Multiple Sclerosis Self-management Research Articles

Quality of reporting health behaviors for multiple sclerosis (QuoRH-MS): A scoping review to inform intervention planning and improve consistency of reporting.

Multiple sclerosis (MS) is a neurological condition that necessitates a multidisciplinary approach to aid those living with MS in managing their disease. Health behavior, or lifestyle modification, is an emerging approach to MS self-management. MS researchers utilize measurement tools to ensure that interventions are best suited to the outcomes, thereby potentially influencing practice. The aim of this study was to investigate which tools are being used for health behavior management studies in people living with MS and develop an aid for tool selection. A scoping review guided by the PRISMA-Sc checklist and the JBI manual for evidence synthesis was employed with a systematic search strategy executed across four scientific databases: Medline, PubMed, CINAHL, and Cochrane Libraries. The types of assessment tools used were extracted from the included studies. Each tool was categorized into the health behavior intervention discipline (nutrition, exercise, and psychology) and then subcategorized by the tool's purpose. The frequency of use was determined for each tool. Reporting of validation of the assessment tools were collated to inform a tool selection checklist. The review identified a total of 248 tools (12 nutrition, 55 exercise, and 119 psychology unique reports) from 166 studies. Seventy-seven multidimensional tools were identified including measures of quality of life, fatigue, and functional scales. Only 88 studies (53%) referred to the validity of the tools. The most commonly reported tools were the dietary habits questionnaire (n=4, nutrition), 6-minute walk test (n=17, exercise), Symbol Digits and Modalities Test, and Hospital Anxiety and Depression Scale (n=15 each, psychology) with the Expanded Disability Status Scale reported 43 times. Evidence from interventions may inform practice for health professionals. This review provides insights into the range of tools reported across health behavior intervention studies for MS and offers a guide toward more consistent reporting of study methods.

Evaluation of the COVID-19-induced anxiety role in the self-management of multiple sclerosis (MS) patients

Evaluation of the COVID-19-induced anxiety role in the self-management of multiple sclerosis (MS) patients

Predicting physical activity for people with multiple sclerosis: The role of exercise-related cognitive errors.

Multiple sclerosis (MS) is a neurological disease that is chronic, progressive characterized by symptoms of relapsing fatigue and pain. Despite evidence supporting the use of physical activity (PA) for MS symptom management, low rates of PA participation are observed. Previous research suggests exercise-related cognitive errors (ECEs) can deter and decrease PA participation. The purpose of this study was to examine whether ECEs and self-regulatory efficacy for MS symptom control predict important behavior-related outcomes for MS self-management (dependent variables: PA, maladaptive behavioral responses to illness, and perceived walking impairment). Adults with MS (N = 110; aged 18 and over, with a patient-determined disease steps score of six or less) completed the following validated questionnaires: ECEs, MS symptom control self-efficacy, self-report moderate to vigorous physical activity, behavioral responses to illness, and perceived walking impairment. ECEs significantly predicted behavioral responses to illness (β = .459, p < .01) and perceived walking impairment (β = .279, p < .01). The interaction between ECEs and self-regulatory efficacy significantly predicted all three dependent variables (βs ranged from .155 to .263, ps < .05). This is the first study to demonstrate associations between ECEs and different illness- and mobility-related perceptions for persons with MS. Findings suggested that self-regulatory efficacy to manage MS symptoms varied based on low, moderate, or high levels of ECEs. Disability status is not easily modifiable; targeting social cognitions, like self-regulatory efficacy or ECEs, may be a promising way to promote PA for MS self-management. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Decisional Conflict Regarding Disease-Modifying Treatment Choices Among Patients with Mid-Stage Relapsing-Remitting Multiple Sclerosis.

