Multiple Sclerosis Self-management Research Articles

Variables associated with patient activation in persons with multiple sclerosis

Identifying variables associated with patient activation in the multiple sclerosis population could serve to facilitate better multiple sclerosis self-management behaviors. Using a cross-sectional survey design, 199 participants were recruited from a multiple sclerosis center in the Southeastern United States. Depression, multiple sclerosis quality of life, and multiple Sclerosis self-efficacy were all significantly correlated with patient activation. Results of a hierarchical regression indicated that patient activation was significantly related to educational attainment, depression, and self-efficacy but not to quality of life. The results suggest several possible targets for intervention to increase patient activation, including health literacy, depression symptoms, and self-efficacy for multiple sclerosis disease management.

Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study

Background: Self-management is a process increasingly promoted for the management of long term conditions, both for ethical reasons of enhancing autonomy and for likely cost-effectiveness, but the nature and scope of self-management strategies are currently highly variable.Objective: To identify patients’, carers’ and clinicians’ current experiences of self-management in multiple sclerosis (MS) and their recommendations for the development of a future MS-specific self-management interventionMethods: Qualitative study using focus groups and semi-structured one-to-one interviews with a purposive sample. Three focus groups were held with 25 patients with moderate to advanced multiple sclerosis and 4 carers. Ten clinicians were interviewed. Data underwent thematic analysis.Results: Participants perceived multiple aspects of MS to be amenable to self-management, but identified a current lack of service provision to support their abilities to self-manage. Participants felt that to address both the physical and psychosocial challenges posed by MS required better information provision, a strong relationship with healthcare professionals and a toolkit of self-management skills. Participants expressed concern at the lack of consideration currently given to carers, which should be addressed in future provision.Conclusion: The diverse experiences of patients living with MS warrant a multidisciplinary, flexible and proactive approach to improve their self-management capabilities, acknowledging both patients’ and carers’ unmet needs. The findings can be used to guide the development of future self-management interventions specific to individuals with multiple sclerosis.

The role of exercise in modifying outcomes for people with multiple sclerosis: a randomized trial.

BackgroundDespite the commonly known benefits of exercise and physical activity evidence shows that persons Multiple Sclerosis (MS) are relatively inactive yet physical activity may be even more important in a population facing functional deterioration. No exercise is effective if it is not done and people with MS face unique barriers to exercise engagement which need to be overcome. We have developed and pilot tested a Multiple Sclerosis Tailored Exercise Program (MSTEP) and it is ready to be tested against general guidelines for superiority and ultimately for its impact on MS relevant outcomes. The primary research question is to what extent does an MS Tailored Exercise Program (MSTEP) result in greater improvements in exercise capacity and related outcomes over a one year period in comparison to a program based on general guidelines for exercise among people with MS who are sedentary and wish to engage in exercise as part of MS self-management.Methods/DesignThe proposed study is an assessor-blind, parallel-group, randomized controlled trial (RCT). The duration of the intervention will be one year with follow-up to year two. The targeted outcomes are exercise capacity, functional ambulation, strength, and components of quality of life including frequency and intensity of fatigue symptoms, mood, global physical function, health perception, and objective measures of activity level. Logistic regression will be used to test the main hypothesis related to the superiority of the MSTEP program based on a greater proportion of people making a clinically relevant gain in exercise capacity at 1 year and at 2 years, using an intention-to-treat approach. Sample size will be 240 (120 per group).DiscussionThe MS community is clearly looking for interventions to help alleviate the disabling sequelae of MS and promote health. Exercise is a well-known intervention which has known benefits to all, yet few exercise regularly. For people with MS, the role of exercise in MS management needs to be rigorously assessed to inform people as to how best to use exercise to reduce disability and promote health.Trial registrationClinical Trials.gov: NCT01611987

Clinician's Commentary on Ploughman et al.

Clinician's Commentary on Ploughman et al.

