Reducing the Impact GPP has on Quality of Life

Maria Lopes, MD, MS, and Mark G. Lebwohl, MD, discuss how the impact that generalized pustular psoriasis (GPP) has on quality of life can be reduced and how the effects are measured in practice.

Ryan Haumschild, PharmD, MS, MBA: If I could turn to you Dr Lopes, and ask about the impact of generalized pustular psoriasis [GPP] on quality of life. How do we keep improving them and how do we keep monitoring them, especially in debilitating diseases like GPP?

Maria Lopes, MD, MS: I think it’s important to correlate quality of life to function. It’s important for a payer to quantify the resource use and the total costs associated with a condition, the avoidable spending in terms of the ED [emergency department] and hospitalizations, and ICU [intensive care unit], and organ damage, etc. Then I completely agree with Dr Lebwohl. Often the quality of life is secondary because why wouldn’t it be if we were keeping patients healthier and out of the hospital? It’s part of the story. I think for every patient, obviously, quality of life is paramount. But I think for a life-threatening condition if we can reverse the severity, if we could see a response the next day for a life-threatening condition, I think that is the story. I also agree with Dr Farberg. There’s so much education that needs to happen around this disease in terms of awareness, but also to appreciate what it is vs what it isn’t because it is a rare disease. As a payer, we’re always concerned, especially if we now have a new treatment, that we’re educating, and that hopefully patients then are not misdiagnosed with this very rare condition, when in fact, they may have something else for which a different treatment may be a better option. An important end point is understanding the nature of the disease, how you make the diagnosis, and clarity on what it is vs what it is not, so that we’re all comfortable in terms of addressing the unmet need with a life-saving drug.

Ryan Haumschild, PharmD, MS, MBA: The headline is very clear, life-threatening disease, and not losing sight of that at all. Dr Lebwohl, how are the effects of GPP on the quality of life measured in your practice? Is that something you monitor as part of the story of that patient’s journey through treatment?

Mark G. Lebwohl, MD: In clinical trials, we do DLQIs [Dermatology Life Quality Index questionnaires]. I don’t even remember what they were in the GPP because, to me, a patient not being able to do anything has to have a quality of life score that’s above 30, above the scale. It’s obviously a devastating disease. We don’t do DLQIs in clinical practice; we do them in clinical trials. This is a disease where if you see it, you’re going to know it. The patients are really on death’s door.

Transcript edited for clarity.

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