Shared decision-making is critical in multiple sclerosis (MS) due to the uncertainty of the disease trajectory over time and the large number of treatment options with differing efficacy, safety and administration characteristics. The aim of this study was to assess patients' decisional conflict regarding the choice of a disease-modifying therapy and its associated factors in patients with mid-stage relapsing-remitting multiple sclerosis (RRMS). A multicenter, non-interventional study was conducted. Adult patients with a diagnosis of RRMS (2017 revised McDonald criteria) and disease duration of 3 to 8 years were included. The level of uncertainty experienced by a patient when faced with making a treatment choice was assessed using the 4-item Decisional Conflict Scale. A battery of patient-reported and clinician-rated measures was administered to obtain information on symptom severity, illness perception, illness-related uncertainty, regret, MS knowledge, risk taking behavior, preferred role in the decision-making process, cognition, and self-management. Patients were recruited during routine follow-up visits and completed all questionnaires online using electronic tablets at the hospital. A multivariate logistic regression analysis was conducted. A total of 201 patients were studied. Mean age (Standard deviation) was 38.7 (8.4) years and 74.1% were female. Median disease duration (Interquartile range) was 6.0 (4.0-7.0) years. Median EDSS score was 1.0 (0-2.0). Sixty-seven (33.3%) patients reported a decisional conflict. These patients had lower MS knowledge and more illness uncertainty, anxiety, depressive symptoms, fatigue, subjective symptom severity, a threatening illness perception, and poorer quality of life than their counterparts. Lack of decisional conflict was associated with MS knowledge (Odds ratio [OR]=1.195, 95% CI 1.045, 1.383, p=0.013), self-management (OR=1.049, 95% CI 1.013, 1.093, p=0.018), and regret after a healthcare decision (OR=0.860, 95% CI 0.756, 0.973, p=0.018) in the multivariate analysis. Decisional conflict regarding the selection of a disease-modifying therapy was a common phenomenon in patients with mid-stage RRMS. Identifying factors associated with decisional conflict may be useful to implement preventive strategies that help patients better understand their condition and strengthen their self-management resources.

The psychometric properties of the Persian version of the Multiple Sclerosis Self-Management Scale-Revised: A cross-sectional methodological study.

Patients with multiple sclerosis (pwMS) need self-management (SM) skills to manage their symptoms and problems. An essential step to SM improvement is accurate SM assessment using valid and reliable instruments. The aim of this study was to evaluate the psychometric properties of the Persian version of the Multiple Sclerosis Self-Management Scale-Revised (MSSMS-R). This cross-sectional methodological study was conducted from December 2021 to June 2022. The face, content, and construct‎ validity of MSSMS-R were evaluated. Construct validity was evaluated through confirmatory factor analysis (CFA) and evaluating convergent and discriminant‎ validity using the data obtained from 210 randomly selected MS patients. The reliability of the scale was also evaluated through the test-retest stability and the internal consistency evaluation methods. The face validity was confirmed and the content validity ratio and index values of all items were more than 0.62 and 0.79, respectively. CFA revealed the acceptable construct validity of the scale after omitting items 21 and 22. In convergent and discriminant validity evaluation, the total score of MSSMS-R had significant positive correlation with the total mean scores of the Multiple Sclerosis Self-Efficacy Scale (r = 0.36; p < 0.001) and the physical health composite‎ (r = 0.31; p < 0.001) and the mental health composite‎ (r = 0.39; p < 0.001) dimensions of the 54-item Multiple Sclerosis Quality of Life scale ‎and significant inverse correlation with the total mean score of the Beck Depression Inventory (r = -0.28; p < 0.001). The Cronbach's alpha values of the scale and its subscales were 0.86 and 0.65-0.90 and their test-retest intraclass correlation coefficients were 0.97 and 0.95-0.99, respectively. The Persian MSSMS-R is a valid and reliable scale and can be used in future studies for SM assessment among pwMS.

Self-efficacy trajectories of individuals newly diagnosed with multiple sclerosis.

