Self-Management of Multiple Sclerosis

2017 ◽  
pp. 382-405
Author(s):  
Malachy Bishop ◽  
Michael Frain
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Psychosocial Functioning ◽  
Self Management ◽  
Effective Practices ◽  
Health And Wellness ◽  
Critical Component ◽  
Research Directions ◽  
Neurological Condition

Multiple sclerosis (MS) is a chronic neurological condition that can impact one’s health and functioning, role participation, and quality of life in a wide variety of ways. Self-management is increasingly recognized as a critical component of MS care and a person-directed approach to health and wellness. Given the range of ways that MS may affect physical and cognitive as well as psychosocial functioning, effective and comprehensive MS self-management may require a broad range of knowledge and resources. Thus this chapter explores current perspectives on MS self-management, evaluates the research evidence and current research directions, and identifies effective practices in MS self-management.

scholarly journals The Interactive Web-Based Program MSmonitor for Self-Management and Multidisciplinary Care in Persons With Multiple Sclerosis: Quasi-Experimental Study of Short-Term Effects on Patient Empowerment

10.2196/14297 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e14297
Author(s):  
Peter Joseph Jongen ◽  
Gezien ter Veen ◽  
Wim Lemmens ◽  
Rogier Donders ◽  
Esther van Noort ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Self Efficacy ◽  
Multidisciplinary Care ◽  
Self Management ◽  
Control Group ◽  
Short Term ◽  
Quasi Experimental ◽  
Program Components

Background Empowerment helps persons with a chronic disease to self-manage their condition and increase their autonomy and participation. MSmonitor (Curavista bv) is an interactive Web-based program for self-management and multidisciplinary care in multiple sclerosis (MS). It includes, among others, short questionnaires on fatigue (Modified Fatigue Impact Scale-5 [MFIS-5]) and health-related quality of life (HRQoL, Leeds Multiple Sclerosis Quality of Life [LMSQoL]); long questionnaires on disabilities, perception of disabilities (Multiple Sclerosis Impact Profile), and HRQoL (Multiple Sclerosis Quality of Life-54); a Medication and Adherence Inventory and an Activity Diary. The combination MFIS-5, LMSQoL, and Medication and Adherence Inventory constitutes the Quick Scan. Objective This study aimed to investigate the short-term effects of MSmonitor on empowerment in patients with MS. Methods We conducted a quasi-experimental study in a general hospital. Of the 180 patients with MS, 125 were eligible, 30 used MSmonitor, and 21 participated in the study (mean age 45.4 years, SD 10.2 years). A total of 24 eligible patients who did not use MSmonitor constituted the control group (mean age 49.3 years, SD 11.4 years). At baseline and at 4 months, we assessed self-efficacy (Multiple Sclerosis Self-Efficacy Scale [MSSES]), participation and autonomy (Impact on Participation and Autonomy [IPA] questionnaire), and self-management (Partners In Health [PIH] questionnaire). Differences between time points and groups were tested with paired t tests and χ² tests. Results In the MSmonitor group, follow-up values remained unchanged for MSSES control (P=.19), MSSES function (P=.62), IPA limitations (P=.26), IPA problems (P=.40), PIH recognition and management of symptoms (P=.52), PIH adherence to treatment (P=.80), and PIH coping (P=.73), whereas the PIH knowledge score had improved (mean 27.8, SD 1.7 vs mean 28.7, SD 2.0; P=.02). The overall utilization rate of the program components was 83% and that of the Quick Scan was 95%. In the control group, all outcomes had remained unchanged. Conclusions The results suggest that for first-time users of the MSmonitor program and their health care providers, it may not be justified to expect a short-term improvement in empowerment in terms of self-efficacy, self-management, autonomy, or participation. Furthermore, a lack of effect on empowerment is not because of nonusage of the program components.

scholarly journals Empowerment-based interventions in people with multiple sclerosis: a review study

2019 ◽  
Author(s):  
Sajjad Saadat ◽  
Mehrdad Kalantari ◽  
Mohammad Bagher Kajbaf ◽  
Mozaffar Osseininezhad
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Chronic Disease ◽  
Self Care ◽  
Self Management ◽  
Iranian Studies ◽  
Male Patients ◽  
Review Study

Introdution: Multiple sclerosis is a chronic disease in the nervous system; It has many problems due to its chronic and promising nature. The treatment of this disease includes medical care and empowerment interventions for symptom management. The purpose of this study was to review the empowerment interventions in these patients. Methods: This study was conducted in a Systematic Reviewperiod from January 2000 to June 2018. On indexing sites “Magiran, PubMed, Google Scholar and Science Direct” searched the key words of Multiple Sclerosis, Chronic Disease, Quality of Life, Self-care, Self-management, Rehabilitation, Empowerment, Psychotherapy, Psychological interventions, Clinical Trials, and Randomized Clinical Trial. Out of 1855 articles found, 33 articles were selected for review. Results: The results of this study showed that empowerment interventions in people with MS can be divided into four categories of self-care, self-management, rehabilitation and psychotherapy interventions. Lack of attention to empowerment interventions in people with MS, especially in the Iran, low attention to male patients in implementing interventions, failure to consider the theoretical framework in the formulation of interventions, lack of follow-up test and non-use of virtual intervention methods (Such as using DVDs, consulting and telephone training, etc.) in Iranian studies, is one of the most respected points in previous studies. Conclusion: Empowerment studies have provided significant results in reducing symptoms and improving the quality of life of patients, which can help improve these interventions by considering some of the points.

