Social participation of patients with multiple sclerosis

Pokryszko−Dragan, Anna; Marschollek, Karol; Chojko, Aleksandra; Karasek, Magdalena; Kardyś, Adam; Marschollek, Paweł; Gruszka, Ewa; Nowakowska-Kotas, Marta; Budrewićz, Sławomir

doi:10.17219/acem/115237

Cited by 24 publications

(15 citation statements)

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“…This study's participants generally perceived a high likelihood of their participating in society, which differs sharply from the findings of previous studies of persons with MS ( 17 , 19 ). Indeed, it was rather unexpected.…”

Section: Discussioncontrasting

confidence: 99%

“…But since NMOSD and MS are both central nervous system inflammatory diseases, the results of research among patients with MS may be generalizable to the NMOSD population. Those results show that patients' social participation correlates with functional ability, negative emotions such as depression and anxiety ( 17 – 19 ) and other demographic and disease-related characteristics, including the course of the disease, income and so on ( 17 ). NMOSD entails severe dysfunction including visual impairment, lower limb paralysis, urinary retention and sensory impairment, and its activity limitations are usually more severe than among persons with MS.…”

Section: Introductionmentioning

confidence: 99%

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Factors Influencing Social Participation Among Persons With Neuromyelitis Optica Spectrum Disorders: A Cross-Sectional Study

et al. 2022

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BackgroundNeuromyelitis optica spectrum disorders seriously hinder social participation. Only clarifying the status of social participation and the factors most strongly influencing it can promote better-targeted support for those with neuromyelitis optica spectrum disorders.ObjectivesTo explore the factors influencing social participation among persons with neuromyelitis optica spectrum disorders.Methods138 persons with neuromyelitis optica were recruited by convenience sampling. They completed the Impact on Participation and Autonomy Questionnaire, and were rated using the Barthel index, the Beck Anxiety Inventory and the Beck Depression Inventory. The data were used to evaluate a generalized linear model predicting social participation.ResultsThe respondents mostly perceived good or very good possibilities of social participation, but participation outdoors and in social relations were considered more restricted. Ability in the activities of daily living, education level, bladder and bowel dysfunction, and depression were four significant predictors of social participation.ConclusionsStrengthening training in the activities of daily living, continuing education, giving positive psychological support and helping with bladder and bowel problems may help to promote social participation among those with neuromyelitis optica spectrum disorders.

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Section: Discussioncontrasting

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Factors Influencing Social Participation Among Persons With Neuromyelitis Optica Spectrum Disorders: A Cross-Sectional Study

et al. 2022

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“…Physical activity is highly relevant for patients because it has a large impact on employment and generally on the quality of life [ 4 ]. Mobility supports social participation and, in many cases, the ability to work, which is important to prevent persons with MS feeling isolated and depressed [ 5 ].…”

Section: Introductionmentioning

confidence: 99%

A Two-Minute Walking Test With a Smartphone App for Persons With Multiple Sclerosis: Validation Study

Oirschot¹,

Heerings²,

Wendrich³

et al. 2021

JMIR Form Res

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Background Walking disturbances are a common dysfunction in persons with multiple sclerosis (MS). The 2-Minute Walking Test (2MWT) is widely used to quantify walking speed. We implemented a smartphone-based 2MWT (s2MWT) in MS sherpa, an app for persons with MS. When performing the s2MWT, users of the app are instructed to walk as fast as safely possible for 2 minutes in the open air, while the app records their movement and calculates the distance walked. Objective The aim of this study is to investigate the concurrent validity and test-retest reliability of the MS sherpa s2MWT. Methods We performed a validation study on 25 persons with relapsing-remitting MS and 79 healthy control (HC) participants. In the HC group, 21 participants were matched to the persons with MS based on age, gender, and education and these followed the same assessment schedule as the persons with MS (the HC-matched group), whereas 58 participants had a less intense assessment schedule to determine reference values (the HC-normative group). Intraclass correlation coefficients (ICCs) were determined between the distance measured by the s2MWT and the distance measured using distance markers on the pavement during these s2MWT assessments. ICCs were also determined for test-retest reliability and derived from 10 smartphone tests per study participant, with 3 days in between each test. We interviewed 7 study participants with MS regarding their experiences with the s2MWT. Results In total, 755 s2MWTs were completed. The adherence rate for the persons with MS and the participants in the HC-matched group was 92.4% (425/460). The calculated distance walked on the s2MWT was, on average, 8.43 m or 5% (SD 18.9 m or 11%) higher than the distance measured using distance markers (n=43). An ICC of 0.817 was found for the concurrent validity of the s2MWT in the combined analysis of persons with MS and HC participants. Average ICCs of 9 test-retest reliability analyses of the s2MWT for persons with MS and the participants in the HC-matched group were 0.648 (SD 0.150) and 0.600 (SD 0.090), respectively, whereas the average ICC of 2 test-retest reliability analyses of the s2MWT for the participants in the HC-normative group was 0.700 (SD 0.029). The interviewed study participants found the s2MWT easy to perform, but they also expressed that the test results can be confronting and that a pressure to reach a certain distance can be experienced. Conclusions The high correlation between s2MWT distance and the conventional 2MWT distance indicates a good concurrent validity. Similarly, high correlations underpin a good test-retest reliability of the s2MWT. We conclude that the s2MWT can be used to measure the distance that the persons with MS walk in 2 minutes outdoors near their home, from which both clinical studies and clinical practice can benefit.

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“… 3 , 4 According to the International Classification of Functioning, Disability and Health (ICF), 5 participation and associated restrictions have been described as the involvement in and problems experienced with life situations. Given the broad nature of participation, efforts have been made to identify participation categories that may be particularly relevant for persons living with MS. 6 The brief ICF core set for MS identifies involvement in situations related to “solving problems”, “carrying out daily routines”, “walking”, “family relationships”, and “remunerative employment” as key categories of relevance for understanding and describing disability in persons with MS. 6 Additionally, “recreation and leisure”, “socializing”, and “community life” are aspects of participation that have been reported to be of relevance to persons with MS. 3 Outcomes that capture participation provide insights into the impact of MS on everyday living and have been identified as outcomes of high importance to people living with MS. 6 , 7 Importantly, persons with MS demonstrate significant impairment in multiple participation categories; and greater impairment is experienced as disability increases. 8 Despite this, there has been an underuse of study end-points that capture participation in clinical trials involving persons with MS. 9 Consequently, understanding the potential of interventions to improve participation is of the utmost importance.…”

Section: Introductionmentioning

confidence: 99%

Exercise training improves participation in persons with multiple sclerosis: A systematic review and meta-analysis

Edwards

Michelsen

Fakolade

et al. 2022

Journal of Sport and Health Science

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Social participation of patients with multiple sclerosis

Cited by 24 publications

References 0 publications

Factors Influencing Social Participation Among Persons With Neuromyelitis Optica Spectrum Disorders: A Cross-Sectional Study

Factors Influencing Social Participation Among Persons With Neuromyelitis Optica Spectrum Disorders: A Cross-Sectional Study

A Two-Minute Walking Test With a Smartphone App for Persons With Multiple Sclerosis: Validation Study

Exercise training improves participation in persons with multiple sclerosis: A systematic review and meta-analysis

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