Care Partners and Multiple Sclerosis (original) (raw)
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Quality of Life and Burden in caregivers of Multiple Sclerosis patients
Physiotherapy and Health Activity, 2017
Multiple sclerosis (MS) is one of the most disabling disorders of the central nervous system. Caregivers of individuals with MS may experience unique caregiver strain due to the age at onset and progressive nature of the disease. Additionally, because MS is more prevalent in women, men often become spousal caregivers. This places women in the position of being care recipients rather than caregivers. Some results also supported hypothesis that female caregivers reported a higher need for emotional support than male caregivers. As with female caregivers, decreased emotional support predicted poorer QoL among male caregivers.Caring for a MS patient may negatively impact several objective and subjective aspects of caregiver’s life, such as physical and emotional health, morale, work life, finances, social mobility, interpersonal relationships and sexual life. In studies assessing the psychological consequences of care a higher level of anxiety and depression in caregivers than in the ge...
Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis
Journal of Clinical Neurology
Background and Purpose This study aimed was to measure the quality of life, fatigue, stress, and depression in a consecutive sample of caregivers of multiple sclerosis (MS) patients. Methods We included data from 131 consecutive caregivers of MS patients [age=51.2±12.8 years (mean±SD), males=53.4%, duration of caregiving=10.0±6.3 years]. We assessed the quality of life, fatigue, stress, and depression of the caregivers using the 36-item Short Form Health Survey, Krupp Fatigue Severity Scale, Kingston Caregiver Stress Scale, and Hamilton Scale for Depression, respectively. The disability status of the patients was assessed using the Kurtzke Expanded Disability Status Scale. We used linear regression models to identify possible correlations between all of the aforementioned scales, while multivariable logistic regression models were employed to assess the correlations of caregiver fatigue with caregiver characteristics and patient disability. Results The linear regression analyses revealed that caregiver fatigue was positively associated with stress and negatively correlated with both physical health status and mental health status. Caregiver stress was positively associated with depression and negatively correlated with both physical health status and mental health status. Depression was negatively correlated with both caregiver physical health status and mental health status. In multivariable logistic regression analysis, caregiver fatigue was found to be independently associated with education status [odds ratio (OR)=0.61, 95% CI=0.37 to 0.99], history of chronic disease (OR=5.52, 95% CI=1.48 to 20.55), other chronic diseases in the family (OR=7.48, 95% CI=1.49 to 37.47), and the disability status of the patient (OR=1.36, 95% CI=1.03 to 1.80). Conclusions Fatigue, stress, and depression in caregivers of MS patients are negatively correlated with their physical health status and mental health status. Caregiver fatigue is independently associated with education status, history of chronic disease, other chronic disease in the family, and patient disability.
Multiple Sclerosis, 2004
We hope that you are continuing to enjoy MS Scan as we complete our first year of publication. If you have not yet signed up and are interested in receiving this publication in the future, please contact us to put yourself on the complimentary MS Scan list (see back page). In this issue of MS Scan, you will find coverage of an article exploring linkage between depression in caregivers and health and emotional status of patients with MS, sugggesting that when one suffers, so does the other. The subject of depression is also featured in this issue's Putting Research Into Practice column, in which NMSS psychologist Dr. Rosalind Kalb addresses how to identify and manage depression in patients with MS and their caregivers. This issue also covers 2 recent articles specific to disease-modifying agents-one on predicting adherence in patients treated with glatiramer acetate, and another on a potential new delivery method for treatment in the form of interferon -1b administered intranasally. If you would like to receive future issues of MS Scan, please contact us by phone at 212-704-4539 or by e-mail at MSscan@bioscicom.net to sign up, and let us know if you would prefer to receive the publication via fax or e-mail. We look forward to hearing from you.
Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms
Journal of Neurology, Neurosurgery & Psychiatry, 2007
Background: We studied the level of distress in caregivers of patients with recently diagnosed multiple sclerosis (MS), and their relation to clinical characteristics. Methods: Caregivers of patients with MS and Parkinson's disease completed measures of distress and quality of life. MS patients underwent neurological, neuropsychiatric and neuropsychological examinations.
Caregiver burden among informal caregivers assisting people with multiple sclerosis
International journal of MS care, 2011
Multiple sclerosis (MS) burdens not only patients but also their informal or family caregivers. This study was conducted to identify characteristics of caregivers, caregiving, and MS patients receiving informal care that are associated with caregiving burden. Data were collected through a national survey of informal MS caregivers and analyzed using an ordered logistic regression model to identify factors associated with burden. Burden was found to be significantly greater among male caregivers than among female caregivers. Moreover, greater burden was associated with more frequent patient bladder dysfunction, more hours per week spent providing assistance, and greater restriction on the caregiver's ability to perform daily activities because of caregiving responsibilities. A strong association was found between the mental health status of the caregiver and burden. Health professionals should be sensitive to the impact of caregiving on the mental health of MS caregivers. The resu...
