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Communicating the relevance of neurodegeneration and brain atrophy to multiple sclerosis patients: patient, provider and researcher perspectives

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A Correction to this article was published on 27 December 2022

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Abstract

Central nervous system (CNS) atrophy provides valuable additional evidence of an ongoing neurodegeneration independent of lesion accrual in persons with multiple sclerosis (PwMS). However, there are limitations for interpretation of CNS volume changes at individual patient-level. Patients are receiving information on the topic of atrophy through various sources, including media, patient support groups and conferences, and discussions with their providers. Whether or not the topic of CNS atrophy should be proactively discussed with PwMS during office appointments is currently controversial. This commentary/perspective article represents perspectives of PwMS, providers and researchers with recommendations for minimizing confusion and anxiety, and facilitating proactive discussion about brain atrophy, as an upcoming routine measure in evaluating disease progression and treatment response monitoring. The following recommendations were created based on application of patient’s and provider’s surveys, and various workshops held over a period of 2 years: (1) PwMS should receive basic information on understanding of brain functional anatomy, and explanation of inflammation and neurodegeneration; (2) the expertise for atrophy measurements should be characterized as evolving; (3) quality patient education materials on these topics should be provided; (4) the need for standardization of MRI exams has to be explained and communicated; (5) providers should discuss background on volumetric changes, including references to normal aging; (6) the limitations of brain volume assessments at an individual-level should be explained; (7) the timing and language used to convey this information should be individualized based on the patient’s background and disease status; (8) a discussion guide may be a very helpful resource for use by providers/staff to support these discussions; (9) understanding the role of brain atrophy and other MRI metrics may elicit greater patient satisfaction and acceptance of the value of therapies that have proven efficacy around these outcomes; (10) the areas that represent possibilities for positive self-management of MS symptoms that foster hope for improvement should be emphasized, and in particular regarding use of physical and mental exercise that build or maintain brain reserve through increased network efficiency, and (11) an additional time during clinical visits should be allotted to discuss these topics, including creation of specific educational programs.

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Acknowledgements

We would like to acknowledge contribution of Tracie Jacquemin and Linda Safran to this study.

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There is nothing to disclose.

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Authors and Affiliations

  1. Advisory Council, Buffalo Neuroimaging Analysis Center, Buffalo, NY, USA

    Penny Pennington, Katherine Sacca, Marc Stecker, Carol B. Schumacher & Patricia Picco

  2. Department of Neurology, Jacobs Comprehensive MS Treatment and Research Center, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, Buffalo, NY, USA

    Bianca Weinstock-Guttman, Channa Kolb, Ralph H. B. Benedict, Svetlana Eckert, Alexis Lizarraga & David Hojnacki

  3. Department of Neurology, Buffalo Neuroimaging Analysis Center, Jacobs School of Medicine and Biomedical Sciences, University at Buffalo, State University of New York, 100 High Street, Buffalo, NY, 14203, USA

    Dejan Jakimovski, Michael G. Dwyer, Niels Bergsland & Robert Zivadinov

  4. Center for Biomedical Imaging at Clinical Translational Science Institute, University at Buffalo, State University of New York, Buffalo, NY, USA

    Michael G. Dwyer & Robert Zivadinov

  5. IRCCS, Fondazione Don Carlo Gnocchi ONLUS, Milan, Italy

    Niels Bergsland

  6. Department of Neurology, Wayne State University, Detroit, MI, USA

    Evanthia Bernitsas

  7. University of Nebraska Medical Center, Omaha, NE, USA

    Rana Zabad

  8. Oklahoma Medical Research Foundation, Oklahoma City, OK, USA

    Gabriel Pardo

  9. Negroski Neurology, LLP, Sarasota, Sarasota, FL, USA

    Donald Negroski

  10. Michigan Institute for Neurological Disorders (MIND), Farmington Hills, MI, USA

    Martin Belkin

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  1. Penny Pennington
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Correspondence to Robert Zivadinov.