The first year following a new multiple sclerosis (MS) diagnosis may be a critical time for individuals as they learn to manage their disease. Effective self-management of MS likely requires healthy self-efficacy levels, yet little is known about self-efficacy in the postdiagnosis period. This study aims to improve our understanding of self-efficacy in individuals newly diagnosed with MS by examining self-efficacy trajectories and identifying patient characteristics associated with trajectories in the first postdiagnosis year. Newly diagnosed adults with MS/clinically isolated syndrome (CIS) (N = 230) completed a battery of questionnaires, including the University of Washington Self-Efficacy Scale, at 1, 2, 3, 6, 9, and 12 months, postdiagnosis. Sankey diagrams characterized self-efficacy trajectories and a multiple regression model tested patient characteristics as predictors of self-efficacy change scores. Mean self-efficacy T-scores ranged from 50.79 to 52.04 (SD = 9.40 and 10.12, respectively) across the postdiagnosis year. MS diagnosis (vs. CIS), higher disability levels, and higher MS symptom severity were associated with lower self-efficacy levels at baseline. Baseline symptom severity predicted change in self-efficacy levels from baseline to month 12 (B = -0.05, p = .030). Self-efficacy remains relatively stable in the first year following a MS diagnosis, though high symptom severity is associated with decreased self-efficacy at 12-months postdiagnosis. Clinical characteristics (e.g., MS diagnosis, disability level) also appear to play a role in setting the course of self-efficacy in this postdiagnosis year. Timely interventions that enhance self-efficacy and/or improve certain clinical characteristics may promote healthy self-management of MS that carries forward in disease course. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Experiences of health tracking in mobile apps for multiple sclerosis: A qualitative content analysis of user reviews.

Mobile health applications (apps) are promising condition self-management tools for people living with multiple sclerosis (MS). However, most existing apps do not include health tracking features. This gap has been raised as a priority research topic, but the development of new self-management apps will require designers to understand the context and needs of those living with MS. Our aim was to conduct a content analysis of publicly available user reviews of existing MS self-management apps to understand desired features and guide the design of future apps. We systematically reviewed MS self-management apps which were publicly available in English on the Google Play and iOS app stores. We then conducted sentiment and content analysis of recent user reviews which referenced health tracking and data visualization to understand self-reported experiences and feedback. Searches identified 75 unique apps, of which six met eligibility criteria and had reviews. One hundred and thirty-seven user reviews of these apps were eligible, though most were associated with a single app (n=108). Overall, ratings and sentiment scores skewed highly positive (Median [IQR]: Ratings - 5 [4-5], Sentiment scores - 0.70 [0.44-0.86]), though scores of individual apps varied. Content analysis revealed five themes: reasons for app usage, simple user experience, customization and flexibility, feature requests, and technical issues. Reviewers suggested that app customization, interconnectivity, and consolidated access to desired features should be considered in the design of future apps. User ratings weakly correlated with review sentiment scores (ρ=0.27 [0.11-0.42]). Self-tracking options in MS apps are currently limited, though the apps that offer these functions are considered useful by individuals with MS. Additional qualitative research is required to understand how specific app features and opportunities for personalization should be incorporated into new self-management tools for this population.

Association between Perceived Social Support and Self-management in People with Multiple Sclerosis

Introduction: The physiological and psychological limitations resulting from multiple sclerosis (MS) can decrease social interactions. Furthermore, self-management has become popular in the control of chronic diseases such as MS. The purpose of this study was to determine the relationship between perceived social support and self-management in MS patients. Methods: This cross-sectional study was conducted for the years 2019–2020. Patients were recruited through the MS clinic located in Kashani Hospital, Isfahan, Iran, by convenience sampling. The research was performed on a group of 212 MS patients who completed a Medical outcome study social support scale (MOS-SSS), the MS Self-Management Scale, and basic clinical and demographic data. SPSS 20 software was used to analyze the collected data. Results: The study sample included 57 men and 155 women (73.1%). Examining the relationship between perceived social support and self-management revealed a strong correlation between them (r 2 = 0.60, P &lt; 0.001). The results of regression analysis showed that self-management in people with academic education was statistically significantly greater than in those without (b [Standard Error] = 6.83 [2.58], P = 0.009). Furthermore, the amount of perceived social support was increasing significantly for females in comparison to males (b [SE] = 6.04 [1.58], P = 0.03). Moreover, the mean of perceived social support was greater between married (b [SE] = 3.31 [1.56], P = 0.007) people and also between academic (b [SE] = 7.43 [3.56], P = 0.03) MS patients. Conclusion: The results of this study indicated that social support was associated with self-management in MS patients. This understanding should be applied in clinical practice when targeting and designing education, support, and care for MS patients.

