Development of the Lee Symptom Scale-Skin Sclerosis for chronic GVHD-associated sclerosis

As Dr. Emily Baumrin noticed, patient voices have been absent in the measurement of skin sclerosis from chronic graft-versus-host disease (cGVHD) and how it severely impacts quality of life. To bring the patient perspective into clinical trials of new therapies and clinical care, Dr. Baumrin, along with other experts in the field, developed a new patient-reported outcome measure: The Lee Symptom Scale-Skin Sclerosis. This assessment tool is a 55-item questionnaire that measures five main areas of skin changes, symptoms, emotional and social functioning, mobility restrictions, and activity limitations. It centers the patient's voice and perspective in the core outcomes used to measure the impact of skin sclerosis in cGVHD and its response to treatment. Read more.