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 ◽  
...  

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.

2013 ◽  
Vol 15 (2) ◽  
pp. 90-97 ◽  
Author(s):  
Judy Ann Wollin ◽  
Nancy Spencer ◽  
Elizabeth McDonald ◽  
Gary Fulcher ◽  
Maureen Bourne ◽  
...  

This study explored changes in quality of life (QOL) and psychosocial variables in a large cohort of people with multiple sclerosis (MS). A total of 1287 Australians with MS were administered self-report questionnaires at baseline and 24 months later to examine the impact of disease severity and duration, perceived stress, self-efficacy, depression, and social support on QOL and self-care. Over the 2-year survey period, MS remained stable for 70% of respondents. Disease severity correlated with social support at baseline but not at 24 months, when the only significant correlation with disease severity was that of the World Health Organization Quality of Life–100 instrument (WHOQOL-100) domain of Level of Independence. Although QOL improved across the WHOQOL-100 domains Physical, Psychological, Level of Independence, Social Relationships, and Environment, decreases were found in the WHOQOL-100 facet overall QOL and well-being as well as self-efficacy over the same time period. Hierarchical multiple regression was used to assess the utility of four control measures. MS disease severity and MS disease duration were entered at Step 1, explaining 16.1% of the variance in QOL. After entry of perceived stress, self-efficacy, social support, and the Depression, Anxiety and Stress Scale–21 (DASS-21) at Step 2, the total variance explained by the model as a whole was 55.8% (F6,1028 = 216.495, P < .001). Thus, even in the presence of stable disease and improvement in some WHOQOL-100 domains, overall QOL and self-efficacy had decreased at 2 years after the collection of baseline data. Loss of self-efficacy, increased stress, and depression are key factors in reduced QOL in people with MS.


10.2196/14297 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e14297
Author(s):  
Peter Joseph Jongen ◽  
Gezien ter Veen ◽  
Wim Lemmens ◽  
Rogier Donders ◽  
Esther van Noort ◽  
...  

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.


2016 ◽  
Vol 18 (3) ◽  
pp. 116-121 ◽  
Author(s):  
Hilda Mulligan ◽  
Amanda Wilkinson ◽  
Amelia Barclay ◽  
Hayley Whiting ◽  
Christelle Heynike ◽  
...  

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.


2015 ◽  
Vol 17 (1) ◽  
pp. 1-8 ◽  
Author(s):  
Kimberly Beckwith McGuire ◽  
Jelena Stojanovic-Radic ◽  
Lauren Strober ◽  
Nancy D. Chiaravalloti ◽  
John DeLuca

Background: Multiple sclerosis (MS) mostly affects young and middle-aged adults and is known to be associated with a host of factors involved in overall quality of life and well-being. The biopsychosocial model of disease takes into account the multifaceted nature of chronic illness and is commonly applied to MS. The present investigation examined the effectiveness of a 10-week psychoeducational MS wellness program that was developed on the basis of the biopsychosocial model and a wellness approach to treatment. Methods: The program consisted of 90-minute, weekly psychoeducational wellness group sessions aimed at improving quality of life by increasing awareness of the various social, intellectual, emotional, and spiritual factors that can affect the overall well-being of people living with MS. Fifty-four individuals with MS participated in the study (43 individuals who completed the wellness intervention and 11 individuals with MS who did not participate; “controls”). All participants completed a series of self-report questionnaires at baseline and at the 10-week follow-up, assessing depression, anxiety, perceived stress, cognitive complaints, pain, social support, and fatigue. Results: Repeated-measures analysis revealed improvements in depression, anxiety, overall mental health, perceived stress, and pain in the treatment group compared with the control group. No significant differences were observed between the groups on measures assessing social support, cognitive complaints, and fatigue. Conclusions: The findings suggest that a psychoeducational wellness program is effective in improving the overall quality of life and well-being of individuals with MS.


2020 ◽  
Vol 11 (5) ◽  
pp. 687-700
Author(s):  
Victoria Momenabadi ◽  
◽  
Mohammad Hossein Kaveh ◽  
Nouzar Nakhaee ◽  
Kambiz Karimzadeh Shirazi ◽  
...  