A mobile app (IDoThis) for multiple sclerosis self-management: development and initial evaluation

BackgroundMultiple sclerosis (MS) is one of the most common neurological disorders worldwide, and self-management is considered an essential dimension in its control. This study aimed to develop an evidence-based mobile application for MS self-management and evaluate it.MethodsThis study was undertaken in three phases: content preparation, design, and evaluation. In the content preparation phase, the researchers extracted MS self-management needs based on related guidelines and guides, existing apps on the self-management of MS, and the field experts' views and confirmation. The design phase was conducted in five steps: defining app functionalities, depicting the wireframe, preparing the media, coding the app, and testing the app’s performance. The app was developed using the Android Studio environment and Java programming language for the Android operating system. The performance of the developed app was tested separately in several turns, and existing defects were corrected in each turn. Finally, after using the app for three weeks, the app was evaluated for its short-term impact on MS management and user-friendliness using a researcher-constructed questionnaire from participants’ (N = 20) perspectives.ResultsThe IDoThis app is an offline app for people with MS that includes five main modules: three modules for training or informing users about different aspects of MS, one module for monitoring the user's MS condition, and a reporting module. In the initial evaluation of the app, 75% (n = 15) of participants mentioned that using this app improved MS self-management status at intermediate and higher levels, but 25% (n = 5) of the participants mentioned that the effect of using the app on the self-management tasks was low or was very low. The majority of users rated the user-friendliness of the app as high. The users found the sections “exercises in MS” and “monitoring of MS status” beneficial to their self-management. Still, the fatigue and sleep management sections are needed to meet users' expectations.ConclusionUsing IDoThis app as a self-management tool for individuals with MS appears feasible, that can meet the need for a free and accessible self-management tool for individuals with MS. Future directions should consider the users’ fatigue and sleep management expectations.

MSmonitor-plus program and video calling care (MPVC) for multidisciplinary care and self-management in multiple sclerosis: study protocol of a single-center randomized, parallel-group, open label, non-inferiority trial

BackgroundWe designed a new multi-modal version of the MSmonitor, called the MSmonitor-Plus and Video calling Care (MPVC), a self-management and education program with e-health interventions that combines frequent use of specific questionnaires with video calling in treating multiple sclerosis (MS) patients.ObjectiveTo assess the effectiveness, cost-effectiveness and feasibility of MPVC compared to care as usual (CAU), with the goal of achieving equal or better quality of life for MS patients and their partners/informal caregivers.Our hypothesis is that by using MPVC, monitoring will become more efficient, that patients’ self-efficacy, quality of life, and adherence to treatment will improve, and that they will be able to live their lives more autonomously.MethodsA randomized, parallel-group, open label, non-inferiority trial will be conducted to compare MPVC with CAU in MS patients and their partners/informal caregivers. A total of 208 patients will be included with follow-up measurements for 2 years (at baseline and every 3 months). One hundred four patients will be randomized to MPVC and 104 patients to CAU. Partners/informal caregivers of both groups will be asked to participate.The study will consist of three parts: 1) a clinical effectiveness study, 2) an economic evaluation, and 3) a process evaluation. The primary outcome relates to equal or improved disease-specific physical and mental quality of life of the MS patients. Secondary outcomes relate to self-efficacy, efficiency, cost-effectiveness, autonomy, satisfaction with the care provided, and quality of life of partners/informal caregivers.DiscussionThe idea behind using MPVC is that MS patients will gain more insight into the individual course of the disease and get a better grip on their symptoms. This knowledge should increase their autonomy, give patients more control of their condition and enable them to better and proactively interact with health care professionals.As the consulting process becomes more efficient with the use of MPVC, MS-related problems could be detected earlier, enabling earlier multidisciplinary care, treatment or modification of the treatment. This could have a positive effect on the quality of life for both the MS patient and his/her partner/informal caregiver, reducing health and social costs.Trial registrationNCT05242731 Clinical Trials.gov. Date of registration: 16 February 2022 retrospectively registered.

