How we’re efficiently educating patients and care partners about treatment goals, logistics, risks and benefits
Cleveland Clinic Nevada began offering lecanemab amyloid beta–directed antibody infusions in 2023, several months after the FDA granted full approval for the new treatment to slow progression of Alzheimer’s disease. Patients considering the anti-amyloid therapy have one-on-one conversations with their primary neurology providers at Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, but as the volume of infusions increased, providers wanted another way to educate patients.
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“We began receiving more MyChart® [online portal] messages from patients in the interim between their appointment and consent to when they started the infusions,” says Maileen Ulep, PhD, MSN, APRN, FNP-BC, who runs the center’s twice-weekly anti-amyloid clinic for patients during their 18-month treatment cycle. “We thought that a shared medical appointment would be a great venue for patients to ask similar questions.”
The Lou Ruvo Center for Brain Health launched “Navigating Anti-Amyloid Therapy,” a monthly online shared medical appointment (SMA) in early 2024 for patient/family caregiver pairs to discuss goals, logistics, risks and benefits of the treatment.
“To my knowledge, this is the first SMA specifically designed for patients and caregivers considering anti-amyloid treatment,” says Lakeshia Gibson, MD, a psychiatrist specializing in memory disorders and dementia who runs the SMA (shown in photo at top). “Clinicians often want to spend more time answering questions in detail, but full clinic schedules make this challenging. Without SMAs, patients might require multiple outpatient visits, delaying their care. SMAs help bridge this gap by offering comprehensive education to a number of patients in a single session.”
During the 90-minute virtual SMAs, Dr. Gibson shares a PowerPoint presentation, pausing between sections to encourage participant interaction and to address questions.
“Information is presented in manageable segments to support working memory and long-term retention,” Dr. Gibson explains.
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The segments include information on:
After the SMA, care coordinator Stacy James, RN, sends participants an after-visit summary and outlines the next steps for treatment readiness. Patients are advised to follow up with their primary neurology provider with additional questions or case-specific clarifications.
“Typically, patient attendees have already met inclusion criteria or are awaiting APOE genotyping for risk stratification,” Dr. Gibson notes. “Those considered candidates for Alzheimer’s infusions often have a chance to hear the core information multiple times during the decision-making process.”
Demand for the SMA has grown, with up to 15 patient/care partner pairs in each session. Participation is strongly encouraged before therapy is started, but it isn’t mandatory. To accommodate more participants, the Lou Ruvo Center for Brain Health now offers the SMA every two weeks.
Feedback from patients and their care partners who have participated in the SMA has been overwhelmingly positive, says Dr. Gibson.
“Patients who return for follow-up before deciding on anti-amyloid therapy often share that the sessions clarified complex information and helped them interpret what they had read online,” she says.
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The SMAs also provide participants with a sense of community during a challenging time. “Patients tell me that interacting with other people who are navigating the same diagnosis and decisions is a benefit,” says Dr. Ulep. “They hear questions they might not have thought about and see other patients who are on the same journey.”
Some patients choose to forgo anti-amyloid therapy following the SMA, particularly after learning about clinical trial data.
“We support informed decision-making and patient autonomy,” Dr. Gibson says. “Regardless of whether they proceed with newer Alzheimer's therapies, such as lecanemab or donanemab, these sessions ensure that patients and caregivers understand their options for managing this progressive neurodegenerative disease.”
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