Changes in Activity Participation After Multiple Sclerosis Diagnosis

Goverover, Yael; Genova, Helen M.; Smith, Angela D.; Lengenfelder, Jeannie; Chiaravalloti, Nancy D.

doi:10.7224/1537-2073.2018-036

Cited by 12 publications

(8 citation statements)

References 39 publications

(42 reference statements)

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“…walking, manual dexterity and cognition) over decades. 4–7 In fact, reduced ability to engage in activities that comprise a certain degree of complexity regarding initiative and planning is common even in PwMS mildly and moderately affected by multiple sclerosis (MS) 8 – varying from 21% in the mild group to 73% in the moderate group – which in turn has a negative impact on quality of life. 8,9 While most previous longitudinal studies have shown restricted participation in complex social/lifestyle activities (e.g.…”

Section: Introductionmentioning

confidence: 99%

Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation

et al. 2019

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Background: Identification of people with multiple sclerosis (PwMS) with increased risk of restricted participation in social and lifestyle activities (e.g. social outings and pursuing a hobby) could guide the development of interventions supporting sustained participation. Objective: To explore changes in participation in complex and social everyday activities over 10 years in PwMS in relation to multiple sclerosis (MS) severity and to identify predictors of sustained participation. Methods: This study was based on a 10-year follow-up of 264 PwMS living in Stockholm County, Sweden. Ten-year changes in participation in social/lifestyle activities were assessed and compared between PwMS with different MS severity with the Frenchay Activities Index using age- and sex-related normative values. Multiple logistic regression analyses were used to predict sustained participation at 10 years using personal factors, disease severity and functioning as independent variables. Results: While a majority of people with mild MS demonstrated sustained participation (67%), a minority of PwMS moderately (26%) and severely affected by MS (5%) demonstrated sustained participation. Significant predictors of sustained participation after 10 years were walking speed ⩾1.2 m/s and ⩾32 correct responses on the Symbol Digit Modalities Test. Conclusion: Our findings accentuate the importance for health services to support mobility and cognition to obtain sustained participation.

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Section: Introductionmentioning

confidence: 99%

Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation

et al. 2019

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“…A significant finding of the current study is that more HA were engaged in everyday occupations with and without modifications compared with persons with MS. We were not surprised to find that persons with MS were less engaged than HA in daily occupations during the pandemic. It is known that persons with MS usually experience some levels of restriction in occupations of daily living imposed by symptoms of their disease regardless of the pandemic ( Conradsson et al, 2018 ; Goverover et al, 2020 ). In addition, we found that changes in daily occupations were made by both groups in most activities, however, HA used more modifications than MS to maintain engagement.…”

Section: Discussionmentioning

confidence: 99%

“…MS affects up to a million people in the United States ( Wallin et al, 2019 ) and often results in limitations and restrictions in occupations of daily living ( Goverover et al, 2015 , 2020) and a reduced HrQOL ( Goverover et al, 2020 ). The challenges imposed by the pandemic may have had an additive negative effect on various aspects of life for individuals with MS.…”

Section: Introductionmentioning

confidence: 99%

Relationships between changes in daily occupations and health-related quality of life in persons with multiple sclerosis during the COVID-19 pandemic

Goverover

Chen

Botticello

et al. 2022

Multiple Sclerosis and Related Disorders

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Background: The COVID-19 pandemic provided a unique opportunity to explore the impact of the mandated lockdown and social distancing policies on engagement in daily occupations for individuals with multiple sclerosis (MS) and able bodied (i.e. healthy) adults. The study also examined whether the changes in daily occupations were associated with health-related quality of life (HrQOL). Methods: Between the spring and early fall of 2020, 69 persons with MS and 95 healthy adults completed an online survey that included measurements of 26 activities of daily life. For each activity, participants reported whether they continued to perform the activity (with or without adjustments), whether they stopped, or started to perform the activity during the pandemic. Social support, HrQOL, and demographics, including financial distress were also obtained. Results: Participants with MS and healthy adults both reduced the number of activities performed during the pandemic. Healthy adults continued to do more activities with and without adjustments compared with participants with MS. In both groups, better HrQOL was associated with the number of activities participants continued to do with and without adjustments, and worse HrQOL with the number of activities they stopped doing. Conclusions: Fewer persons with MS engaged in everyday occupations than healthy adults following the COVID-19 pandemic. The ability to maintain occupational engagement and to participate in social and daily activities is important for maintaining high HrQOL in both groups. Thus, these results call for attention in treatment and self-management of MS symptomatology.

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“…Processing speed is a fundamental cognitive function that underlies other cognitive processes, such as memory and executive functions (Costa, Genova, DeLuca, & Chiaravalloti, 2017). The role of cognition in activity performance, including IBT use, is of particular concern for persons with MS, for whom cognitive deficits are common (Chiaravalloti & DeLuca, 2008; Goverover et al, 2020). For technology design and training, processing-speed issues should be considered to improve the actual capabilities of persons with MS to use IBT.…”

Section: Discussionmentioning

confidence: 99%

“…MS most commonly follows a relapsing–remitting disease course, which affects 85% of those diagnosed (Hersch & Fox, 2018). Symptoms are usually chronic and progressive, with individuals experiencing disability in the form of impaired everyday activities and limited social participation (Goverover & DeLuca, 2018; Goverover, Genova, Smith, Lengenfelder, & Chiaravalloti, 2020).…”

mentioning

confidence: 99%

Internet-based technology in multiple sclerosis: Exploring perceived use and skills and actual performance.

Goverover¹,

Stern²,

Hurst³

et al. 2021

Neuropsychology

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Objective: The use of Internet-based technology (IBT) is an important component of everyday living. However, persons with multiple sclerosis (MS) may face barriers to use. This study aimed to compare IBT perceived use and skills and actual performance in persons with MS and healthy controls (HCs). In addition, it aimed to examine IBT perceptions as a unique predictor of IBT performance beyond demographic, cognitive, motor, and affective factors in persons with MS. Method: Ninety-six persons with MS and 65 HCs aged 18 to 65 completed self-report and performance-based IBT measures along with assessments of cognition, motor function, and affect at a single time point. Results: The MS group reported perceptions of less IBT use and poorer skills than HCs and demonstrated worse IBT performance as per accuracy and speed on the Actual Reality. In persons with MS, IBT perceptions and performance were significantly associated. Cognition and dexterity were significantly associated with IBT performance, and anxiety was associated with IBT perceptions. Disease duration, processing speed, and IBT perceptions were unique predictors of IBT performance in the MS group within a multivariate model. Conclusion: Persons with MS present with poorer IBT performance compared with HCs, which can limit participation. Processing speed and patient perceptions of IBT use and skills should be considered in technology design and training to improve the capabilities of persons with MS to use IBT for everyday living.

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Changes in Activity Participation After Multiple Sclerosis Diagnosis

Cited by 12 publications

References 39 publications

Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation

Participation in social/lifestyle activities in people with multiple sclerosis: Changes across 10 years and predictors of sustained participation

Relationships between changes in daily occupations and health-related quality of life in persons with multiple sclerosis during the COVID-19 pandemic

Internet-based technology in multiple sclerosis: Exploring perceived use and skills and actual performance.

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