The effect of cognitive performance on self-management behavior of multiple sclerosis patients

BackgroundDifficulties of self-management in people with MS (pwMS) is considered as one of the most important factors contributing to low rehabilitation efficacy, more severe long-term complications and increase in healthcare costs. Despite the emergence of research in the last decade documenting causes, types, and course of cognitive difficulties in MS disease subtypes, limited evidence is available in the literature for direct comparison of self-management and cognitive deficits. In this study we aimed to investigate the relationship between cognitive performance and self-management in pwMS. MethodsPwMS who applied to neurology out-patient clinics of seven different centers were included into study. Multiple Sclerosis Self-Management Scale- Revised (MSSM-R) was used for the assessment of self-management behaviors and Multiple Sclerosis inventory cognition scale (MUSIC) was used for the assessment of cognitive performance and fatigue. ResultsIn this study, 194 (144 female and 50 male) pwMS participated (mean age = 38.9 years). The course of the disease was RRMS in 173 patients and mean EDSS was 2.0. 68.5% of the participants were married, 32.5% were employed, and 57.2% had secondary education. The MSSM-R mean score of the study group was 42.6 ± 10.4 (1–81). There was a positive correlation between MSSM-R and MUSIC-cog scores (r = 0.21, p = 0.003). A hierarchical multiple regression revealed that income level (β = 0.196, t = 2.692, p = 0.008) and cognitive performance (β = 0.167, t = 2.063, p = 0.041) together with control variables (gender, age, educational status, employment status, duration of disease, EDSS and fatigue) explained 5.5% of the variance in self-management. ConclusionCognitive performance is a predictor of self-management in pwMS. Better self-management behavior is also related with employment and income level in pwMS. Studies evaluating patients' cognitive abilities and evaluating the effectiveness of adapted self-management training programs are needed.

Personality and its association with self-management in multiple sclerosis

BackgroundIn a healthcare system which aims to empower the patient, self-management becomes increasingly important. In Multiple Sclerosis, an effective self-management is associated with various favorable health-related outcomes like improvement in quality of life, the reduction of depression and anxiety symptoms, and reduced healthcare costs. This study investigates the association between the Big Five personality traits and self-management including activity in self-help groups. MethodsPeople with MS were recruited via several paths within Germany (e.g. medical practices, social events and the German MS society). The final study sample consisted of 682 participants who answered a multidimensional questionnaire. This comprised the Big-Five-Inventory-10 for personality, the Health Education Impact Questionnaire (heiQ) for self-management competencies, questions for participation in self-help groups, and socio-demographic and clinical variables. ResultsMultivariate regression analyses showed that personality could explain a greater amount of variance of self-management than socio-demographic and clinical variables. Neuroticism was the strongest predictor and correlated negatively with all heiQ-dimensions of self-management. In contrast, in logistic regression analysis none of the Big Five traits became significant in predicting the activity in self-help groups. ConclusionAs expected, personality plays an important role regarding self-management. Ideally, a time-saving personality assessment should be considered in routine clinical practice to identify patients at risk; however, at a minimum, personality traits should be considered in consultations with their neurologists. They may need help to understand the benefits of effective self-management and should receive support to improve their self-management skills and to reduce their neuroticism to lower the risk of secondary complications.

Development of a Japanese Version of the Multiple Sclerosis Self-Management Scale-Revised

Development of a Japanese Version of the Multiple Sclerosis Self-Management Scale-Revised

Self-management in Multiple Sclerosis (MS): Comparing Perceptions of Need Between People with MS, Carepartners, and MS Providers

