METHODS: A systematic review was conducted to include all relevant published MS/ NMOSD studies in the SEA indexed in MEDLINE, Embase, Scopus and CENTRAL from the inception of these databases to August 1, 2019. Quantity of research productivity was measured in terms of the total published documents. Quality of research impact was evaluated by assessing the study designs of the published reports, publications in journals with impact factor (IF) and PlumX Metrics (citations, usage, captures, mentions and social medias). Population size, gross domestic product (GDP) per capita, percentage (%) of GDP allocated to research and development (R&D), and the total number of neurologists reported in each country were obtained from reliable published data.
RESULTS: Out of 3,547 articles identified, only 142 articles fulfilled the eligibility criteria; therefore, the total number of publications in the SEA region related to MS/ NMOSD was deemed low in quantity. Most studies were cross-sectional and case reports/ series; hence, most studies offered low level of evidence. Since the aggregate scores in citations, usage, captures, mentions, and social medias in PlumX Metrics and publications in journals with IF were low, the overall quality of the published articles was considered low. Thailand (57 articles), Malaysia (40) and Singapore (29) contributed to the majority of publications on the topic-. GDP per capita was statistically correlated with usage. Percent GDP for R&D was positively correlated with total publications, usage, captures and social mediaindices.
CONCLUSION: In conclusion, the scientific impact of MS/ NMOSD in the SEA was considered low in quantity and quality. This study must encourage researchers in the SEA to produce greater volumes of high-quality publications in this particular field and motivate governments to increase % GDP for R&D for the benefit of patients suffering fromthese rare and disabling conditions.
OBJECTIVE: This study aims to examine and contrast the perceptions of MS patients, neurologists, and palliative care physicians towards providing palliative care for patients with MS in Malaysia.
METHODS: 12 MS patients, 5 neurologists, and 5 palliative care physicians participated in this qualitative study. Each participant took part in a semi-structured interview. The interviews were transcribed verbatim, and analysed using an iterative thematic analysis approach.
RESULTS: Patients and neurologists mostly associated palliative care with the end-of-life and struggled to understand the need for palliative care in MS. Another barrier was the lack of understanding about the palliative care needs of MS patients. Palliative care physicians also identified the scarcity of resources and their lack of experience with MS as barriers. The current referral-based care pathway itself was found to be a barrier to the provision of palliative care.
CONCLUSIONS: MS patients in Malaysia face several barriers in accessing palliative care. Overcoming these barriers will require improving the shared understanding of palliative care and its role in MS. The existing care pathway also needs to be reformed to ensure that it improves access to palliative care for MS patients.
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.
MATERIALS AND METHODS: After searching the records for a 15-year period at the London Health Sciences Centre Pathology Department, we identified 8 cases of surgical acute lesion biopsies in which clinical MS diagnoses were made before or after the biopsy.
RESULTS: The white matter pathologies in these cases could be sorted into 3 morphological patterns. The first pattern, which represents typical demyelinated plaques, was observed in 4 cases and was characterised by nearly complete demyelination accompanied by variable degrees of axon preservation and axonal swelling. The second pattern was observed in 3 cases and was characterised by demyelinating lesions containing variable numbers of myelinated axons mixed with a few demyelinated axons and variable numbers of axonal swellings. The myelinated axons ranged from scattered fibres to bands of variable thickness, and the demyelination was a mixture of primary and secondary demyelination. The third pattern was observed in 1 case and was characterised by well-demarcated areas of reduced myelin staining and numerous apoptotic nuclei. Axonal staining revealed many fragmented axons with reduced myelin staining but no definitely demyelinated axons.
CONCLUSIONS: This report shows that the predominant pathology underlying acute MS-related lesions is not limited to demyelination but can include axonal degeneration alone or in combination with primary demyelination which reflect different pathogenesis for these acute lesions.
OBJECTIVE: This study aims to (1) measure the cost of health resources utilization by MS patients and (2) to examine the difference in utilization and its attributed costs amongst patients who may have a different course of MS and expanded disability status scale (EDSS) scores.
METHODS: A cross-sectional study using Kuwait National MS registry was conducted to estimate the costs of utilization of resources from 2011 to 2015.
RESULTS: Between the period 2011-2015, 1344 MS patients were included in the registry. The average annual cost per MS patient has increased from $10,271 in 2011 to $17,296 in 2015. Utilization of disease-modifying therapies (DMTs) was the main driver of costs reaching 89.9% in 2015. Throughout the five-year period, the occurrence of relapses decreased from 21.8% to 12.2% (p <0.0001). During this same period, ambulatory relapse treatment increased by 5.8% while hospitalizations decreased by 2.6%. Patients with a moderate EDSS score (3.5-6) had the highest average cost (p<0.0001) compared to mild and severe EDSS scores.
CONCLUSIONS: Multiple sclerosis has been a significant economic burden on the Kuwait healthcare system. DMTs are the main driver of cost.