Introduction: Promoting self-care practice, as a critical strategy for enhancing the quality of life in patients with Multiple Sclerosis (MS) is a challenging issue. This study aimed to propose a model of health-promoting self-care behaviors in MS patients. Methods: In this cross-sectional study, 200 patients with MS, who had referred to the Hospital for Special Diseases in Kerman City, Iran, were chosen. The main data collection instruments were the multiple sclerosis knowledge questionnaire, the Rosenberg self-esteem scale, multiple sclerosis self-efficacy scale, questionnaire of perceived barriers and benefits of self-care behaviors, social support, the health promotion lifestyle profile II, and resilience and sense of coherence scale. Data analysis was conducted in SPSS V. 22 and AMOS18 software. The Structural Equation Modeling (SEM) was also used for further analysis of data Results: The model explained 82% of variance in Health-Promoting self-care Behavior (HPB). The results of the final model obtained from the SEM showed that self-efficacy (β=0.53, SE=0.04, P= 0.007), self-esteem (β=0.39, SE=0.04, P=0.005), social support (β=0.36, SE=0.04, P=0.009), sense of coherence (β=0.34, SE=0.07, P=0.006), resilience (β=0.33, SE=0.07, P=0.018), and perceived benefits (β=0.25, SE=0.05, P=0.009) had a positive and significant relationship with HPB. Conclusion: The self-care empowerment model in patients with MS presented in this study can be used as a framework for designing health promotion interventions to improve the quality of life of patients with MS.


2018 ◽  
Author(s):  
Lizzy MM Boots ◽  
Marjolein E de Vugt ◽  
Gertrudis IJM Kempen ◽  
Frans RJ Verhey

BACKGROUND The benefits of electronic health support for dementia caregivers are increasingly recognized. Reaching caregivers of people with early-stage dementia could prevent high levels of burden and psychological problems in the later stages. OBJECTIVE The current study evaluates the effectiveness of the blended care self-management program, Partner in Balance, compared to a control group. METHODS A single-blind randomized controlled trial with 81 family caregivers of community-dwelling people with mild dementia was conducted. Participants were randomly assigned to either the 8-week, blended care self-management Partner in Balance program (N=41) or a waiting-list control group (N=40) receiving usual care (low-frequent counseling). The program combines face-to-face coaching with tailored Web-based modules. Data were collected at baseline and after 8 weeks in writing by an independent research assistant who was blinded to the treatment. The primary proximal outcome was self-efficacy (Caregiver Self-Efficacy Scale) and the primary distal outcome was symptoms of depression (Center for Epidemiological Studies Depression Scale). Secondary outcomes included mastery (Pearlin Mastery Scale), quality of life (Investigation Choice Experiments for the Preferences of Older People), and psychological complaints (Hospital Anxiety and Depression Scale-Anxiety and Perceived Stress Scale). RESULTS A significant increase in favor of the intervention group was demonstrated for self-efficacy (care management, P=.002; service use P=.001), mastery (P=.001), and quality of life (P=.032). Effect sizes were medium for quality of life (d=0.58) and high for self-efficacy care management and service use (d=0.85 and d=0.93, respectively) and mastery (d=0.94). No significant differences between the groups were found on depressive symptoms, anxiety, and perceived stress. CONCLUSIONS This study evaluated the first blended-care intervention for caregivers of people with early-stage dementia and demonstrated a significant improvement in self-efficacy, mastery, and quality of life after receiving the Partner in Balance intervention, compared to a waiting-list control group receiving care as usual. Contrary to our expectations, the intervention did not decrease symptoms of depression, anxiety, or perceived stress. However, the levels of psychological complaints were relatively low in the study sample. Future studies including long-term follow up could clarify if an increase in self-efficacy results in a decrease or prevention of increased stress and depression. To conclude, the program can provide accessible preventative care to future generations of caregivers of people with early-stage dementia. CLINICALTRIAL Netherlands Trial Register NTR4748; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4748 (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg)


2010 ◽  
pp. 1-6
Author(s):  
Carol A. Mancuso ◽  
Wendy Sayles ◽  
John P. Allegrante

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