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.
METHOD: This MSBase cohort study of AQP4-IgG+NMOSD patients examined modifiers of relapse in a multivariable proportional hazards model and expanded disability status score (EDSS) using a mixed effects model.
RESULTS: 206 AQP4-IgG+ patients were included (median follow-up 3.7 years). Age (hazard ratio [HR] = 0.82 per decade, p = 0.001), brainstem onset (HR = 0.45, p = 0.009), azathioprine (HR = 0.46, p<0.001) and mycophenolate mofetil (HR = 0.09, p = 0.012) were associated with a reduced risk of relapse. A greater EDSS was associated with age (β = 0.45 (per decade), p<0.001) and disease duration (β = 0.07 per year, p<0.001). A slower increase in EDSS was associated with azathioprine (β = -0.48, p<0.001), mycophenolate mofetil (β = -0.69, p = 0.04) and rituximab (β = -0.35, p = 0.024).
INTERPRETATION: This study has demonstrated that azathioprine and mycophenolate mofetil reduce the risk of relapses and disability progression is modified by azathioprine, mycophenolate mofetil and rituximab. Age and disease duration were the only patient characteristics that modified the risk of relapse and disability in our cohort.
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.
METHODS: In the randomized, double-blind, time-to-event, phase 3 PREVENT trial, 143 adults received eculizumab (maintenance dose, 1200 mg/2 weeks) or placebo (2:1), with stable-dose concomitant immunosuppressive therapy (IST) permitted (except rituximab and mitoxantrone). Post hoc analyses of relapses and adverse events were performed for prespecified and post hoc subgroups based on concomitant IST and prior rituximab use, demographic and disease characteristics, and autoimmune comorbidity.
RESULTS: The significant reduction in relapse risk observed for eculizumab versus placebo in the overall PREVENT population was consistently maintained across subgroups based on concomitant IST and previous rituximab use, age, sex, region, race, time since clinical onset of NMOSD, historical annualized relapse rate, baseline Expanded Disability Status Scale score, and history of another autoimmune disorder. The serious infection rate was lower with eculizumab than placebo regardless of rituximab use in the previous year, concomitant IST use, or history of another autoimmune disorder.
CONCLUSION: Across a wide range of clinically relevant AQP4+ NMOSD patient subgroups in PREVENT, eculizumab therapy was consistently effective versus placebo in reducing relapse risk, with no apparent increase in serious infection rate.
TRIAL REGISTRATION: NCT01892345 (ClinicalTrials.gov).
METHODS: A comprehensive literature search on October 1st, 2020, was performed in PubMed, Scopus, and Web of Science to retrieve original population-based studies on MS epidemiology in the Asian and Oceanian countries, published between January 1st, 1985 and October 1st, 2020. The designed search strategy was repeated for each country, and the relevant referenced articles were added to our database. A random-effect model was used to combine the epidemiological estimates, and subgroup analysis was also performed by continent, region, and country, when possible. Meta-regression analysis was done to evaluate the effects of Human Developmental Index (HDI), latitude, and study period on the epidemiologic parameters.
RESULTS: A total of 3,109 publications were found, of which 89 articles met the eligibility criteria and were included for data extraction. These articles provided data on prevalence, incidence, and mean age at disease onset in 18 countries in Asia and Oceania, including Iran, Turkey, Cyprus, Kuwait, Saudi Arabia, Qatar, UAE, Jordan, Israel, India, Malaysia, China, Hong Kong, Taiwan, Republic of Korea, Japan, Australia, and New Zealand. The pooled total prevalence, incidence, and mean age of onset in Asia and Oceania were 37.89/100000 (95% CI: 35.65 - 40.142), 2.40/100000 (95% CI: 2.22 - 2.58), and 28.21 (95% CI: 27.55 - 28.88), respectively. MS prevalence and incidence in the female gender (68.7/100000 and 4.42/100000, respectively) were infinitely higher than in the male gender (24.52/100000 and 2.06/100000, respectively). Our subgroup analysis showed that MS was much more prevalent in Australia and West Asia among the studied area. The meta-regression showed that the total incidence decreased with an increase in the HDI, and the total prevalence in Asia increased with increasing latitude gradients. Also, the study period had a positive effect on the total prevalence and incidence in Asia and Oceania.
CONCLUSION: MS prevalence and incidence have increased in recent decades. This study highlights the need for further studies to elucidate MS's geographical and temporal variations' exact etiologies.
