, different sHTADs n = 2), 5 with children (MFS n = 4, different sHTADs n = 1). Twenty-two were cross-sectional quantitative studies, 4 prospective and 4 qualitative studies. The quality of the included studies was mostly good, but many had small sample sizes, low response rates and/or participants without verified diagnosis. Despite these limitations, studies indicated high prevalence of fatigue (ranging from 37 to 89%), and fatigue was associated with both health and psychosocial aspects. Few studies found that fatigue was associated with disease-related symptoms. In the qualitative focus groups most of the participants reported that they had experienced fatigue which influenced several aspects of life. Four themes related to fatigue were elucidated: (1) different diagnoses–different fatigue?, (2) the nature of fatigue, (3) searches for causes of fatigue, (4) dealing with fatigue in daily life. The four themes seemed mutually interrelated in terms of barriers, strategies and facilitators for dealing with fatigue. The participants experienced fatigue as a consistent dilemma between self-assertion and inadequacy. Fatigue seems to influence several aspects of daily life and may be one of the most debilitating symptoms of having a sHTAD. Conclusion Fatigue seems to negatively impact the lives of people with sHTADs and should be recognized as an important aspect in the lifelong follow-up of these patients. The life-threatening complications of sHTADs may result in emotional stress, including fatigue and the risk of developing a sedentary lifestyle. Research and clinical initiatives should consider rehabilitation interventions aiming at postponing the onset or reducing symptoms of fatigue.

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Section: Discussionsupporting

confidence: 93%

Fatigue in patients with syndromic heritable thoracic aortic disease: a systematic review of the literature and a qualitative study of patients’ experiences and perceptions

Velvin,

Johansen,

Østertun-Geirdal

et al. 2023

Orphanet J Rare Dis

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“…This method was developed in healthy controls during treadmill walking at varying speeds [38]. It has since been used in populations with MS [40,45].…”

Section: Actigraph (Severity)mentioning

confidence: 99%

Non-equivalent, but still valid: Establishing the construct validity of a consumer fitness tracker in persons with multiple sclerosis

et al. 2023

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Tools for monitoring daily physical activity (PA) are desired by persons with multiple sclerosis (MS). However, current research-grade options are not suitable for longitudinal, independent use due to their cost and user experience. Our objective was to assess the validity of step counts and PA intensity metrics derived from the Fitbit Inspire HR, a consumer-grade PA tracker, in 45 persons with MS (Median age: 46, IQR: 40–51) undergoing inpatient rehabilitation. The population had moderate mobility impairment (Median EDSS 4.0, Range 2.0–6.5). We assessed the validity of Fitbit-derived PA metrics (Step count, total time in PA, time in moderate to vigorous PA (MVPA)) during scripted tasks and free-living activity at three levels of data aggregation (minute, daily, and average PA). Criterion validity was assessed though agreement with manual counts and multiple methods for deriving PA metrics via the Actigraph GT3X. Convergent and known-groups validity were assessed via relationships with reference standards and related clinical measures. Fitbit-derived step count and time in PA, but not time in MVPA, exhibited excellent agreement with reference measures during scripted tasks. During free-living activity, step count and time in PA correlated moderately to strongly with reference measures, but agreement varied across metrics, data aggregation levels, and disease severity strata. Time in MVPA weakly agreed with reference measures. However, Fitbit-derived metrics were often as different from reference measures as reference measures were from each other. Fitbit-derived metrics consistently exhibited similar or stronger evidence of construct validity than reference standards. Fitbit-derived PA metrics are not equivalent to existing reference standards. However, they exhibit evidence of construct validity. Consumer-grade fitness trackers such as the Fitbit Inspire HR may therefore be suitable as a PA tracking tool for persons with mild or moderate MS.

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Being highly sensitive person negatively impacts on cognitive and psychosocial fatigue in multiple sclerosis patients: A cross-sectional, monocenter study

Falco,

Lamagna,

Esposito

et al. 2024

Multiple Sclerosis and Related Disorders

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Associations between fatigue and physical behavior in patients with multiple sclerosis with no or minimal disability

Cited by 6 publications

References 35 publications

Fatigue in patients with syndromic heritable thoracic aortic disease: a systematic review of the literature and a qualitative study of patients’ experiences and perceptions

Fatigue in patients with syndromic heritable thoracic aortic disease: a systematic review of the literature and a qualitative study of patients’ experiences and perceptions

Non-equivalent, but still valid: Establishing the construct validity of a consumer fitness tracker in persons with multiple sclerosis

Being highly sensitive person negatively impacts on cognitive and psychosocial fatigue in multiple sclerosis patients: A cross-sectional, monocenter study

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