Ricky Safer: What Clinicians Need to Know About PSC

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Safer discusses how symptoms and quality of life often go unaddressed in the few clinician-patient interactions about primary sclerosing cholangitis.

The physician-patient relationship at it pertains to managing a chronic disease is pivotal—both sides need to communicate and also be heard, at risk of worsening condition or missed opportunities to better the patient’s livelihood. When the condition at hand is also rare to the physician, the dynamic can become even more precarious.

In the second segment of an interview at The Liver Meeting 2023 from the American Association for the Study of Liver Diseases (AASLD) in Boston this month, Ricky Safer, primary sclerosing cholangitis (PSC) patient and chief executive officer and founder of the PSC Partners Seeking a Cure, shared her advice for clinicians looking to improve their communication with patients about PSC. One thing she has learned from fellow patient feedback over 2 decades is their need for less discussion around disease levels including LFTs, and more about their quality of life.

“We want to talk about our symptoms, but obviously don't have time,” Safer said. “We were thinking if we could somehow set up sort of a set of questions, very short, that physicians would be willing to ask the PSC patients when they come in—for example, 'Are you dealing with sleep problems, are you feeling really anxious? Are you feeling really depressed?' Symptoms like this that obviously feed into our quality of life and make it all a vicious cycle...some of the mental parts of it that most patients would never speak to the doctor about.”

Safer referenced her own experience in dealing with pruritus when she was first diagnosed—a common symptom of the disease, but an effect she said is “almost indescribable” for patients.

“You can't sleep—it just takes over your life,” Safer said. “And I think if doctors were more aware of some of the symptoms and how strongly they affect their lives...if somehow we could set something up so they could just quickly ask patients and know how our quality of life is affecting us.”

Lastly, Safer discussed the mission of PSC Partners Seeking a Cure—including millions of dollars in research grants, a massive patient network, an annual conference, and a name that which still defines the non-profit organization’s aspirations.

“Those are some of the things that are really leading us where we want to go to find that ultimate cure—which I will say we have had some of our providers say to me, 'I wish you would change your name because when you say finding a cure...that's way, way off,' and we're like, 'That's still our goal’,” Safer said.

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