METHOD: MRI brain of patients with a diagnosis of IIDDs presented to the Hospital from 2010 to 2015 was analysed. The MRI was assessed by 2 radiologists blinded to the AQP4 status, on features said to be typical of NMOSD and MS.
RESULTS: Thirty nine patients fulfilled the criteria and were included in the study. They consisted of 19 AQP4 seropositive and 20 AQP4 seronegative patients. The mean age was older (37.0 vs. 28.8 years) among the AQP4 positive group. The majority of the patients were ethnic Chinese (72%), followed by the Malays and Indians. Those with AQP4 seropositive status generally has less brain lesions, and significantly less fulfilling the McDonald DIS criteria as compared to those with AQP4 seronegative status (15.8% vs. 60.0%, p=0.005). None of the seven cerebral MRI features highlighted in NMOSD 2015 diagnostic criteria, said to be characteristic of NMOSD was more common among the AQP4 positive patients. These features were in fact seen less frequently among the AQP4 seropositive patients. An example was the extensive hemispheric lesion seen in 10.5% of AQP4 seropositive patients vs. 45% of that AQP4 seronegative group.
CONCLUSION: There was no characteristic MRI brain features in the Malaysian AQP4 seropositive IIDD patients versus those who are seronegative. This could be a reflection of ethnical difference.
OBJECTIVES: We aim to determine the prevalence, demographic and clinical characteristics of MOG antibody disease (MOGAD) specifically identifying any ethnic variations unique to our local population, with global perspectives.
METHODS: This is a cross-sectional study conducted at the Neurology Department, Kuala Lumpur Hospital from January 2018 to January 2021. Out of 750 CNS IIDDs, seventy-eight consecutive anti-AQP4 antibody negative NMOSD/high risk undifferentiated relapsing or monophasic CNSIIDD subjects were tested for anti-MOG.
RESULTS: Anti-MOG was positive in thirty six out of seventy-eight (%)(46.1%) seronegative patients. The prevalence of MOGAD in our Malaysian population is 0.12 per 100,000 persons with less marked female preponderance of 2:1 and younger age at onset of 23.8 ± 14.4 years. Despite a predominantly ethnic Malay population, a high proportion of our MOGAD patients were Indian (Proportion of Malay:Chinese:Indian:others; 16:9:10:1, prevalence 0.5 per 100,000 population for Indians) with favourable disease course in the most with minor exceptions. Monophasic and relapsing disease course was seen in 11.2% and 88.8% of patients respectively. However, fulminant aggressive disease can occur especially amongst the Chinese and paediatric cohorts. Optic neuritis, NMOSD and ADEM were the commonest presentations at onset and first relapse. EDSS at diagnosis, first relapse, and last follow-up were 4.5±2.5, 3±2.0, and 1.75(range 1-3). Neuroimaging showed large, fluffy, PRES- like supratentorial cortical, periventricular deep white matter ,diencephalon lesions,enhancing anterior optic nerve with or without chiasmal sparring lesions and cervical/cervicothoracic involvement. Area post rema lesions were rare. Threshold steroid levels exist relapsing on withdrawal some fulminantly requiring Immunosuppressants(rituximab) and intravenous immunoglobulins to maintain remission.
CONCLUSION: Malaysian MOGAD profile was similar to its international descriptions of the disease with ethnic selectivity for Indians. Prolonged steroid maintenance is essential to prevent relapses. Fulminant aggressive cases of MOGAD especially amongst Paediatric patients and the Chinese cohort have been reported.
METHODS: (1) A population-based study was undertaken to estimate NMOSD prevalence in the multi-ethnic Penang Island, Malaysia, comprising Chinese, Malays, and Indians. Medical records of NMOSD patients followed up at the Penang General Hospital (the neurology referral centre in Penang Island) were reviewed. The 2015 diagnostic criteria of the International Panel for NMO Diagnosis were used for case ascertainment. (2) A review of population-based prevalence studies of NMOSD worldwide was carried out. PubMed and conference proceedings were searched for such studies.
RESULTS: Of the 28 NMOSD patients, 14 were residents of Penang Island on prevalence day [13 (93%) Chinese and one (7%) Malay]. All 14 patients were females and aquaporin 4 seropositive. The prevalence of NMOSD in Penang Island was 1.99/100,000 population; according to ethnicities, the prevalence in Chinese was significantly higher than in Malays (3.31/100,000 vs 0.43/100,000, respectively, p = 0.0195).