The Path to Self-Management: A Qualitative Study Involving Older People with Multiple Sclerosis

This qualitative study sought to explore older people's experience of ageing with multiple sclerosis (MS) and to describe the natural history of self-management from their points of view. Eighteen people over age 55 and living with MS for at least 20 years were recruited from an MS clinic and rehabilitation outpatient records. Interviews (60-80 min), using open-ended questions, explored participants' lifelong experiences of MS. Following interview transcription, data were coded and analyzed; themes, subthemes, and their relationships were described based on consensus. Participants recounted their diagnosis process, their life experience with MS, and how they eventually accepted their disease, adapted, and moved toward self-management. The findings included vivid descriptions of social relationships, health care interactions, overcoming barriers, and the emotions associated with living with MS. A conceptual model of phases of self-management, from diagnosis to integration of MS into a sense of self, was developed. Study participants valued self-management and described its phases, facilitators, and inhibitors from their points of view. Over years and decades, learning from life experiences, trial and error, and interactions with health care professionals, participants seemed to consolidate MS into their sense of self. Self-determination, social support, strong problem-solving abilities, and collaborative relationships with health professionals aided adaptation and coping. Findings from this study make initial steps toward understanding how MS self-management evolves over the life course and how self-management programmes can help people with MS begin to manage wellness earlier in their lives.

Perspectives on Self-Management in Multiple Sclerosis

The aim of this study was to elucidate the experience of self-management among people with multiple sclerosis (MS) and gather their input to inform a self-management intervention. Twelve people with MS participated in focus groups in which they were asked open-ended questions about MS symptoms, challenges, overcoming challenges, symptom management, and treatment preferences. The results suggest four major themes: 1) "The Everyday Experience of MS," including comments about symptoms and their impact on functioning; 2) "Motivation for Self-Management," including descriptions of motivation originating from physical necessity, success with other management techniques, and external sources; 3) "Coping Strategies and Skills," including descriptions of changing behaviors, expanding social support networks, finding resources, utilizing medical treatment, and monitoring symptoms; and 4) "Vision for a Self-Management Intervention," including suggestions that an intervention be individualized, be motivating, and provide resources. The results of this study can inform the design and implementation of self-management interventions. Experiences described by participants are consistent with other qualitative reports suggesting the active role people with MS play in managing their condition. Intervention approaches must consider the complex constellation of symptoms associated with MS and provide individualized treatments that enhance the person's ability to manage their symptoms, barriers presented by such symptoms, and their health care.

Factors influencing healthy aging with multiple sclerosis: a qualitative study

Purpose: The purpose of this study was to describe the factors influencing healthy aging from the perspective of the older person with multiple sclerosis (MS) in order to build curricula for MS self-management programs. Method: We sourced participants, older than 55 years with MS for more than 20 years, from a database of MS clinic and outpatient rehabilitation visits. Recruitment continued until data saturation was reached (n = 18). Semi-structured interviews explored perspectives on aging and health and lifestyle habits. Demographic, lifestyle and perceived health status information was also gathered. We analyzed the transcribed text for themes and theme relationships. Results: Work and social engagement, effective and accessible health care, healthy lifestyle habits, and maintaining independence at home were found to be critical proximal factors for healthy aging. The presence of financial flexibility, social support, cognitive and mental health, and resilience provided a supporting foundation to these critical proximal factors. These factors comprised a two-tiered model of healthy aging with MS. Conclusions: This two-tiered conceptual model of health aging, based on the perspectives of older persons with MS, provides a potential framework for the development of MS self-management program curricula aimed at optimizing quality of life. Further empirical testing may validate its utility in predicting healthy aging with MS.Implications for RehabilitationThe views of older people with Multiple Sclerosis (MS), as experts in managing the long term challenges of living with MS, should be considered in the design of self-management programs.Health care, social engagement, lifestyle and independence make critical contributions to health-related quality of life among older people with MS.This contribution depends on less-commonly addressed factors: financial flexibility, mental and cognitive health, resilience and social support.Strategies that target factors are important components of a comprehensive approach to rehabilitation and self-management of MS.