Self-Management of Epilepsy

2017 ◽  
pp. 319-339
Author(s):  
Janice M. Buelow ◽  
W. Henry Smithson
Keyword(s):  
Quality Of Life ◽  
Coping Strategies ◽  
Case Studies ◽  
Psychosocial Functioning ◽  
Self Management ◽  
Life Choices ◽  
Psychological Strain ◽  
The Individual ◽  
The Impact

Epilepsy is a stigmatizing condition characterized by recurrent unprovoked seizures that can restrict life choices, lead to a reduced quality of life, and psychological strain. Self-management can be defined as the sum of steps needed to gain seizure control, to minimize the impact of living with epilepsy, and to maximize quality of life. The individual with epilepsy has to manage much more than just medication: they have to know about diagnosis and treatment, the best ways to manage the condition, and ways of maintaining psychosocial functioning. This chapter uses case studies and literature to describe various coping strategies and interventions to enhance self-management for people with epilepsy.

scholarly journals Evaluation of a Fatigue Self-Management Program for People with Multiple Sclerosis

2016 ◽  
Vol 18 (3) ◽  
pp. 116-121 ◽  
Author(s):  
Hilda Mulligan ◽  
Amanda Wilkinson ◽  
Amelia Barclay ◽  
Hayley Whiting ◽  
Christelle Heynike ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Self Efficacy ◽  
Short Form ◽  
Small Sample Size ◽  
Management Program ◽  
Small Sample ◽  
Self Report ◽  
Self Management

Background: Fatigue is one of the most common and debilitating symptoms of multiple sclerosis (MS). The program “Minimise Fatigue, Maximise Life: Creating Balance with Multiple Sclerosis” (MFML) was created in New Zealand because of the lack of a fatigue management program for people with MS in that country. This program aims to empower individuals with MS to manage their own symptoms of fatigue. The objective of this study was to evaluate the MFML fatigue self-management program. Methods: Self-report questionnaires were used to measure impact of fatigue (5-item Modified Fatigue Impact Scale), self-efficacy (MS Self-efficacy Scale), and quality of life (12-item Short Form Health Status Survey [SF-12]) 1 month before (T1), at commencement of (T2) (to investigate the stability of questionnaire scores before the intervention), and at the end of (T3) the 6-week group-based program. Increased self-efficacy and quality of life scores and a decrease in reported impact of fatigue were the anticipated primary outcomes, with participants acting as their own controls. Results: Twenty-five women (aged 37–63 years) participated. Stability of scores for all the questionnaires was evidenced between T1 and T2. After the intervention (T3), scores showed a significant improvement in self-efficacy and impact of fatigue, with large effect sizes, but no change in either the physical or mental component summary of the SF-12. Conclusions: Despite the small sample size, this study showed an organized approach to the management of fatigue for people living with MS, and its outcomes demonstrated benefits for participants.

scholarly journals A systematic review of the effectiveness of self-management interventions in people with multiple sclerosis at improving depression, anxiety and quality of life

PLoS ONE ◽  
2017 ◽  
Vol 12 (10) ◽  
pp. e0185931 ◽  
Author(s):  
Tara Kidd ◽  
Nicola Carey ◽  
Freda Mold ◽  
Sue Westwood ◽  
Maria Miklaucich ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Systematic Review ◽  
Self Management ◽  
Management Interventions

scholarly journals A Smartphone-based Application for Self-Management in Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-7
Author(s):  
Mahdieh Mokhberdezfuli ◽  
Haleh Ayatollahi ◽  
Abdorreza Naser Moghadasi
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
User Satisfaction ◽  
Self Management ◽  
Second Phase ◽  
Management Skills ◽  
Mean Values ◽  
Collect Patient Data ◽  
Data Elements

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.

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

2010 ◽  
Vol 12 (3) ◽  
pp. 133-141 ◽  
Author(s):  
Judy Ann Wollin ◽  
Gary Fulcher ◽  
Elizabeth McDonald ◽  
Nancy Spencer ◽  
Miranda Y. Mortlock ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Social Support ◽  
Disease Severity ◽  
Perceived Stress ◽  
Self Efficacy ◽  
Disease Duration ◽  
Self Management ◽  
Mediating Variables

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.

