Centering the Patient Voice: The Lee Symptom Scale for Chronic GVHD
📖 Episode Description:
In this episode, we explore the Lee Symptom Scale, a pioneering tool that brings the patient voice to the forefront in chronic graft-versus-host disease (cGVHD) care and research. Developed by Dr. Stephanie J. Lee and her team, this validated patient-reported outcome measure helps capture the real-world symptom burden of cGVHD—giving both patients and clinicians a powerful way to track symptoms and assess whether treatments are truly improving quality of life.
You’ll learn:
Why this tool was created: Before its development, doctors lacked a standardized way to measure how cGVHD symptoms affected daily life directly from the patient’s perspective.
How the scale works:
Originally a 30-question tool covering 7 key areas—skin, eyes, mouth, lungs, nutrition, energy, and psychological well-being.
Patients rate how much each symptom has bothered them using a simple 5-point scale.
Takes just 2–5 minutes to complete, making it ideal for regular use.
Why the NIH endorsed it for clinical trials and how it’s used to monitor treatment effectiveness and track symptom trends over time.
How the tool empowers patients and caregivers to play an active role in care decisions by clearly communicating symptom severity and changes.
Where the tool is evolving:
Shortened recall periods (7-day versions) to better capture symptom fluctuations.
Ongoing refinements to improve clarity of questions and ensure it captures what truly impacts quality of life.
Growing focus on integrating it into research and clinical practice to inform better treatments.