Burden and quality of life in caregivers of persons with multiple sclerosis
Neurologia i Neurochirurgia Polska, 2012
Multiple sclerosis (MS) is the second most common cause of dis ability among nervous system diseases. This disease causes reduced quality of life of patients and those caring for them. Quality of life (QoL) measures consist of at least three broad domains: physical, mental and social. In the field of medicine, researchers have often used the concept of health-related quality of life, which specifically focuses on the impact of an illness and/or treatment on patients' perception of their status of health and on subjective well-being or satisfaction with life. Subjective factors of QoL in MS patients include perception of symptoms, level of fitness, self-image, satisfaction with fami ly life, work, the economic situation, interaction with other people, social support and life in general. Objective factors include the clinical picture of disease, social status, social and living conditions and the number and intensity of social contacts. While many generic and specific questionnaires have been developed to assess QoL in patients with MS, including general fatigue, there is a lack of specific questionnaires assessing QoL of caregivers. In this paper, a review of selected studies on QoL and caregiver burden in MS and a summary of the most popular questionnaires measuring burden and QoL are presented. Special attention is paid to the first questionnaire specific for QoL of carers of persons with MS, CAREQOL-MS by Benito-León et al.
Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis
Multiple Sclerosis, 2009
Little information exists about caregivers of persons with multiple sclerosis (MS). Our aims were to describe the characteristics of a sample of caregivers of persons with MS, assess their perceived burden, health-related quality of life, and investigate factors influencing this burden. We studied 278 caregivers of persons with MS, recruited from a Spanish cross-sectional survey, measuring health-related quality of life by the 36-Item Short-Form Health Survey (SF-36) and burden by the Zarit Caregiver Burden Interview. Of the caregivers, 56.8% were female and their mean age was 50.1 AE 12.6 years. Their main relationship with the person with MS was spouse/partner (52.9%) and son or daughter (25.9%). Caregiver General Health, Mental Health, Bodily Pain, and Role-emotional Functioning were the most affected dimensions on the SF-36. Multiple regression analysis showed that independent and significant predictors of burden were Role-emotional Functioning and Vitality dimensions SF-36 scores of caregivers, and the Expanded Disability Status Scale scores. The total adjusted variance explained by these variables (adjusted R 2 ) was 0.512. Emotional factors and the disability of the person with MS were major predictors of burden. Psychological and social support should be considered to reduce caregiver burden.
The care burden and social support levels of caregivers of patients with multiple sclerosis
Kontakt, 2017
This study aims to identify the relationship between social support, level of disability of patients and burden of care perceived by caregivers of individuals with multiple sclerosis. Methods: This descriptive and cross-sectional study was conducted with family caregivers of patients with multiple sclerosis admitted to the neurology clinic of a university hospital in eastern Turkey. Of the family caregivers of patients with MS, 98 family members participated in the study. The study data were collected using the "Zarit caregiver Burden inventory (ZcBi)", "expanded Disability Status Scale (eDSS)" and "Multidimensional Scale of Perceived Social Support (MSPSS)". Results: The mean burden of care score of the family members was 30.67 ± 15.66, and the mean social support score was found to be 54.88 ± 20.02. A negative significant correlation was found between the mean social support and burden of care scores of caregivers (r =-0.38, p < 0.01). furthermore, a positive correlation between mean burnout scores of caregivers and the loss of ability of the patients was found (r = 0.32, p < 0.01). Conclusion: The burden of care decreases as the social support perceived by the caregivers increases. The burden of caregivers increases with the increasing disability of the patients.
Multiple Sclerosis and Related Disorders
Background: Multiple sclerosis (MS) is a chronic disorder of the central nervous system with an unpredictable disease course. Life partners often become caregivers, which can be both rewarding and challenging, as the caregiver's physical and mental health is often negatively affected. Previous studies on caregiver strain focused on caregivers of persons with MS with relatively high disability levels, while caregiver strain may already be experienced by life partners living with mildly disabled persons with MS. Objective: The current study examines factors associated with caregiver strain in life partners of persons with mild disability due to relapsing-remitting MS. Methods: We included 173 persons with relapsing-remitting MS (79% female; mean age 42.8 years; 90% employed; median EDSS 2.0) and their life partners. The life partners completed questionnaires on caregiver strain and neuropsychiatric and cognitive functioning of the person with MS. The persons with MS completed questionnaires about demographics, fatigue, personality, physical, cognitive and neuropsychiatric functioning, and underwent neuropsychological and neurological examinations. A linear regression analysis was conducted to examine predictors of caregiver strain. Results: 24% of the life partners experienced above average levels of caregiver strain. A multivariate linear regression analysis revealed that a higher age of the person with MS (β = 0.16, p = 0.04), more physical disability (β = 0.17 p = 0.04), more cognitive and neuropsychiatric problems of the person with MS as reported by