The Multiple Sclerosis Self-Management Scale: Revision and psychometric analysis.

The Multiple Sclerosis Self-Management scale (MSSM) was developed to provide a multidimensional and psychometrically sound assessment of self-management knowledge and behavior among adults with multiple sclerosis (MS). This article describes recent revisions to the scale and presents the results of subsequent analyses of the factor structure and psychometric adequacy of the revised MSSM. Participants were 197 adults with MS randomly selected from mailing lists of 3 chapters of the National Multiple Sclerosis Society. Participants completed mailed questionnaires including the MSSM and several additional instruments measuring constructs associated with self-management. Factor analysis of the revised MSSM revealed 5 psychometrically sound factors. Construct validity was supported by factor analysis and correlation of the MSSM with constructs related to self-management. Specifically, the MSSM was significantly positively correlated with MS self-efficacy and quality of life ratings, and significantly negatively correlated with psychological and physical impact of MS, as measured with the Multiple Sclerosis Impact Scale. Internal consistency reliability for the scale was acceptable (α = .85). The MSSM, as revised, is a brief, psychometrically sound, and multidimensional self-management scale for research and clinical applications.

Promoting self-management of multiple sclerosis in primary care

This article discusses the impact of multiple sclerosis on people newly diagnosed and those living with this long-term condition. It highlights the role that primary care nurses can play in ensuring that people with the condition have the help and information they need to take charge of their own care.

Psychosocial Factors That Influence Quality of Life and Potential for Self-Management in Multiple Sclerosis

Optimizing quality of life (QOL) and self-management in people with multiple sclerosis (MS) is increasingly seen as a worthwhile goal. This study aimed to investigate factors that affect QOL in MS. A large national sample of Australians with MS (n = 1848) generated from the Australian Multiple Sclerosis Longitudinal Study completed a survey addressing disease duration and severity, self-efficacy, depression, perceived stress, social support, QOL, and self-management. We tested a model of self-help in which antecedent variables are influenced by mediating variables, which in turn affects outcome variables. In the current study, the antecedent variables were disease duration and disease severity; the mediating variables were self-efficacy, depression, perceived stress, and social support; and the outcome variables were QOL and self-management. We also tested the hypothesis that disease severity, depression, and perceived stress would correlate inversely with QOL and potential for self-management, whereas self-efficacy and perceived level of social support would correlate positively with QOL and potential for self-management. The results indicated that the antecedent variables did not correlate with the mediating variables, with one exception: a negative correlation was found between disease severity and social support. No correlations were found between social support and QOL or self-management. However, significant correlations were found between depression, self-efficacy, stress, and social support and QOL. No correlations were found between either the antecedent or the mediating variables and self-management. The results confirm previous findings of statistically significant correlations between psychosocial factors and QOL.

Self-Management, Perceived Control, and Subjective Quality of Life in Multiple Sclerosis

Self-management has been shown to increase perceived control over both illness and nonillness aspects of life among people with chronic conditions but has not received significant research attention among persons with multiple sclerosis (MS). Based on relationships proposed in the illness intrusiveness and disability centrality models, this study explored the relationships between subjective and objective measures of MS impact, self-management, perceived control, and subjective quality of life (SQOL). A sample of 157 adults with MS participated in this research. The results suggest that self-management is strongly associated with perceived control and that both perceived control and self-management mediate the relationship between MS impact and SQOL. The rehabilitation counseling implications of these findings are discussed.

Exercise and multiple sclerosis: Have we come full circle?

This article reviews the current strategies for health promotion and physical activity in people with multiple sclerosis (MS) and compares them to strategies from the 1970s and 1980s and as far back as 1948. It also looks at the use of self-efficacy theory and its relevance to self-management of MS and what resources are available to the health professional and people with MS.

Exercise and multiple sclerosis: Have we come full circle?

