For individuals with multiple sclerosis (MS), being informed by a doctor about their brain atrophy, an important predictive biomarker of MS disease progression, can evoke overwhelming fear and anxiety.
The University at Buffalo researchers, in collaboration with people with MS and their advocates, have analyzed the issue and devised solutions to improve patient understanding and potentially enhance self-care.
Titled “Communicating the Relevance of Neurodegeneration and Brain Atrophy to Multiple Sclerosis Patients: Perspectives from Patients, Providers, and Researchers,” the paper discusses how clinicians can effectively communicate highly sensitive and technical information about an individual’s progression of MS disease.
The research originated from a unique partnership between BNAC researchers and the centre’s Advisory Council. The council aims to offer a patient’s viewpoint to the centre’s globally recognized team of neuroimaging researchers. BNAC is an institute within the Department of Neurology at the Jacobs School. Zivadinov and his colleagues at BNAC have published some groundbreaking studies that have identified brain atrophy as a significant biomarker for the progression of MS disease.
Akin to a cancer diagnosis
“Our goal is to minimize misunderstanding and apprehension about brain atrophy, also known as brain volume loss, which can seem so devastating it can affect patients similarly to how a cancer diagnosis would,” said Penny Pennington, a lead author on the paper and co-chair of the Advisory Council’s Research and Education Committee. She has lived with MS for over 40 years.
In people with MS, small increments of neurodegeneration and resulting brain atrophy (brain volume loss), as measured by magnetic resonance imaging (MRI), are becoming increasingly better understood as important prognostic biomarkers that can predict patients’ progressive disability.
Based on their experience with patients’ reactions, some clinicians may prefer to avoid discussing atrophy altogether.
The authors found that general statements by clinicians, such as “what the research shows” for the larger population of people with MS, are often not helpful. They emphasized the need to be technically specific.
The paper presents a model for how the medical community can assess and integrate the views of patients, medical providers, and researchers to arrive at guidelines to help ensure that patients are given vital information about their disease progression.
While the paper focuses on multiple sclerosis, it could set a precedent for individuals with other medical conditions to address similar communication challenges.
Convincing patients
“Hard-to-hear or hard-to-communicate information can be crucial in convincing patients to make beneficial changes. However, an excessive or insufficient amount of information, or a rushed explanation, can have the opposite effect on patient care,” stated Pennington.
She added that this reality, coupled with the dramatic increase in the availability of online medical information, can contribute to an unavoidable dilemma for providers and widely disparate views about the best way to communicate with patients.
“By listening to the perspectives and achieving important consensus among the three critical types of players—patients, clinicians, and researchers,” said Pennington, “we arrived at 13 tangible recommendations for clinicians. There is a meaningful opportunity now for the MS community to come together to produce the necessary informative materials and standardize patient interaction practices.”
Three subcommittees, consisting of researchers, providers, and patients, were formed over two years. They hosted workshops and surveys to gather data on current specialty provider practices for discussing MRI findings and patient perceptions regarding MRI findings. Thirteen MS specialists from six academic and non-academic MS centers in the U.S. participated in the survey, along with 26 randomly selected patients from UB’s Jacobs MS Center for Treatment and Research.
Recommendations range from providing basic information on brain anatomy and neurodegeneration to cautions about the state of science and MRI technology. The paper includes a patient discussion guide as a resource for providers. The authors said explaining how an individual patient’s atrophy measurements compare with those associated with normal aging is especially important.
It is recommended that providers discuss with patients how inflammation and neurodegeneration in the brain are measured and how they contribute to brain atrophy in MS.
Healthcare providers should emphasize that MS is diagnosed based on clinical symptoms, not just radiological findings. Treatment decisions should not rely solely on MRI results. It’s crucial to communicate to people with MS the advantages of both physical and mental exercise in helping to build brain reserve. This, in turn, can slow or even reverse the neurodegeneration that leads to brain atrophy.
The authors found that the more a patient understands the role of brain atrophy and other MRI metrics, the more accepting they may be of the value of MS therapies.
“It is extremely helpful to researchers to see how they can contribute to resolving the dilemma that now confounds so many clinicians and that results in so much unnecessary anxiety and confusion experienced by countless patients,” said Zivadinov.