Social participation and health-related quality of life in people with multiple sclerosis

doi:10.1016/j.dhjo.2014.07.002

Disability and Health Journal

Volume 8, Issue 1, January 2015, Pages 29-34

Abstract of this article was presented at conference of European Health Psychology Society titled: Well-being, Quality of Life and Caregiving in Bordeaux, France, 2013.

https://doi.org/10.1016/j.dhjo.2014.07.002 Get rights and content

Abstract

Background

Social participation is an integral part of everyday life in society; however, evidence about its association with health-related quality of life (HRQoL) in people with multiple sclerosis (MS) is lacking.

Objective

The aim of this study is to explore whether social participation is associated with the Physical Component Summary of HRQoL (PCS) and Mental Component Summary of HRQoL (MCS) in people with MS, controlled for age, gender, disease severity and disease duration.

Methods

The sample consisted of 116 consecutive people with MS (response rate: 75.8%; 72.4% women; mean age 40.3 ± 9.8). People with MS completed the Short-Form Health Survey (SF-36) for measuring PCS and MCS and the Participation Scale, which measures the level of social participation. Disability was assessed using the Expanded Disability Status Scale (EDSS). The associations between social participation, PCS and MCS, were analyzed using linear regression that controlled for sociodemographic and clinical variables.

Results

PCS was significantly associated with age, disease duration, EDSS and social participation. MCS did not show significant association with the studied variables. Overall, a multiple regression model explained 48% of the PCS variance, while the proportion of MCS variance explained was not significant.

Conclusions

Social participation was significantly associated with PCS, suggesting a possibility for intervention in this domain.

Section snippets

Participants

People who met the McDonald criteria (objective clinical findings, dissemination of specific lesions in the central nervous system and a paraclinical examination which helps to exclude false-positive and false-negative diagnoses of MS) were eligible for the study.¹⁹ A total of 153 consecutive people with MS from the Neurology Department of the L. Pasteur University Hospital in Košice were asked to participate in the study. There was no selection based on age, gender or other variables. All

Results

A basic description of the study population is given in Table 1 (n = 116). The respondents averaged 40.35 years old and consisted of 72.4% women. The mean EDSS score was 3.08, and the mean disease duration was 7.04 years. The majority of people (79.2%) were diagnosed with the relapse-remitting clinical type (Table 1).

Before we proceeded with the regressions, we prepared the data, starting with the correlations, which indicated that EDSS correlated strongly with the sociodemographic data. PCS

Discussion

The aim of this study was to determine if there is an association between social participation and the physical and mental components of health-related quality of life in people with MS. These associations were controlled for demographic and clinical variables. Our results provide evidence that social participation is an important factor associated with PCS, while in MCS it was not significant.

According to our results, higher PCS scores are associated with higher levels of peoples' satisfaction

Strengths and limitations

The main strength of this study is the approach regarding social participation on the basis of peer comparisons with the HRQoL. This, although without a control group, gives us a better understanding of social participation in one's specific conditions and not only a comparison with the general average population. Some limitations should be noted, however. Although the women-to-men ratio in MS is generally 2:1, in our sample this ratio was higher (72.4% women); thus, the results may be better

Conclusion

This study is beneficial in that it shows that social participation is very important for PCS in people with MS. According to our results, isolation and avoiding social activities are associated with lower HRQoL in people with MS. Hiding from social activities may seem comfortable and easy, as it eliminates the stress from obstacles to social participation caused by health problems, but this study indicates that there is an association between social participation and PCS. This could be the

Acknowledgments

We wish to thank the people with multiple sclerosis who participated in this study.

