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Dr. Donna Evon: Centering the Patient Experience in PSC

Dr. Donna Evon: Centering the Patient Experience in PSC

Shining the Spotlight on Donna Evon, PhD

Professor of Medicine
Division of Gastroenterology and Hepatology
UNC School of Medicine at Chapel Hill

  • Dr. Donna Evon is a clinical health psychologist and behavioral researcher with over 20 years of clinical and research experience in chronic liver diseases.
  • She is a Professor of Medicine in the UNC Division of Gastroenterology and Hepatology and the UNC Liver Program at the University of North Carolina, Chapel Hill.
  • Her research centers on psychosocial and behavioral factors that shape the health and well-being of individuals with chronic liver disease, along with the development and evaluation of interventions to enhance symptoms, quality of life, and overall outcomes.
  • Dr. Evon uses patient-reported outcome measures and qualitative methods as part of her research with patients with viral hepatitis, PSC, and cirrhosis.  
  • She works closely with patient partners and organizations like PSC Partners to ensure the patient's voice is central to research aims, outcomes and measures.

Q & A with Dr. Donna Evon

Why is it so important for patients to use these specific PSC tools instead of the generic surveys often used in the past?

The three symptom measures we designed are grounded in PSC patients’ lived experiences, not in the general population or other liver diseases. They were developed through in-depth interviews with adults with PSC, and patients confirmed the measures are clear, understandable, and accurately capture their experiences.

How can patients use these new symptom surveys to make sure they are "heard and seen" by doctors during short clinic visits? 

Though developed for clinical trials, patients can complete and share these surveys with their providers as communication tools. They can upload them to their electronic medical record or bring them to appointments. Reviewing responses on symptom frequency, severity, and impact helps providers discuss medical or lifestyle interventions with their patients.

How will the data collected through the SAP and other PRO tools shape future PSC clinical trials and, ultimately, help move new treatments toward approval?

Adding symptom-based measures to clinical trials will allow researchers to evaluate the multiple benefits of new treatments on the disease as well as how patients are feeling. Treatments may be approved for PSC based on meaningful improvement in symptoms, not just disease markers.  


“If a new medication improves your lab values or markers of disease, that’s fantastic, but what if the medication also reduced your fatigue, brain fog, and discomfort around your liver? We cannot ‘discover’ these added benefits if we don’t use the right tools to capture potential changes.” – Dr. Donna Evon

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