MS Patients Help Steer Guidelines for Talks About Brain Volume Loss

Aim is minimizing 'misunderstanding and apprehension' in discussions with doctors

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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A team of doctors, researchers, and patients has come up with a set of recommendations to help medical professionals in navigating difficult discussions with patients about brain atrophy — or shrinkage — with multiple sclerosis (MS).

“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 akin to how a cancer diagnosis would,” Penny Pennington, a lead author and member of the Buffalo Neuroimaging Analysis Center’s advisory council, said in a University of Buffalo press release.

“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,” added Robert Zivadinov, MD, PhD, a professor of neurology at the university and study co-author.

The paper, “Communicating the relevance of neurodegeneration and brain atrophy to multiple sclerosis patients: patient, provider and researcher perspectives,” was published in the Journal of Neurology.

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Brain atrophy refers to a loss in the total volume or size of the brain. An emerging field of research indicates that faster rates of brain atrophy are associated with disability progression in the absence of relapses.

As brain atrophy can be an important clinical measure, it is often necessary for healthcare providers to discuss it with their patients. These discussions are often emotionally charged, and can trigger considerable anxiety and fear in patients, especially if information is not communicated clearly.

“Sometimes hard-to-hear or hard-to-communicate information can be essential in convincing patients to pursue or adhere to behavior changes or treatment protocols that can materially improve their quality of life. Yet too much or too little information, or a muddled, hurried explanation … can have the opposite of its intended effect,” said Pennington, who has lived with MS for over 40 years.

To create the new guidelines, a group of subcommittees held a series of meetings and workshops over the course of two years. Participants included 13 MS specialists and 26 people living with MS, who discussed their experiences and reviewed data to come up with about a dozen general recommendations.

“Each group involved in this publication — researchers, providers and especially patients — has contributed a valuable perspective to the goal of better communication about this complex disease,” Zivadinov said.

Several of the recommendations emphasize the importance of making clear what is known about brain atrophy in MS, as well as what is unknown. Patients also should be provided with high-quality educational materials with background information about brain atrophy, including the fact that some amount of brain shrinkage is normal with aging.

Likewise, it should be made clear that the understanding of brain atrophy is still evolving, and that while atrophy is generally linked with progression in large groups, it’s much harder to make firm connections on a patient-by-patient basis.

The guidelines stress that timing and language used to talk about brain atrophy needs to be tailored, based on the patient’s background and disease status, and they suggest providing clinical staff with a discussion guide to help navigate these conversations.

Guidelines also emphasize the importance of empowering patients with steps they can take to minimize brain atrophy, including optimizing MS treatment as well as getting regular physical and mental exercise to help build brain reserves.

“This commentary/perspective article represents perspectives of [people with] MS, 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 researchers concluded.

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