<h3>Research Objectives</h3> People with Multiple Sclerosis (MS) face challenges managing complex symptoms and navigating daily life. Self-management interventions (SMIs) may help, but research is lacking on the perceived need for SMIs and how perceptions may differ between people with MS (PwMS), carepartners, and MS providers. This exploratory study: 1) determines the need for an MS SMI; 2) identifies similarities and differences in perceived need between PwMS, carepartners, and providers; and 3) generates ideas to inform future self-management research. <h3>Design</h3> A qualitative, exploratory study using focus group (FG) methodology with PwMS (3 FGs), carepartners (1 FG), and medical and rehabilitation MS providers (2 FGs). FGs were audio-recorded, transcribed, then analyzed using the Collaborative Qualitative Analysis approach. Setting: A comprehensive MS care center in urban, southern USA. <h3>Participants</h3> Participants represent a convenience sample of 16 PwMS, 4 carepartners, 6 medical providers, 10 rehabilitation providers. <h3>Interventions</h3> Not applicable. <h3>Main Outcome Measures</h3> The FG moderator's guide included questions about: 1) priority MS symptoms; 2) barriers and facilitators to self-managing MS; 3) MS self-management strategies; 4) program and resource gaps. <h3>Results</h3> Results confirm that PwMS experience self-management challenges. PwMS and carepartner FGs revealed similar findings related to barriers and facilitators to self-managing MS and agreed that an SMI would be beneficial. While providers also agreed an MS SMI is needed, there were differences between groups in relation to barriers to self-management. Specifically, societal perceptions/stigma and the built environment were identified by PwMS as barriers, but not providers. PwMS also discussed the importance of alternative therapies and wellness activities, not discussed similarly by all provider types. <h3>Conclusions</h3> PwMS may benefit from SMIs. Obtaining input from PwMS, their carepartners and providers provides a holistic picture of the barriers to self-management that can inform content development. <h3>Author(s) Disclosures</h3> None.

Risk factors for peripartum depression in women with multiple sclerosis

Background: Peripartum depression (PPD) is underexplored in multiple sclerosis (MS). Objective: To evaluate prevalence of and risk factors for PPD in women with MS. Methods: Retrospective single-center analysis of women with MS with a live birth. Prevalence of PPD was estimated with logistic regression with generalized estimating equations (GEE). GEE evaluated predictors of PPD (e.g. age, marital status, parity, pre-pregnancy depression/anxiety, antidepressant discontinuation, sleep disturbance, breastfeeding, relapses, gadolinium-enhancing lesions, and disability). Factors significant in univariable analyses were included in multivariable analysis. Results: We identified 143 live births in 111 women (mean age 33.1 ± 4.7 years). PPD was found in 18/143 pregnancies (12.6%, 95% CI = 7.3–17.8). Factors associated with PPD included older age (OR 1.16, 95% CI = 1.03–1.32 for 1-year increase), primiparity (OR 4.02, CI = 1.14–14.23), pre-pregnancy depression (OR 3.70, CI = 1.27–10.01), sleep disturbance (OR 3.23, CI = 1.17–8.91), and breastfeeding difficulty (OR 3.58, CI = 1.27–10.08). Maternal age (OR 1.17, CI = 1.02–1.34), primiparity (OR 8.10, CI = 1.38–47.40), and pre-pregnancy depression (OR 3.89, CI = 1.04–14.60) remained significant in multivariable analyses. Relapses, MRI activity, and disability were not associated with PPD. Conclusion: The prevalence of PPD in MS appeared similar to the general population, but was likely underestimated due to lack of screening. PPD can affect MS self-management and offspring development, and prospective studies are needed.

Psychometric Validation of a Simplified Version of the Multiple Sclerosis Self-Management Scale

PurposeThe purpose of this study was to evaluate the measurement structure of a simplified version of the Multiple Sclerosis Self-Management Scale (MSSMS) in a sample of 256 individuals with multiple sclerosis (MS).MethodsExploratory factor analysis was utilized to uncover meaningful and interpretable factors.ResultsThe study yielded three factors as both meaningful and interpretable (medication compliance, MS knowledge, and health maintenance behavior). These factors are reliable and correlated with functional disability and community participation in the theoretically expected directions.ConclusionResults show the MSSMS to be a promising rehabilitation assessment tool for individuals with MS and rehabilitation counselors to evaluate self-management support needs in the interview, assessment, and rehabilitation planning protocols.

What Biopsychosocial Factors Explain Self-management Behaviors in Multiple Sclerosis? The Role of Demographics, Cognition, Personality, and Psychosocial and Physical Functioning