CONCLUSION: Based on our and other population-based studies, among Asians, East Asian origin populations (Chinese and Japanese) appear to have higher NMOSD prevalence than other Asian ethnic groups. Worldwide, Blacks seem to have the highest NMOSD prevalence. More studies in different geographical regions and ethnic groups will be useful to further inform about potential factors in NMOSD pathogenesis.
OBJECTIVE: Our study aimed to examine and contrast the clinical and radiological characteristics of TDL, high-grade gliomas (HGG) and primary CNS lymphoma (CNSL).
METHOD: This was a retrospective review of 66 patients (23 TDL, 31 HGG and 12 CNSL). Clinical and laboratory data were obtained. MRI brain at presentation were analyzed by two independent, blinded neuroradiologists.
RESULTS: Patients with TDLs were younger and predominantly female. Sensorimotor deficits and ataxia were more common amongst TDL whereas headaches and altered mental status were associated with HGG and CNSL. Compared to HGG and CNSL, MRI characteristics supporting TDL included relatively smaller size, lack of or mild mass effect, incomplete peripheral rim enhancement, absence of central enhancement or restricted diffusion, lack of cortical involvement, and presence of remote white matter lesions on the index scan. Paradoxically, some TDLs may present atypically or radiologically mimic CNS lymphomas.
CONCLUSION: Careful evaluation of clinical and radiological features helps in differentiating TDLs at first presentation from CNS neoplasms.
OBJECTIVE: To evaluate the effect of tele-Pilates and tele-yoga training on physical and mental factors and QOL in PwMS, with a focus on two phenotype classifications - relapsing-remitting MS (RRMS) and secondary progressive MS (SPMS).
METHODS: Eighty-two persons with RRMS (n = 48) and SPMS (n = 34) were randomly assigned into tele-Pilates (n = 29), tele-yoga (n = 26), or control (n = 27). The tele-exercis training was conducted three times per week for eight weeks.
RESULTS: Significant time × group interactions were observed for QoL (p = 0.01), physical activity levels (p < 0.001), mental health (p = 0.05), and a decline in depression (p = 0.002) following tele-Pilates and tele-yoga. The corresponding subfactors, including pain, energy, emotional well-being, and role limitation due to emotional and physical problems, have shown significant improvements after interventions compared with control (all p < 0.05). The effects of exercise over control did not depend on MS phenotype (all p > 0.05).
DISCUSSION: Tele-yoga and tele-Pilates exercises improved QoL and mental and physical health in PwMS, and the benefits were similar across both MS phenotypes. These findings highlight the potential of implementing tele-yoga and tele-Pilates as non-pharmacological mind-body symptomatic treatments for individuals with both RRMS and SPMS.
METHODS: The survey questionnaire, comprising of 15 closed-ended and five open-ended questions, was developed by three neurologists with expertise in MS and routine MS patient management, or had training in neuroimmunology. Questionnaire development was guided by the recent Atlas of MS and in alignment with the Access to Treatment framework, focusing on MS diagnosis and treatment issues in SEA. Fifteen neurologists experienced in managing MS across the region were identified as key informants for this study.
RESULTS: All fifteen neurologists participated in the survey via email and videoconferencing between January 2020 and February 2023, which included the following countries: Brunei, Cambodia, Indonesia, Malaysia, Myanmar, Lao PDR, Philippines, Singapore, Thailand, Timor-Leste, and Vietnam. All had at least five years of experience in managing MS patients and six had previously completed a neuroimmunology fellowship programme. SEA countries showed disparities in healthcare financing, availability of neurologists, MS treatments, and investigative tools. Access to MS disease-modifying treatments (DMTs) is hindered by high cost, lack of MS specialists, and weak advocacy efforts. On-label DMTs are not listed as essential medicines regionally except for interferon beta1a and teriflunomide in Malaysia. On-label monoclonals are available only in Malaysia, Singapore, and Thailand. Generic on-label DMTs are unavailable due to lack of distributorship and expertise in using them. Off-label DMTs (azathioprine, methotrexate, and rituximab) predominate in most SEA countries. Other challenges include limited access to investigations, education, and knowledge about DMTs among general neurologists, and absence of registries and MS societies. Patient champions, communities, and MS organisations have limited influence on local governments and pharmaceutical companies. Despite its increasing prevalence, there is a lack of concerted priority setting due to MS being perceived as a rare, non-communicable disease.
CONCLUSION: This study highlights the distinct dynamics, challenges, and research gaps within this region, and provides suggestions to improve MS diagnosis, education, and medicine access.