Measuring participation in people living with multiple sclerosis: A comparison of self-reported frequency, importance and self-efficacy

Yorkston, Kathryn M.; Kuehn, Carrie M.; Johnson, Kurt; Ehde, Dawn M.; Jensen, Mark P.; Amtmann, Dagmar

doi:10.1080/09638280701191891

Cited by 35 publications

(24 citation statements)

References 31 publications

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“…Consistent with the research literature for people with MS, cognitive impairment can negatively impact many aspects of daily life and is a significant and consistent predictor of reductions in quality of life (36). However, the latter findings about mobility impairment and ADLs are inconsistent with the existing research literature in people with disabling conditions (32, 37). These inconsistent results may reflect differences in participation measures.…”

Section: Discussioncontrasting

confidence: 83%

Correlates of participation in meaningful activities among people with multiple sclerosis

et al. 2015

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Objective To explore the associations between impairments, self-management self-efficacy, self-management behaviors, and environmental factors and their role in predicting participation in meaningful activities among people with multiple sclerosis. Design Online cross-sectional survey. Subjects/patients Randomly selected individuals (n = 335) from a large multiple sclerosis patient registry. Methods Participation in activities that are meaningful to the individual was measured with Community Participation Indicators (CPI), the dependent variable. Independent variables included symptom severity, activities of daily living limitations, cognitive problems, stages of change for physical activity, nutritional behaviors, self-efficacy, and environmental barriers. A backwards selection regression analysis was used to compare the relative contributions of independent variables in predicting the CPI. A path analysis was conducted to explore the associations between independent variables and their direct and indirect effects on the CPI. Results The final regression model included self-management self-efficacy (β = 0.12), environmental barriers (β = −0.16), cognitive problems (β = −0.22), and stages of change for physical activity (β = 0.12). Path analysis indicated that impairments and environmental barriers might negatively influence self-management self-efficacy. Self-management self-efficacy might have indirect effects on the CPI via engagement in self-management behaviors. Conclusion Future research should explore whether interventions that promote self-management self-efficacy can facilitate participation in meaningful activities.

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Section: Discussioncontrasting

confidence: 83%

Correlates of participation in meaningful activities among people with multiple sclerosis

et al. 2015

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“…This is consistent with earlier findings that fatigue and mobility were strongly related to lower levels of self-efficacy for participation in home-based activities similar to those assessed in the CIQ HC subscale. 17 Notably, numbness was also significantly positively related to HC; however, it does not seem accurate to call this an independent contribution given that numbness shows no significant relation to HC in bivariate analyses. It is only when other symptoms are included in the model that numbness shows a positive association with HC.…”

Section: Discussionmentioning

confidence: 94%

Cross-Sectional Examination of the Associations Between Symptoms, Community Integration, and Mental Health in Multiple Sclerosis

Kratz

Ehde

Hanley

et al. 2016

Archives of Physical Medicine and Rehabilitation

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Objective To determine the frequency and severity of eight symptoms in persons with multiple sclerosis (MS) and to examine the association between these symptoms and community integration and mental health. Design A cross-sectional survey that assessed eight symptoms (pain, fatigue, imbalance, numbness, weakness, shortness of breath, vision loss, and memory loss), disease progression (the self-report version of the Expanded Disability Status Scale; EDSS), community integration, and mental health. Setting Community. Participants 180 adults with self-reported MS who responded to a mailed survey. Interventions Not applicable. Main Outcome Measures The presence and intensity of symptoms were measured with a symptoms checklist. Community integration was assessed with the Community Integration Questionnaire and mental health was measured by the Mental Health Index of the Short Form Health Survey-36. Results The average number of symptoms reported was 5.07 (SD = 2.18). The most common symptoms - fatigue, weakness, and imbalance - were also rated as most severe. Not all symptoms were associated with level of disease progression or with MS subtype. Symptoms related to mobility were more likely to be associated with these variables. The eight symptoms as a whole accounted for significant amounts of variance (ranging from 13% to 21%) in measures of community integration and mental health, with specific symptoms made differential independent contributions to these measures. Conclusions This study demonstrates that most individuals with MS report a number of bothersome symptoms. Type of MS or level of progression does not tell the whole story regarding the impact of symptoms.

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“…(2) A second major problem identified by the participants in this study was the response format. Many response options are available, but it is important to note that the various response options may be measuring different dimensions of participation [26]. Initially, response options related to the term, satisfaction, were considered.…”

Section: Discussionmentioning

confidence: 99%

Developing a scale of communicative participation: A cognitive interviewing study

Yorkston

Baylor

Dietz

et al. 2008

Disability and Rehabilitation

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Problems identified related to candidate items included inadequate context, double-barreled or ambiguous items, redundancy, unclear or generally confusing items, infrequent situations, and cultural sensitivity. Participants preferred response options that asked them to rate interference rather than other dimensions such as satisfaction. CONCLUSIONS; Subtle differences in items and response options make key differences in how participants interpret and make decisions about their responses. Rich contextual information is needed in order to respond to items that sample communicative participation. Participants preferred response options that capture the barriers that they experience when participating in everyday communication situations.

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Measuring participation in people living with multiple sclerosis: A comparison of self-reported frequency, importance and self-efficacy

Cited by 35 publications

References 31 publications

Correlates of participation in meaningful activities among people with multiple sclerosis

Correlates of participation in meaningful activities among people with multiple sclerosis

Cross-Sectional Examination of the Associations Between Symptoms, Community Integration, and Mental Health in Multiple Sclerosis

Developing a scale of communicative participation: A cognitive interviewing study

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