Facilitators and Barriers and Self-management in Adults With Multiple Sclerosis

2021 ◽  
Author(s):  
Wallette G. Widener
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Cognitive Deficits ◽  
Significant Relationship ◽  
Linear Regression Analysis ◽  
Self Management ◽  
Cross Sectional ◽  
Facilitators And Barriers ◽  
The Relationship

Abstract Background: An estimated 2.3 million individuals affected worldwide are affected by multiple sclerosis. Due to advancements in treatment and earlier diagnosis, there are higher numbers of people living with MS than ever before. There is evidence linking optimal self-management to better outcomes among patients with chronic illnesses; however, regarding adults with MS specifically, the results are inconclusive. The purpose of this study was to determine whether self-management mediates the relationship between facilitators and barriers (comorbidity, condition severity, pain, fatigue, and cognitive deficits) and quality of life.Methods: To complete this cross-sectional correlational quantitative study, the researcher recruited a sample of 196 U.S. adults diagnosed with MS and administered a survey consisting of the Comorbidity Questionnaire for MS, the Patient-Determined Disease Steps, the Numeric Pain Intensity Scale, the Fatigue Severity Scale, the Multiple Sclerosis Neuropsychological Screening Questionnaire, the Multiple Sclerosis Self-Management Scale-Revised, the Multiple Sclerosis International Quality of Life, and a demographic questionnaire. The results were analyzed using multiple linear regression analysis.Results: The studied facilitators and barrier had statistically significant relationship(s) with thedependent variable of QoL; however, the relationship between fatigue, pain, and QoL was notsupported. A relationship exists between comorbidity, condition severity, and symptomatology and self-management. Finally, there is a significant relationship between self-management and QoL; however, self-management did not mediate the relationship between the comorbidity, condition severity, and symptomatology (pain, fatigue, and cognitive deficits) and QoL.Conclusions: By providing an understanding of the factors that hinder or facilitate MS self-management, the findings can inform the development of interventions and the improvement of health outcomes for adults with MS.

scholarly journals Efficacy of an ACT and Compassion-Based eHealth Program for Self-Management of Chronic Pain (iACTwithPain): Study Protocol for a Randomized Controlled Trial

2021 ◽  
Vol 12 ◽  
Author(s):  
Sérgio A. Carvalho ◽  
Inês A. Trindade ◽  
Joana Duarte ◽  
Paulo Menezes ◽  
Bruno Patrão ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Chronic Pain ◽  
Psychosocial Functioning ◽  
Outcome Measurement ◽  
Controlled Trial ◽  
Healthcare Services ◽  
Self Management ◽  
Clinical Trial Registration ◽  
Self Compassion

BackgroundChronic pain (CP) has serious medical and social consequences and leads to economic burden that threatens the sustainability of healthcare services. Thus, optimized management of pain tools to support CP patients in adjusting to their condition and improving their quality of life is timely. Although acceptance and commitment therapy (ACT) is considered an evidence-based psychological approach for CP, evidence for the efficacy of online-delivered ACT for CP is still scarce. At the same time, studies suggest that self-compassion mediates the change in disability and psychopathological symptoms in ACT interventions for CP, although self-compassion is not a specific target in ACT. Thus, an explicit focus on self-compassion might increase the efficacy of ACT interventions for CP, although this hypothesis has not been tested. This study aims to develop an eHealth ACT and compassion-based self-management intervention for CP, the iACTwithPain, and to compare its efficacy in improving health outcomes to a similar ACT-only intervention and a medical TAU group.MethodsThe eHealth platform that will host the interventions will be developed using a flat design identity and will be interactive. The iACTwithPain intervention will comprise eight weekly self-management sessions and will be developed taking into consideration the psychological flexibility model applied to CP, with the addition of explicit compassion-based components. To analyze whether the iACTwithPain intervention will present superiority in improving CP’s impact and related health markers over the two other conditions, this study will follow an RCT design with three arms. CP patients will be recruited through direct contact with patient associations and healthcare services and a national press release in Portugal. Outcome measurement will be conducted at baseline, post-intervention and at 3- and 6-month follow-ups. The interventions’ acceptability will also be assessed.DiscussionThe iACTwithPain intervention is expected to improve CP patients’ psychosocial functioning, quality of life, and empowerment, by promoting adaptive disease management and regulation of pain-related internal experiences. Results will contribute to a better understanding on the pertinence of adding compassion elements to ACT for CP and to reach an optimized intervention for CP.Clinical Trial RegistrationThis trial has been registered at ClinicalTrials.Gov (NCT04200183; 16 December 2019; https://clinicaltrials.gov/ct2/show/NCT04200183). The current manuscript comprises the first version of this clinical trial’s protocol.

Sign in / Sign up

Export Citation Format

Share Document