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

Abstract

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.

Communication, Coordination, and Security for People with Multiple Sclerosis (COCOS-MS): a randomised phase II clinical trial protocol

“… 53 The Zarit Burden Interview (ZBI) has been used to assess the burden of caregivers of patients with MS associated with functional or behavioural impairments and the home care situation and can be requested from the Mapi Research Trust organisation. 54 …”

“…MS has a high burden on caregivers,52 which is influenced by a multitude of factors including the severity of the disease, type of disease, severity of symptoms and social support, all of which, can, in turn, affect QoL and mental and physical health of caregivers 53. The Zarit Burden Interview (ZBI) has been used to assess the burden of caregivers of patients with MS associated with functional or behavioural impairments and the home care situation and can be requested from the Mapi Research Trust organisation 54…”

Psychoeducational Interventions for Caregivers of Persons With Multiple Sclerosis: Protocol for a Randomized Trial

“…Investigators for the project who had expertise in the areas of caregiving (SLD and ARL), multiple sclerosis (MP, TP, and MJL), and website interventions (TP and MJL) developed the content for the project. The development of the video vignettes was based on previous research that identified the unique needs of caregivers of persons with multiple sclerosis [ 5 , 7 - 10 , 21 , 22 ], general caregiving research [ 26 - 31 ], and answers to a series of questions emailed to caregivers of persons with multiple sclerosis. The website developers oversaw the development and testing of the video vignettes and the overall website.…”

“…Research examining the needs of caregivers of persons with multiple sclerosis has highlighted the need to reduce caregiver distress and sense of burden [ 5 , 17 , 21 , 22 ] (which often precede caregiver anxiety and depression), provide information relevant to caring for a person with multiple sclerosis [ 5 , 23 ], and provide information and skills to facilitate communication [ 24 , 25 ]. Strategies that include psychoeducational programs providing information and support have shown promise [ 5 , 9 , 20 ].…”

“…A tailored psychoeducational intervention can alleviate some of this stress [ 40 ] by providing web-based information—available 24 hours per day, 7 days per week to address questions and concerns of caregivers of persons with multiple sclerosis. In addition, individualized coaching from trained professionals familiar with the needs of this caregiver group may enhance their sense of self-efficacy as a caregiver and decrease distress, anxiety, depression, and negative emotions [ 5 , 21 , 44 , 52 , 53 ].…”