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

Penny Pennington, Bianca Weinstock-Guttman, Channa Kolb, Dejan Jakimovski, Katherine Sacca, Ralph H.B. Benedict, Svetlana Eckert, Marc Stecker, Alexis Lizarraga, Michael G. Dwyer, Carol B. Schumacher, Niels Bergsland, Patricia Picco, Evanthia Bernitsas, Rana Zabad, Gabriel Pardo, Donald Negroski, Martin Belkin, David Hojnacki, Robert Zivadinov

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
JournalJournal of Neurology
DOIs
StateAccepted/In press - 2022

Keywords

  • Brain atrophy
  • Multiple sclerosis
  • Patient perspective
  • Provider perspective
  • Recommendations
  • Researcher perspective

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology

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