Employment of patients with multiple sclerosis: the influence of psychosocial-structural coping and context

Vijayasingham, Lavanya; Mairami, Fatima Fanna

doi:10.2147/dnnd.s131729

Cited by 37 publications

(30 citation statements)

References 81 publications

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“…Factors in the work environment that may enable PwMS to stay in their job include flexible or reduced hours or workload when necessary [31], flexible deadlines, being able to take additional breaks or work from home [11]. Social and structural features to support PwMS to find or maintain adequate employment may include good access to health care, welfare provisions, antidiscrimination legislative protection, and vocational services [32]. Therefore, employment loss is likely caused by an interplay of MS-related factors as well as working environment and employer flexibility [30].…”

Section: Discussionmentioning

confidence: 99%

Predictors of Change in Employment Status and Associations with Quality of Life: A Prospective International Study of People with Multiple Sclerosis

et al. 2019

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Purpose This prospective international study aimed to assess the changes in employment, and predictors thereof, and associated change in mental health quality of life in people with multiple sclerosis (MS). Methods People with MS were recruited online through social media, forums and newsletters to complete an online English-language survey in 2012 and again in 2015, to assess changes in employment and clinical characteristics. Results 1276 people with MS of working age were included of whom 35.9% were employed full time, 25.6% part-time, 3.1% were unemployed and seeking employment, 19.7% were retired due to disability and 15.7% were not in the labour force. Part/full time employment decreased from 61.4 to 57.1% of the sample 2.5 years later, and 25.5% experienced some change in employment status. Lower level of education and higher level of disability at baseline predicted loss of employment at follow-up. 62.0% of the sample indicated that MS impacted on employment over their lifetime, associated with a lower level of education and progressive MS at time of diagnosis. Retiring due to disability was predictive of a decreased mental health related QOL score. Conclusion Employment status was negatively impacted by MS for most participants. We showed for the first time that employment loss was prospectively associated with poorer mental health related quality of life. Employment support including vocational services, reasonable flexibility in the workplace, and legal protection against discrimination should be widely available to assist people with MS, especially for those with progressive onset MS, higher disability and lower levels of education who are at higher risk of employment loss.

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Section: Discussionmentioning

confidence: 99%

Predictors of Change in Employment Status and Associations with Quality of Life: A Prospective International Study of People with Multiple Sclerosis

et al. 2019

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“…Around 50% of MS patients are unemployed 10 years after diagnosis. Factors leading to unemployment include increasing disease severity, increasing age, and functional changes [19]. In our study, 61.2% were unemployed.…”

Section: Discussionmentioning

confidence: 46%

Assessment of the Burden of Multiple Sclerosis Patients' Caregivers in Saudi Arabia

Algahtani

Shirah

Bayazeed

et al. 2020

Cureus

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Introduction Multiple sclerosis (MS) is a disease that constitutes a high burden on both patients and caregivers. Although many studies have assessed the burden of MS caregivers worldwide, no such studies have been conducted in Saudi Arabia. In this study, we aim to assess the burden of MS patients' caregivers in Saudi Arabia. Methods This cross-sectional study included caregivers of MS patients (for >1 year) who visited the neurology clinic at King Abdulaziz Medical City, Jeddah, Saudi Arabia, between July 2017 and December 2018. The study utilized the Zarit Burden Interview (ZBI) to assess the burden on MS patients' caregivers. In addition, the caregivers' demographic profile and certain information regarding the patient were also collected through an oral interview. Results There were a total of 219 respondents, of which 117 (53.4%) male caregivers. For ZBI, the majority of caregivers reported little or no burden (57.1%), followed by a mild to moderate burden (30.1%), then a moderate to severe burden (10.5%), and only five (2.3%) reported a severe burden. Conclusion Our results showed a limited burden of MS on the life caregivers of MS patients. We stress the importance of assessing the burden in MS patients and caregivers as routine practice with the other important measures such as quality of life and medication compliance. The finding of this study will help in encouraging medical centers to establish more specialized MS clinics that put into consideration the psychological factors, burden of the disease, multidisciplinary approach, and support groups, which are currently few in number.

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“…Health care services should consider the benefits of an agile infusion service that supports continued employment and the psychological impact of nonemployment. 15,16 Thirty-six percent of the employed or studying respondents preferred infusion times after noon, in contrast to only 17% of those not working or studying. However, working and studying respondents are slightly less likely to prefer/consider home infusions.…”

Section: O N L I N E F I R S Tmentioning

confidence: 99%

Patient Preferences for Time and Location of Infusible Therapies in Multiple Sclerosis and Neuroimmunologic Disorders

Rath¹,

Campagna²,

Stankovich³

et al. 2020

International Journal of MS Care

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Background: People with multiple sclerosis and neuroimmunologic disorders (herein referred to as patients) are increasingly treated with infusible monoclonal antibodies. This rise in demand has placed increased loads on current infusion services and mandates careful strategic planning. This study examined patient preferences for the timing and location of infusions and their association with demographic and disease variables to facilitate patient-focused strategic planning. Methods: Ninety-one patients receiving an infusible therapy at an infusion service during March 2019 were asked to complete a questionnaire exploring eight domains, including preferences for time of infusions and location of infusion centers. Potential access to home-based treatment was included as an option. Unstructured (free-text) feedback on current service was also obtained. Results: Eighty-three patients completed the survey (mean age, 42 years; 75% women). Infusions were predominantly natalizumab (66%) and ocrelizumab (25%). Of these patients, 71% were engaged in some form of work or study, and 83% of this group had to arrange time off from work or study to attend treatment. Seventy percent of patients would prefer their infusion before noon, and 60% would consider home-based infusions. Most used a car as their transport to the infusion service. Conclusions: These results suggest that patients are more likely to prefer infusible treatment in the morning and are open to home-based infusions. This study provides information for health services to target service delivery at peak preference times and consider alternate ways of delivering infusible treatments.

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Employment of patients with multiple sclerosis: the influence of psychosocial-structural coping and context

Cited by 37 publications

References 81 publications

Predictors of Change in Employment Status and Associations with Quality of Life: A Prospective International Study of People with Multiple Sclerosis

Predictors of Change in Employment Status and Associations with Quality of Life: A Prospective International Study of People with Multiple Sclerosis

Assessment of the Burden of Multiple Sclerosis Patients' Caregivers in Saudi Arabia

Patient Preferences for Time and Location of Infusible Therapies in Multiple Sclerosis and Neuroimmunologic Disorders

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