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Cooling garments can improve physical function for people with MS. Since none of the cooling garments caused harm, and no particular cooling garment could be identified as being superior, people with MS should experiment with different cooling garments to determine their preference, and industry should focus on cooling garments that are effective, accessible and user-friendly.
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Individuals with multiple sclerosis (MS) report barriers to accessing care, including receipt of preventive services. Potentially preventable hospitalization (PPH) is an important marker for access to, and receipt of timely care. However, few national studies have examined PPH risk in people with MS or considered the role of preventive care in reducing PPH risk among this patient population. Our objective was to examine PPH risk among adults with MS compared with their counterparts without MS.
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The rate of any PPH among people with MS was double that of those without MS (131.6 vs 62.5 per 10,000). We identified higher odds of specific PPH indicators among people with MS compared to those without. Individuals with MS had 65% higher odds of hospitalization for pneumonia (OR=1.65, 95% CI: 1.01, 2.30), with similar significant findings observed for urinary tract infections (OR=4.90, 95% CI: 2.51, 9.57). In MS patients, receipt of preventive services, namely cholesterol screening (OR=0.76, 95% CI: 0.60, 0.95) and annual wellness visits were associated with lower odds of any PPH (OR=0.57, 95% CI: 0.43, 0.76).
People with MS were at a higher risk for PPHs compared with their counterparts without MS. Use of appropriate preventive services reduced the risk of PPH among the general population and among those with MS. More efforts are needed to encourage and facilitate the use of preventive care among people with MS. Receipt of timely and appropriate preventive care in this population may reduce the risk for PPH.
Exercise and Sports Science Australia (ESSA) position statement on exercise for people with mild to moderate multiple sclerosis
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Citation Excerpt :
Other common symptoms in MS are cognitive impairment (~43–70% of people with MS),6,70 and anxiety/depression (~30–50% of people with MS).22,31,84 Collectively, these symptoms tend to cluster together 31,85,86 and often negatively affect quality of life,32,87 daily activities,10 social participation12 and employment.11,88 Falls present another significant factor that compromises daily activities, social participation and quality of life in people with MS. Prospective data from a large international cohort of people with MS (N = 537) showed that ~60% of people with MS who are still mobile (EDSS ≤6.5) experience at least one fall in three months and ~ 40% suffer frequent (2+) falls in this period.33
Multiple sclerosis (MS), the most common chronic and progressive neurological condition of the central nervous system, affects 26,000 Australian adults. Exercise training has beneficial effects on MS-related impairments including reduced muscular strength, poor aerobic capacity and impaired mobility, and in consequence can improve quality of life. This Position Statement provides evidence-based recommendations for exercise prescription and delivery of exercise training for people with MS with mild to moderate disability.
Synthesis of published works within the field of exercise training in MS.
Exercise provides many benefits to people with MS. There is strong evidence that resistance and aerobic training, performed 2 to 3 times per week at a moderate intensity, are safe and can improve muscle strength, cardiorespiratory fitness, balance, fatigue, functional capacity, mobility and quality of life in people with MS with mild to moderate disability (Expanded Disease Severity Scale (EDSS) ≤ 6.5). However, the evidence for those with severe disability (EDSS >6.5) is less clear. The effects of exercise on MS pathogenesis, central nervous structures and other outcomes such as depression and cognitive impairment, have not been adequately investigated. Effective exercise interventions to improve balance, joint contractures and reduce falls in people with MS are also urgently needed as well as investigations of long-term (≥1 year) effects of exercise training.
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To evaluate the relationships among patient-reported balance confidence and social satisfaction and social participation in people with multiple sclerosis (pwMS).
75 ambulatory pwMS who had sustained at least two falls or near falls in the prior two months self-reported their balance confidence (Activities-specific Balance Confidence (ABC) questionnaire) and social satisfaction and participation (Patient Reported Outcomes Measurement Information System (PROMIS) measures). Correlations between the ABC and PROMIS measures were examined using Spearman's rank correlation.
In a cross-sectional analysis, ABC scores and PROMIS scores for social satisfaction and social participation were statistically significantly correlated (ρ 0.37–0.54, p ≤ 0.001). The correlation between balance confidence and social satisfaction was consistently stronger at each time point than between balance confidence and social participation.
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Social participation and quality of life among patients with neuromyelitis optica spectrum disorders: The mediating effects of depression
2022, Multiple Sclerosis and Related Disorders
Citation Excerpt :
Like MS, NMOSD affects social functioning to a certain extent. Poor vision and pain decreased functional independence (Mikula et al., 2015). Although social participation is challenging for NMOSD sufferers, there has been no published research on the topic.
Depression is one of the most common and important symptoms of patients with neuromyelitis optica spectrum disorders. Depression is an important aspect of mental health which would be expected to affect a person's social participation. Studies have shown that depression and social participation are independent predictors of health-related quality of life. Depression especially affects its mental component and social participation especially affects its physical aspects. This study was designed to explore to what extent depression may regulate the relationship between social participation and quality of life.
A convenience sample of 138 discharged patients with neuromyelitis optica spectrum disorders were surveyed. They were asked about their demographic characteristics and disease-related information. Their ability in the activities of daily living was quantified using the Barthel Index. The 36-item short-form health survey, the Beck Depression Inventory and the Impact on Participation and Autonomy questionnaire were also administered. Univariate analysis and Pearson correlations were used to test for any significant relationships between the variables and quality of life. The mediating effect of depression on the association between social participation and life quality was examined using structural equation modeling.
The structural equation models provided an excellent fit for the data. Social participation and the physical aspects of life quality were found to be strongly associated. And depression was of course strongly related to the mental aspects. Depression was not a mediator in the significant relationship between social participation and the physical aspects of life quality, but depression was found to be a strong and significant meditator in the association between social participation and the mental aspects of life quality.
These findings help to clarify the direct and indirect effects of depression and social participation on the life quality of patients with neuromyelitis optica spectrum disorders. While helping and encouraging patients to actively participate in social life should be supplemented by monitoring them for signs of depression and providing appropriate treatment.

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: This work was supported by the Slovak Research and Development Agency under contract APVV-0220-10 (80%). Furthermore, this work was partially supported by the Agency of the Slovak Ministry of the Education, Science, Research and Sport of the Slovak Republic for the Structural Funds of the EU under project no. ITMS: 26220120058 (20%).

: Declaration of interest statement: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

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Research PaperSocial participation and health-related quality of life in people with multiple sclerosis

Abstract

Background

Objective

Methods

Results

Conclusions

Section snippets

Participants

Results

Discussion

Strengths and limitations

Conclusion

Acknowledgments

Int J Nurs Stud

Arch Psychiatr Nurs

Disabil Health J

Arch Phys Med Rehabil

Neurol Neurochir Pol

Disabil Health J

Disabil Health J

Diagnosis and treatment of multiple sclerosis

BMJ

Loss and change: experiences of people severely affected by multiple sclerosis

Palliat Med

Stress and depression symptoms in patients with multiple sclerosis: the mediating role of the loss of social functioning

Acta Neurol Scand

The effect of disease duration on grey mater volume and cognitive performance in relapsing-remitting multiple sclerosis patients

J Neurol Sci

Is social participation associated with quality of life of older adults with physical disabilities?

Disabil Rehabil

Factors affecting social participation of elderly people: a study in Lahore

J Anim Plant Sci

International Classification of Functioning, Disability and Health

Research Paper
Social participation and health-related quality of life in people with multiple sclerosis