METHODS: The Multiple Sclerosis International Federation third edition of the Atlas of MS was a survey that assessed the current global state of diagnosis including adoption of MS diagnostic criteria; barriers to diagnosis with respect to the patient, health care provider, and health system; and existence of national guidelines or national standards for speed of MS diagnosis.
RESULTS: Coordinators from 107 countries (representing approximately 82% of the world population), participated. Eighty-three percent reported at least 1 "major barrier" to early MS diagnosis. The most frequently reported barriers included the following: "lack of awareness of MS symptoms among general public" (68%), "lack of awareness of MS symptoms among health care professionals" (59%), and "lack of availability of health care professionals with knowledge to diagnose MS" (44%). One-third reported lack of "specialist medical equipment or diagnostic tests." Thirty-four percent reported the use of only 2017 McDonald criteria (McD-C) for diagnosis, and 79% reported 2017 McD-C as the "most commonly used criteria." Sixty-six percent reported at least 1 barrier to the adoption of 2017 McD-C, including "neurologists lack awareness or training" by 45%. There was no significant association between national guidelines pertaining to MS diagnosis or practice standards addressing the speed of diagnosis and presence of barriers to early MS diagnosis and implementation of 2017 McD-C.
DISCUSSION: This study finds pervasive consistent global barriers to early diagnosis of MS. While these barriers reflected a lack of resources in many countries, data also suggest that interventions designed to develop and implement accessible education and training can provide cost-effective opportunities to improve access to early MS diagnosis.
METHODS: The European Academy of Neurology (EAN) task force (TF) met nine times between November 2021 and June 2023. During the 2023 EAN annual meeting, attendees were asked to answer five questions concerning the future of GN. The document was sent for suggestions and eventually approval to the board and the presidents of the 47 national societies of the EAN.
RESULTS: The TF first identified four relevant current and future challenges related to GN: (i) definition, (ii) practice, (iii) education, and (iv) research. The TF then identified seven initiatives to further develop GN at both the academic and community level. Finally, the TF formulated 16 recommendations to promote GN in the future.
CONCLUSIONS: GN will remain essential in the coming decades to provide rapid, accessible, and comprehensive management of patients with ND that is affordable and cost-effective. There is also a need for research, education, and other initiatives aiming to facilitate improved working conditions, recognition, and prestige for those pursuing a career in GN.
METHODS: This study consisted of 3 steps; the formulation of ASMaQ draft, content validation and construct validity. A total of 110 questions were drafted with 5-point Likert scale answers. From the list, 31 were selected and subsequently tested on 158 participants. The results were analysed and validated using exploratory factor analysis on SPSS. Components were extracted and questions with low factor loading were removed. The internal consistency was then measured with Cronbach's alpha.
RESULTS: Following analysis, 3 components were extracted and named as general stroke knowledge, hyperacute stroke care and advanced stroke management. Two items were deleted leaving 29 out of 31 questions for the final validated ASMaQ. Internal consistency showed high reliability with Cronbach's alpha of 0.82. Our respondents scored a total cumulative mean of 113.62 marks or 66.6%. A sub analysis by occupation showed that medical assistants scored the lowest in the group with a score of 57% whilst specialists including neurologists scored the highest at 79.4%.
CONCLUSION: The ASMaQ is a newly developed and validated questionnaire consisting of 29 questions testing the respondents' acute stroke management knowledge.
OBJECTIVE: The researchers believed that culturally sensitive video narratives, which catered to a specific niche, would reveal a personalized impact on medication adherence. Therefore, this study aimed to develop and validate video narratives for this purpose.
METHODS: This study adapted the Delphi method to develop a consensus on the video scripts' contents based on learning outcomes and HBM constructs. The panel of experts comprised 8 members representing professional stroke disease experts and experienced poststroke patients in Malaysia. The Delphi method involved 3 rounds of discussions. Once the consensus among members was achieved, the researchers drafted the initial scripts in English, which were then back translated to the Malay language. A total of 10 bilingual patients, within the study's inclusion criteria, screened the scripts for comprehension. Subsequently, a neurologist and poststroke patient narrated the scripts in both languages as they were filmed, to add to the realism of the narratives. Then, the video narratives underwent a few cycles of editing after some feedback on video engagement by the bilingual patients. Few statistical analyses were applied to confirm the validity and reliability of the video narratives.
RESULTS: Initially, the researchers proposed 8 learning outcomes and 9 questions based on HBM constructs for the video scripts' content. However, following Delphi rounds 1 to 3, a few statements were omitted and rephrased. The Kendall coefficient of concordance, W, was about 0.7 (P
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: To survey the current global clinical practice of clinicians treating MOGAD.
METHOD: Neurologists worldwide with expertise in treating MOGAD participated in an online survey (February-April 2019).
RESULTS: Fifty-two responses were received (response rate 60.5%) from 86 invited experts, comprising adult (78.8%, 41/52) and paediatric (21.2%, 11/52) neurologists in 22 countries. All treat acute attacks with high dose corticosteroids. If recovery is incomplete, 71.2% (37/52) proceed next to plasma exchange (PE). 45.5% (5/11) of paediatric neurologists use IV immunoglobulin (IVIg) in preference to PE. Following an acute attack, 55.8% (29/52) of respondents typically continue corticosteroids for ≥ 3 months; though less commonly when treating children. After an index event, 60% (31/51) usually start steroid-sparing maintenance therapy (MT); after ≥ 2 attacks 92.3% (48/52) would start MT. Repeat MOG antibody status is used by 52.9% (27/51) to help decide on MT initiation. Commonly used first line MTs in adults are azathioprine (30.8%, 16/52), mycophenolate mofetil (25.0%, 13/52) and rituximab (17.3%, 9/52). In children, IVIg is the preferred first line MT (54.5%; 6/11). Treatment response is monitored by MRI (53.8%; 28/52), optical coherence tomography (23.1%; 12/52) and MOG antibody titres (36.5%; 19/52). Regardless of monitoring results, 25.0% (13/52) would not stop MT.
CONCLUSION: Current treatment of MOGAD is highly variable, indicating a need for consensus-based treatment guidelines, while awaiting definitive clinical trials.