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Conflicts of interest

Penny Pennington received consulting fee from EMD Serono. Dejan Jakimovski, Katherine Sacca, Marc Stecker, Carol B. Schumacher, Niels Bergsland, Alexis Lizarraga and Patricia Picco have nothing to disclose. Bianca Weinstock-Guttman received honoraria as a speaker and/or as a consultant for Biogen Idec, Sanofi &Genzyme, Genentech, Novartis, BMS, Bayer, Horizon and Janssen. Dr Weinstock-Guttman received research funds from Biogen Idec, Genentech and Novartis. Ralph HB. Benedict has received consultation or speaking fees from Bristol Myer Squibb, Biogen, Merck, EMD Serono, Roche, Verasci, Immune Therapeutics, Novartis, and Sanofi-Genzyme Channa Kolb has received speaker honoraria and consultant fees from EMD Serono, Teva Pharmaceuticals, Acorda, Novartis, Genzyme, Alexion, Genentech, Mallinckrodt and Biogen-Idec. Ralph HB Benedict received research support from Biogen, Bristol Meyers Squibb, Genzyme, Genentech, Novartis, National Institutes of Health, National Multiple Sclerosis Society, Verasci. He conslts for Immunic Therapeutics, Latin American Committee for Treatment and Research in Multiple Sclerosis, Merck, Novartis, Roche, Sanofi. He is on speaker bureau for Biogen, Bristol Meyers Squibb, EMD Serono. He received royalties from Psychological Assessment Resources. Svetlana Eckert Michael G. Dwyer has received personal compensation from Keystone Heart for consultant fees. He received financial support for research activities from Bristol Myers Squibb, Mapi Pharma, Keystone Heart, Protembis and V-WAVE Medical. Evanthia Bernitsas received research grants from Roche/Genentech, BMS, Sanofi/Genzyme, EMD Serono, Alexion, Novartis, TG Therapeutics, PCORI, Prime Education. She received consulting fee/honoraria: Biogen, Janssen and Janssen, Horizon Pharmaceuticals, Roche/Genentech, Greenwich Biosciences. Rana Zabad is a speaker for BMS and Genentech and a principal investigator on studies sponsored by Adamas Pharmaceuticals, Genentech, GW Pharma, Merck, Sanofi, and the TREAT-MS PCORI trial. She has served as a consultant or advisor to Bayer, Biogen Idec, Bristol Myers Squibb, Genentech, GW PHarma, Janssen Pharmaceuticals, Sanofi, and TG Therapeutics and was a member of the adjudication committee on the safety and efficacy of biotin in progressive MS by MedDay Pharmaceuticals. Gabriel Pardo has served on advisory boards and/or speakers’ bureau for Biogen Idec, Celgene/Bristol Myers Squibb, EMD Serono, Greenwich Biosciences, Janssen Pharmaceuticals, Novartis Pharmaceuticals, Roche/Genentech, Sanofi-Genzyme, TG Therapeutics and Viela Bio/Horizon Therapeutics; and is a member of the Scientific Advisory Board of Progentec Diagnostics Inc. Donald Negroski received fees as a speaker/consultant for: Alexion, Biogen, Bristol Myers Squibb, EMD -Serono, Gennetech, Janson, Novartis, Sanofi-Genzyme, TG Therapeutics. Martin Belkin has received honoraria for speaking and consulting from Biogen, Genentech, TG therapeutics, Alexion, Sanofi, EMD Serono and Bristol Myers Squibb. He has received research funds from Biogen, Sanofi, Genentech, EMD Serono and Abbvie. David Hojnacki received speaking and consulting fees from BMS, Biogen and Novartis. Robert Zivadinov has received personal compensation from Bristol Myers Squibb, EMD Serono, Sanofi, Keystone Heart, Protembis and Novartis for speaking and consultant fees. He received financial support for research activities from Sanofi, Novartis, Bristol Myers Squibb, Octave, Mapi Pharma, Keystone Heart, Protembis and V-WAVE Medical.

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Pennington, P., Weinstock-Guttman, B., Kolb, C. et al. Communicating the relevance of neurodegeneration and brain atrophy to multiple sclerosis patients: patient, provider and researcher perspectives. J Neurol 270, 1095–1119 (2023). https://doi.org/10.1007/s00415-022-11405-3

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