This article reviews the current strategies for health promotion and physical activity in people with multiple sclerosis (MS) and compares them to strategies from the 1970s and 1980s and as far back as 1948. It also looks at the use of self-efficacy theory and its relevance to self-management of MS and what resources are available to the health professional and people with MS.

Shared decision making and selfmanagement in multiple sclerosis – a consequence of evidence

Shared decision making is increasingly recognised as the ideal model of patient-physician communication especially in chronic diseases with partially effective treatments such as multiple sclerosis (MS). Since 2001, we studied prerequisites for patient participation in decision making as well as the effects of evidence-based patient information on decision making processes in MS. In pre-studies we found that 80% of MS patients demand autonomous roles in treatment decisions which contrasts to a poor knowledge of risks. On the other hand MS patients are not disturbed by evidence-based, balanced complex information. MS patients can understand this kind of information and are able to transfer new abilities to other situations. Major information interests were related to symptom alleviation, diagnostic procedures and prognosis. Currently, we study the effects of a 4 hour education programme on relapse management versus an information leaflet as controls in 150 RR MS patients in a randomised-controlled trial. In a second trial including 280 MS patients we study the effects of an evidence-based decision aid on immunotherapy on decisional role preference and performance in the patient physician encounter. Results at the end of 2006 will show to which extent patient education with a focus on evidence-based patient information influences participation in the decision making process. Assuming that patient education programmes will enhance self-management abilities and the sense of control over the disease with enhanced quality of life and well-being, further modules covering all aspects of MS are to be developed.

A Comparative Study of Self-Efficacy in Men and Women with Multiple Sclerosis

The purpose of this study was to examine if there was a difference in the level of self-efficacy between men and women with relapsing-remitting multiple sclerosis (RRMS) and progressive forms of multiple sclerosis (MS). A quantitative, descriptive, comparative design was used. The convenience sample included 556 individuals with MS, of which 124 were men (73 RRMS and 51 progressive MS) and 432 women (348 RRMS and 84 progressive MS). Participants completed the Multiple Sclerosis Self-Efficacy Scale (MSSE). This study found gender differences in self-efficacy among those living with MS. The women had a significantly greater belief in their ability to function with MS. The women also had a greater belief in their ability to control their MS than the men, although the difference was not significant. This study also found significant differences in self-efficacy between those with RRMS and those with progressive forms of MS. When men were compared by type of MS, those with RRMS had significantly greater belief in their ability to control their disease and function with it than those with progressive forms of MS. For women, those with RRMS had significantly greater belief in their ability to control their MS and function with it than women with progressive forms of MS. Individuals with MS could benefit from strategies that enhance self-efficacy. Such strategies include providing skills for self-management of MS, providing education and support of the patient and family, introducing the patient to a role model with MS, encouraging physical reconditioning, and referring to a support group that will meet individualized needs.

Development and Initial Analysis of Multiple Sclerosis Self-Management Scale

This article describes the development and initial psychometric analysis of the Multiple Sclerosis Self-Management Scale (MSSM). The scale was developed to provide a comprehensive and psycho-metrically sound assessment of self-management knowledge and practices among adults with multiple sclerosis (MS). Items were developed based on a review of the MS and self-management literature and professional consultation. The scale was refined after pilot testing, and the reliability, validity, and factor structure of the refined scale were then assessed in a sample of 266 adults with MS. Construct validity was supported by factor analysis and correlation of MSSM with other constructs known to be related to self-management. Specifically, MSSM was significantly positively correlated with quality-of-life ratings and significantly negatively correlated with psychological and physical impact of MS, as measured with the Multiple Sclerosis Impact Scale. Internal consistency reliability for the scale was acceptable (α = .86). Factor analysis confirms a seven-factor model for MSSM, with subscales that measure several important components of self-management in MS. Additional research with MSSM is ongoing, but initial results suggest that the measure may be useful in both research and clinical applications.