Getting to Diagnosis in Weeks, Not Years

When memory concerns arise, primary care doctors are usually the first to hear about it. But until recently, there wasn’t much they could do to expedite an Alzheimer’s diagnosis.

At the University of Kansas (KU) Medical Center, that’s changing. Dr. Jeff Burns — the neurologist who leads KU’s Alzheimer’s Disease Research Center, and chairs the Alzheimer’s Policy Working Group — teamed up with family medicine physician Dr. Jennifer Woodward and others to build a brain health pathway that improves Alzheimer’s detection in primary care. We spoke with two family physicians trained in this pathway, about its impact.

Kalee Kirmer-Voss, MD, is an Assistant Professor of Family Medicine at the KU. She sees patients from birth to end of life, with a focus on patients with intellectual and developmental disabilities including people with Down syndrome, who face a much higher risk of Alzheimer’s.

Kate Rampon, MD, is an Associate Professor in the Department of Family Medicine and Community Health at KU, where her role is half clinical and half educational. Her practice is mostly moms and young families, but spans patients up to 104 years old.

The following conversation has been edited for length and clarity.

Dr. Kate Rampon: We see a lot of people who have memory concerns and come to primary care as the first touch point. Sometimes families have concerns and contact us, especially when we see multiple generations, or a husband and wife pair. Other times we form our own concerns, if we’re having the same conversation over and over again, or medications are getting forgotten. Those observations are part of the longitudinal relationships we have with patients.

Dr. Kirmer-Voss: For Medicare Annual Wellness Visits (AWVs), part of the Medicare requirement is cognitive assessment screening. Before the brain health pathway, when results came back abnormal, we would know something was wrong but it would take months for the specialist to get involved, because that’s how long appointment scheduling took.

Dr. Kate Rampon: Before the new pathway, we knew the very basic workup and had a limited resource of neuropsychology testing that took months to a year. When I was waiting on neuropsych testing and neurology, it was hard to know what was going on between visits. As doctors, we really like to solve problems. There’s some moral dissonance when I know there’s a problem and can’t yet solve it. I felt powerless relying on specialty pathways that took a long time. And sometimes patients would forget about referrals, or say “Oh, I’m just getting older, this is just aging” and not go to the appointment. That’s where we felt the gap.

Dr. Kirmer-Voss: Now we’re empowered to know what labs to order, get the patient in for a cognitive visit, and get them the right workup and a diagnosis made quickly – typically within the next month. In my experience, my quickest turnaround from an abnormal AWV screen to an actual diagnosis of Alzheimer’s has taken just a few weeks.

The collaboration around e-consults with our neurology colleagues is wonderful because they will send back these messages saying, “I think it’s X, Y, and Z for these reasons”. It really allows us to learn. There is so much to know about brain health that we cannot know everything, but we are an important touchpoint for patients and can expedite their care with neurology. The more we do this, the more we are learning about brain health.

Dr. Rampon: When we see indeterminate results, we can use the rapport and trust we’ve built with our patients over time, to interpret these situations and welcome the neurologist to the party as a trusted colleague. It’s meaningful when primary care imbues our relationship into the specialist referral, instead of just sending a referral off into the computer.

Dr. Kirmer-Voss: There are a lot of conditions that mimic Alzheimer’s. It’s important that we can get a cognitive assessment done quickly, and if it’s not Alzheimer’s, we can determine what else is going on, whether it’s sleep apnea, depression, or something else we can address in primary care. That’s beneficial, and empowers us to better help our patients.

Dr. Rampon: The way Dr. Jeff Burns and Dr. Jennifer Woodward communicated it was: “We have this brain research center, and we need help on specific things to get more patients in the door. We want to bring primary care into partnership with neurology, and make neurology available for collaboration.” And they trained us on how to do that.

Dr. Kirmer-Voss: Dr. Woodward was a champion in our family medicine department. She approached our faculty and enlisted people to be part of this new care pathway to expand access around brain health and Alzheimer’s diagnoses.

Dr. Rampon: Dr. Woodward does a lot of our medical informatics as well, and helped design the order sets and care pathways. We see a lot of different medical conditions in primary care. It’s not all on me to remember every step in the care pathway every time.

Dr. Kirmer-Voss: This has helped us give patients the care they need faster and open up the doors to early treatment for Alzheimer’s, especially when they’re in the early stages of disease and can benefit from newer treatments that are coming out.

I had one patient whose family expressed concerns about their memory, and they came in for a cognitive assessment. We did all the testing and ended up giving this patient an Alzheimer’s diagnosis. From the time of concern to the time of the patient seeing neurology was about three to four months, which is unheard of. That timeliness was really beneficial for this patient, allowing them to hopefully get treatment to slow down the disease, rather than the disease progressing while they wait to be evaluated.

Dr. Kirmer-Voss: Another patient ended up having pretty late stage disease, so won’t qualify for treatment. They were very adamant that they did not have Alzheimer’s, despite a strong family history. Having objective measures helped relay the importance of a correct diagnosis. Once the diagnosis was clear, we could help the family and patient navigate things like medication, driving restrictions, and safely leaving the house. It opened up conversations that simply weren’t possible before.

Dr. Rampon: It’s an interesting time in medicine. We have expanding research that’s hard to even keep up with, and on top of that, patients have unprecedented access to information and are doing their own research, which I can appreciate. It creates an interesting milieu, and some gray spaces that make a diagnosis even more valuable.

Dr. Rampon: Getting testing done in a timely way with a familiar face is a patient satisfier. Patients and families benefit from a diagnosis, and from our ability as primary care doctors to broaden the conversation to exercise, mood, sleep, advance care planning, financial planning. We can talk about overall brain health and preserving brain health.

Dr. Kirmer-Voss: Treatment can slow progression in the early stages of disease. The sooner we can start the medication, the more cognition we can preserve. Just knowing that and being able to start things early for patients helps us not feel so helpless as providers, because we can offer them something while they’re waiting to get in with the neurologist. We’re in the infancy of this new brain health pathway, but long-term I think we’ll see a lot of benefit.

Dr. Rampon: Alzheimer’s is a really hard diagnosis. There’s a lot of grief that comes with it, and the stages of grief can go in cycles. Patients have to come to terms with it and decide what they want to do about treatment and how to tell their family. When you’ve got the primary care doctor on the team, it makes a difference.