Living with a neglected neurological disease: a qualitative study of patients with multiple sclerosis in Malaysia

BACKGROUND: The needs of patients with multiple sclerosis have been well-studied in high-income, high-prevalence countries but few studies have been based in low- and middle-income countries where resources are relatively scarce. As such, little is known about the needs of patients living in these countries.

OBJECTIVE: The study seeks to develop an understanding of the needs of patients with multiple sclerosis living in Malaysia in order to generate insights and contribute to a global database of patients' experience.

METHOD: 12 patients with multiple sclerosis participated in this qualitative study and took part in a semi-structured interview. The interviews were transcribed and analysed using an iterative thematic analysis approach.

RESULTS: The experiences, challenges and needs of the patients were reported. Five themes were developed (Daily living, Financial, Emotional and psychological, Healthcare, and Family). These predominantly revolved around the struggles of coping and adapting to the symptoms and disabilities imposed by multiple sclerosis, their heavy reliance on personal finances to cope with the increased costs of living for themselves and their families, as well as the limited healthcare services and treatments available to help them to manage the physical and emotional symptoms of multiple sclerosis.

CONCLUSION: Patients with multiple sclerosis in Malaysia have complex needs that are neglected due perceived lack of importance of the disease and the poor understanding of multiple sclerosis in general. Patients rely heavily on their finances to improve their quality of life. This perpetuates health inequities and reform of the national health financing system is needed to provide patients with the healthcare and support they need.Implications for rehabilitationPatients with multiple sclerosis in Malaysia prioritize being able to cope and adapt to their disabilities in order to continue performing their activities of daily living.There is a need to increase the availability and accessibility of healthcare professionals that are experienced with the management of multiple sclerosis.Healthcare professionals need to improve their understanding of the patients' needs and what they consider to be important in order to provide therapy that is effective and relevant.Patients also require financial support to help them with the increased costs of living associated with MS as well as the costs of healthcare services such as physiotherapy and rehabilitation.