Partnering With Patients to Rapidly Develop a Quality-of-Life Measure in Mycosis Fungoides/Sézary Syndrome Type Cutaneous T-cell Lymphoma
The field of measurement in Mycosis Fungoides/Sézary syndrome type cutaneous T-cell lymphoma lacked a specific quality-of-life measure to describe patient experience or guide treatment decisions. Using an online platform with an engaged patient community, we developed and psychometrically validated a new measure in just under a year.
