Indu Subramanian, MD: Breaking an Unwelcome Diagnosis With Hope and Compassion

"Kathrin LaFaver, MD: Hello. I'm Kathrin LaFaver. I'm a movement disorder specialist in Saratoga Springs, New York. I have the pleasure of talking today with Dr Indu Subramanian, a clinical professor at UCLA in California and the first author of a paper just published in Parkinsonism & Related Disorders, entitled "Delivering the Diagnosis of Parkinson's Disease – Setting the Stage With Hope and Compassion."

I love the title. To start it off, do you want to tell us about what gave you the motivation to look into this topic?

Listening to Patient Voices

Indu Subramanian, MD

Indu Subramanian, MD: During the pandemic, I was hosting a virtual support group with a number of voices throughout the world who are thought leaders in the care of Parkinson's patients. Some of the discussions included a number of patient voices, and I became involved in some of the advocacy community, learning about what has served patients well in terms of what we do and what they found somewhat harmful in terms of what we've done as a treatment team sometimes.

I was actually quite surprised at how impactful some of the conversations were around how people got the diagnosis. For example, Kuhan, who is one of the authors, is a patient who lives in the UK. He's a young Sri Lankan man.

He was talking about the day that he got the diagnosis with such clarity, such pristine memories of the sky, the light, the paint in the office. This is a moment in time that is frozen. Now, 10 years later, he looks back on that as a really pivotal moment for him and recalls it sometimes with negative energy and thinks it could have been done better.

Soania Mathur, who's an amazing patient voice as well, is actually a family doctor who has practiced in Canada and talked about how we can do better. We ended up pairing with some of these patient voices and also some world leaders in this space.

Bart Post is a neurologist who is very interested in early-onset or young-onset Parkinson's disease and runs a center in the Netherlands. Anette Schrag, who is the senior author, devoted a number of years of her career to learn how patients could perhaps create plans for self-management. She's had a number of interviews and focus groups with patients, and much of the data in our paper are from her.

Did they feel like the disease diagnosis was given with compassion? Did they feel like they got these types of information? What do they walk out of the office understanding? What are the lifestyle choices they can make?

It was a really nice collaboration. We also had included a psychologist in the paper who could fill in some of the psychology of getting bad news."

Read the full transcript at Medscape.