AAN Expert Exchange: Patient-Reported Outcomes in Multiple Sclerosis


A trio of experts in multiple sclerosis exchanges their thoughts on the importance of patient-reported outcomes in the management of patients with the disease. [WATCH TIME: 3 minutes]

WATCH TIME: 3 minutes

Transcript below. Edited for clarity.

Ahmed Obiedat, MD, PhD: Now, regarding the quality of life, how do you incorporate this in your practice and patient reported outcomes?

Barry Hendin, MD: Well, it's funny, my chief patient-related outcome is to say to them, "I have a sheet they have to find that they have to sign or a piece of paper that they all fill out before they come to see me for any follow-up visit or any new visit and and it asks, "Are you better or worse? Is there anything new since I saw you last time? Are you having trouble in these various areas?" So, I come in with a kind of a GPS when they first walk into my office, I know whether they're thinking that bladder is an issue, whether they're thinking depression is an issue.

My PRO is the sheet they bring into me every time they see me, writing what they think are their issues. And so I want to be patient-driven, rather than then clinician-driven. They tell me, and then there is a note, "What should we talk about today?" So for me, I don't have a formalized quality of life [measure] that I [use] outside of clinical trials. In clinical trials, I have quality of life assessments. But in my real practice, I have a sheet that everyone fills out before they come to see me for every visit, [that's] one-page long, that asks about each of the systems that I worry about an MS. But, it includes mood and cognition, falls and gait, bladder, energy, etc, and then I then I tell them to guide me, "What should we talk about today?" That's my PRO.

Ahmed Obiedat, MD, PhD: Yeah, that's lovely. Actually, this is great because sometimes when we talk to them when they are in clinic, they may forget about some of the things that they came to talk about. We also sometimes overlook some of those [things]. So when you have at least one prior [thing] to write down, then, when they come into the office, then they may have some other things to talk about or go through what they wrote. And, then they're less likely to forget or miss some of the aspects that they really want to discuss with you during the visit.

Barry Hendin, MD: By the way, the happiest evolution and MS for me is how many of my patients in the current era write, "This is a routine follow-up. I have nothing to complain about."

Ahmed Obiedat, MD, PhD: That's like your NEDA, right? That's your no evidence of disease activity. That's beautiful.

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