ObjectivesTo examine the biopsychosocial correlates of overall and individual self-management behaviors in persons with multiple sclerosis (MS), including demographics, co-occurring medical diagnoses, cognition, personality traits, and psychosocial and physical functioning as variables. DesignProspective cross-sectional cohort study. SettingCommunity-based comprehensive MS center. ParticipantsAdults with MS (n=112) who completed a brief neuropsychological battery that included a self-report survey and performance-based measures of cognitive function. InterventionsNot applicable. Main Outcome MeasuresThe MS Self-management Scale–Revised total score was the primary outcome and its 5 subscales (Healthcare Provider Relationship/Communication, Treatment Adherence/Barriers, Social/Family Support, MS Knowledge and Information, Health Maintenance Behaviors) were secondary outcomes. ResultsDisease-modifying therapy usage (β=0.39), social support (β=0.31), subjective prospective memory (β=−0.25), emotional well-being (β=0.20), and histories of diabetes (β=−0.18) and high cholesterol (β=0.15) were significantly associated with overall self-management in a multivariate model. Correlates of individual self-management behaviors are also described. ConclusionsThe findings provide insights into the biopsychosocial characteristics contributing to the overall and individual self-management behaviors of persons with multiple sclerosis. The next steps will be to evaluate these factors in a clinical intervention.

A Smartphone-based Application for Self-Management in Multiple Sclerosis.

Background Multiple sclerosis (MS) is a chronic inflammation of the central nervous system and self-management is necessary for MS patients. The purpose of the present study was to develop a smartphone-based application for self-management in multiple sclerosis. Methods This research was conducted in two phases. In the first phase, users' requirements were investigated by using a questionnaire. The participants were 120 MS patients and six neurologists. In the second phase, a prototype of the application was designed and its usability was evaluated by using QUIS questionnaire. Results Most of the proposed educational content, data elements, and the application functions, such as medication time reminder, assessing the severity of fatigue, and calculating the score of the Fatigue Severity Scale were found necessary to be included in the application. Finally, the usability of the application was evaluated by the users and the average of mean values was 7.6 out of 9 which indicated a “good” level of user satisfaction. Conclusions The application designed in this study was able to collect patient data and facilitated consulting physicians at the point of need. It is expected that the patients' quality of life and health status can be improved by using this application. However, more research is required to investigate the efficiency and effectiveness of this application in terms of reducing the number of visits to the medical centers, improving self-management skills of MS patients and their quality of life.

Self-management, self-esteem and their associations with psychological well-being in people with multiple sclerosis

BackgroundOptimal self-management seem to be protective factor of health-related quality of life and psychological well-being in many chronic conditions. However, the results in people with multiple sclerosis (MS) are still inconclusive. Thus, the aim of this study is to assess the associations between self-management, self-esteem and psychological well-being in people with MS when controlled for sociodemographic and clinical variables. MethodsA total of 165 people with MS filled in The Multiple Sclerosis Self-Management Scale, Rosenberg Self-Esteem scale, and General Health Questionnaire-28, to assess main variables under study. Functional status was measured by Kurtzke disability Status Scale. ResultsWe found significant associations between self-esteem and somatic symptoms, anxiety/insomnia, social dysfunction and severe depression. Explained variance of the models ranged from 16% to 38% for somatic symptoms and severe depression, respectively. Self-management significantly contributed to the explained variance in all models sans GHQ social dysfunction. Self-esteem was significant contributor to overall variance in all models. DiscussionAccording to our results, self-management and self-esteem were found to be associated with multiple domains of psychological well-being. These findings may be used in neurological practice, to help people with MS who report psychological distress in one or more domains.

Exploring Self-management Needs of Persons With Multiple Sclerosis: A Qualitative Study for Mobile Application Development.

Multiple sclerosis (MS) is a common cause of neurologic disability in young adults. Individuals with MS deal with the day-to-day effects of the disease on their lives. Self-management can help with these challenges. This study aimed to explore MS self-management needs according to experiences of persons with MS and was conducted as part of a research project to develop an MS self-management mobile application. We used a qualitative method to elicit self-management needs among 12 individuals with MS and conducted semistructured interviews with them. The participants were chosen based on snowball sampling. The interviews were recorded and transcribed verbatim. Finally, qualitative data were analyzed using a content analysis method (inductive way) to identify the underlying themes and subthemes. The analysis resulted in the emergence of 7 themes: the source of information, basic needs, understanding MS, physical exercises in MS, useful nutrition in MS, MS monitoring, and communication. Within these 7 themes we identified 23 subthemes. The themes that emerged in this study show what needs are essential to help persons with MS improve their self-management capacity. These findings can help in the development of self-management mobile applications for supporting individuals in managing MS.