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. 2023 Aug 8;101(6):e624-e635.
doi: 10.1212/WNL.0000000000207481. Epub 2023 Jun 15.

Global Barriers to the Diagnosis of Multiple Sclerosis: Data From the Multiple Sclerosis International Federation Atlas of MS, Third Edition

Andrew J Solomon  1 , Ruth Ann Marrie  2 , Shanthi Viswanathan  2 , Jorge Correale  2 , Melinda Magyari  2 , Neil P Robertson  2 , Deanna R Saylor  2 , Wendy Kaye  2 , Lindsay Rechtman  2 , Eunchan Bae  2 , Russell Shinohara  2 , Rachel King  2 , Joanna Laurson-Doube  2 , Anne Helme  2
Affiliations

Global Barriers to the Diagnosis of Multiple Sclerosis: Data From the Multiple Sclerosis International Federation Atlas of MS, Third Edition

Andrew J Solomon et al. Neurology. .

Abstract

Background and objectives: Recent data suggest increasing global prevalence of multiple sclerosis (MS). Early diagnosis of MS reduces the burden of disability-adjusted life years and associated health care costs. Yet diagnostic delays persist in MS care and even within national health care systems with robust resources, comprehensive registries, and MS subspecialist referral networks. The global prevalence and characteristics of barriers to expedited MS diagnosis, particularly in resource-restricted regions, have not been extensively studied. Recent revisions to MS diagnostic criteria demonstrate potential to facilitate earlier diagnosis, but global implementation remains largely unknown.

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.

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Conflict of interest statement

A.J. Solomon participates in contracted research with Sanofi, Biogen, Novartis, Actelion, and Genentech/Roche, receives research support from Bristol Myers Squibb, personal compensation for consulting for Genentech, Biogen, Alexion, Celgene, Greenwich Biosciences, Horizon Therapeutics, TG Therapeutics, and Octave Bioscience, personal compensation nonpromotional speaking for EMD Serono, and provides expert witness testimony. R.A. Marrie receives research funding from CIHR, Research Manitoba, Multiple Sclerosis Society of Canada, Multiple Sclerosis Scientific Foundation, Crohn's and Colitis Canada, National Multiple Sclerosis Society, CMSC, the Arthritis Society and US Department of Defense. She is a coinvestigator on a study partially funded by Biogen Idec and Roche (no funds to her or her institution). She is supported by the Waugh Family Chair in Multiple Sclerosis. S. Viswanathan participates in contracted research with Alexion, Novartis, Sanofi, and Roche. J. Correale has received financial compensation for academic presentations, assistance to advisory boards, financial support for clinical and basic research, and travel assistance to congresses from the following companies: Biogen, Merck, Novartis, Roche, Bayer, Sanofi-Genzyme, Gador, Raffo, Bristol Myers Squibb, and Janssen. M. Magyari has served in scientific advisory board for Sanofi, Novartis, and Merck and has received honoraria for lecturing from Biogen, Merck, Novartis, Roche, Genzyme, and Bristol Myers Squibb. N. Robertson has received honoraria and/or support to attend educational meetings from Biogen, Novartis, Janssen, Genzyme, and Roche. His institution has also received research support from Biogen, Novartis, and Sanofi. D. Saylor has received funding from the National Multiple Sclerosis Society. W.E. Kaye receives funding from the Agency for Toxic Substances and Disease Registry, the National Multiple Sclerosis Society, the Association for the Accreditation of Human Research Protection Programs, and Rockefeller University. L. Rechtman and E. Bae have no disclosures to report. R.T. Shinohara receives consulting income from Octave Bioscience and compensation for scientific reviewing from the American Medical Association, the NIH, the Department of Defense, and the Emerson Collective. R. King, J. Laurson-Doube, and A. Helme have no disclosures to report. Go to Neurology.org/N for full disclosures.

Figures

Figure 1
Figure 1. Potential Patient–Related, Health Professional–Related, and Health Care System–Related Barriers on the Diagnostic Pathway to MS Assessed by the Third Atlas of MS
Superscript numbers indicate the Atlas question number that assessed each specific potential barrier to diagnosis. MS = multiple sclerosis.
Figure 2
Figure 2. Countries That Provided Clinical Management Data for the Atlas of MS Third Edition
MS = multiple sclerosis.
Figure 3
Figure 3. Use of MS Diagnostic Criteria
(A) Responses to the query for all MS diagnostic criteria currently used by providers (may select more than 1 response). (B) Responses to a second question querying the single “most commonly” used MS diagnostic criteria by providers, demonstrating the proportion indicating 2017 McDonald criteria. (C) Responses regarding why 2017 McDonald criteria is not being used or not being used all the time by providers in the country (may select more than 1 response). MS = multiple sclerosis.
Figure 4
Figure 4. Major Barriers to Early MS Diagnosis
(A) Responses to query regarding major barriers that prevent early diagnosis of MS (may indicate more than 1), and further responses obtained in a follow-up question if barriers involving the (B) availability of “health care professionals with subspecialist knowledge,” (C) “medical equipment or tests,” or (D) “people do not take the diagnostic tests,” were selected. MS = multiple sclerosis.
Figure 5
Figure 5. National Standards or Guidelines Relating to MS
Proportion of responses indicating (A) national standards related to MS diagnosis, (B) national standards focused on the speed of diagnosis of MS, or (C) the presence of national guidelines that cover diagnosis of MS. MS = multiple sclerosis.
See this image and copyright information in PMC

Comment in

References

    1. GBD 2016 Multiple Sclerosis Collaborators. Global, regional, and national burden of multiple sclerosis 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2019;18(3):269-285. doi:10.1016/S1474-4422(18)30443-5 - DOI - PMC - PubMed
    1. Wallin MT, Culpepper WJ, Campbell JD, et al. . The prevalence of MS in the United States: a population-based estimate using health claims data. Neurology. 2019;92(10):e1029-e1040. doi:10.1212/wnl.0000000000007035 - DOI - PMC - PubMed
    1. Walton C, King R, Rechtman L, et al. . Rising prevalence of multiple sclerosis worldwide: insights from the Atlas of MS, third edition. Mult Scler. 2020;26(14):1816-1821. doi:10.1177/1352458520970841 - DOI - PMC - PubMed
    1. Almasi-Hashiani A, Sahraian MA, Eskandarieh S. Evidence of an increased prevalence of multiple sclerosis: a population-based study of Tehran registry during 1999-2018. BMC Neurol. 2020;20(1):169. doi:10.1186/s12883-020-01747-8 - DOI - PMC - PubMed
    1. Forouhari A, Taheri G, Salari M, Moosazadeh M, Etemadifar M. Multiple sclerosis epidemiology in Asia and Oceania; A systematic review and meta-analysis. Mult Scler Relat Disord. 2021;54:103119. doi:10.1016/j.msard.2021.103119 - DOI - PubMed

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