Neuroimaging researchers, providers and people with MS collaborated to develop new guidelines on how to communicate about brain atrophy
BUFFALO, NY — For people with multiple sclerosis (MS), hearing a doctor tell them they have brain atrophy — an important predictive biomarker of MS progression — can trigger debilitating fear and anxiety.
Now, a team of researchers from the University at Buffalo working alongside people with MS and their advocates have analyzed the problem and developed solutions that can open the door to better patient understanding and potentially better personal care. The article was published online in The Journal of Neurology on November 14.
Titled “Communicating the Relevance of Neurodegeneration and Brain Atrophy to Multiple Sclerosis Patients: Patient, Provider and Researcher Perspectives,” the article describes how clinicians can better communicate highly sensitive and technical information about an individual’s disease progression.
“Every group involved in this publication — researchers, providers, and especially patients — has brought valuable perspective to the goal of better communication about this complex disease,” said Robert ZivadinovMD, PhD, Corresponding Author, UB Director Buffalo Neuroimaging Analysis Center (BNAC) and Professor of Neurology at the Jacobs School of Medicine and Biomedical Sciences at UB. He also directs the Biomedical Imaging Center in the UB Institute of Clinical and Translational Sciences.
The research was born out of a new collaboration between BNAC researchers and Advisory Board, whose mission is to provide a patient’s perspective to the centre’s team of internationally renowned neuroimaging researchers. The BNAC is an institute within the Department of Neurology at Jacobs School. Zivadinov and his colleagues at BNAC have published some of the landmark studies identifying brain atrophy as a key biomarker of MS progression.
Similar to a cancer diagnosis
“Our goal is to minimize misunderstandings and apprehensions about brain atrophy, also known as brain volume loss, which can seem so devastating that it can affect patients like a diagnosis of cancer would.” said Penny Pennington, lead author of the article and co. -Chair of the Research and Education Committee of the Advisory Board. She has lived with MS for over 40 years.
In people with MS, small increments of neurodegeneration and cerebral atrophy (loss of brain volume), as measured by magnetic resonance imaging (MRI), are increasingly understood as important prognostic biomarkers that may predict the progressive disability of patients.
The authors found that general statements from clinicians, such as “what the research shows” for the general population of people with MS, are often not helpful and need to be technically specific.
The article presents a model for how the medical community can assess and integrate the perspectives of patients, medical providers and researchers to arrive at guidelines to ensure that patients receive vital information about the progression of their disease.
Although the document deals only with MS, it could pave the way for patient advisors with other diseases to tackle similarly difficult communication issues.
“Sometimes hard-to-hear or hard-to-communicate information can be critical in convincing patients to pursue or adhere to behavioral changes or treatment protocols that can significantly improve their quality of life,” Pennington said. “Yet too much or too little information, or a confusing and rushed explanation in a doctor’s office can have the opposite effect of the intended effect on patient care.”
She added that this reality, coupled with the dramatic increase in the availability of medical information online, can contribute to an inevitable dilemma for providers and widely differing opinions about how best to communicate with patients.
“Listening to the perspectives and achieving significant consensus among all three types of critical stakeholders – patients, clinicians and researchers,” said Pennington, “we were able to come up with 13 tangible recommendations for clinicians. There is now a significant opportunity for the MS community to come together to produce the necessary educational materials and standardize patient interaction practices.
In two years, three sub-committees composed of researchers, service providers and patients were organized. They then conducted workshops and surveys to gather relevant data on the current practices of specialty providers to discuss MRI outcomes as well as patient perceptions of MRI outcomes. Thirteen MS specialists practicing at six academic and non-academic MS centers in the United States participated in the survey along with 26 randomly selected patients seen at UB Jacobs MS Center for Treatment and Research.
Recommendations range from the need to provide basic information about brain anatomy and neurodegeneration to caveats regarding the state of MRI science and technology. The document includes a patient discussion guide as a resource for providers. Explaining how an individual patient’s atrophy measures compare to those associated with normal aging is particularly important, the authors say.
It is recommended that providers discuss with patients how brain inflammation and neurodegeneration are measured and how they contribute to brain atrophy in MS.
Providers are urged to emphasize that MS is diagnosed clinically, not radiologically, and that treatment decisions should not be based rigidly on MRI results alone. Communicating to people with MS the benefits of physical and mental exercise to help build brain reserve that can slow or reverse the neurodegeneration that leads to brain atrophy is also essential.
The authors found that the more a patient understands the role of brain atrophy and other MRI parameters, the more they can accept the value of MS treatments.
“It is extremely helpful for researchers to see how they can help resolve the dilemma that now confounds so many clinicians and results in so much unnecessary anxiety and confusion experienced by countless patients,” Zivadinov said.
In addition to Pennington, other authors on the Advisory Board, including people with MS, are Katherine Sacca, Marc Stecker, Carol B. Schumacher, and Patricia Picco.
Co-authors from the Jacobs School or the Buffalo Neuroimaging Analysis Center include Bianca Weinstock-Guttman, MD, SUNY Distinguished Professor; Channa Kolb, MD, assistant professor; Dejan Jakimovski, MD, PhD, assistant research professor; Ralph H. Benedict, PhD, professor, Svetlana Eckert, MD, clinical assistant professor, Michael G. Dwyer, PhD, associate professor; Niels Bergsland, PhD, and David Hojnacki, MD.
Other co-authors are from IRCCS, Fondazione Don Carlo Gnocchi ONLUS in Milan; Wayne State University; the University of Nebraska Medical Center; Oklahoma Medical Research Foundation, Negroski Neurology and Michigan Institute for Neurological Disorders.