Scholarly Spotlight: New Tool Measures Quality of Life in Individuals with Skin Lymphoma

A recent academic study led by Caroline Raymundo, MS, Dermatology Research Fellow and third-year medical student at the UW School of Medicine, examined a new assessment tool designed specifically for individuals with cutaneous T-cell lymphomas such as mycosis fungoides (MF) and Sézary syndrome (SS).

Known as the FACT-CTCL questionnaire, this tool provides a more personalized and effective approach to evaluating the impact of these conditions on patients quality of life.  

The study titled, “Development and psychometric properties of the Functional Assessment of Cancer Therapy-Cutaneous T-Cell Lymphoma (FACT-CTCL) instrument,” was published to the British Journal of Dermatology on Dec. 23, 2024.  

Please join us in congratulating Caroline and collaborators on this significant achievement! 

Co-Authors: 

• Caroline Raymundo, University of Washington Medical Dermatology Research Fellow (lead author) 
• David Cella, Northwestern University Feinberg School of Medicine 
• Lynne I Wagner, University of North Carolina 
• Daniel S Hippe, Fred Hutchinson Cancer Center 
• Mengyang Di, Fred Hutchinson Cancer Center 
• Joan Guitart, Northwestern University 
• Steven T Rosen, City of Hope Comprehensive Cancer Center and Beckman Research Institute 
• Christiane Querfeld, City of Hope Comprehensive Cancer Center and Beckman Research Institute 
• Michi M Shinohara, University of Washington Department of Dermatology 

Caroline Raymundo highlights the study's findings and its potential to improve patient-centered care in dermatologic oncology. 

What are the main findings of your publication, and why are they important? 

The FACT-CTCL is a disease-specific instrument for assessing health-related quality of life for patients with mycosis fungoides or Sézary syndrome, the two most common subtypes of cutaneous T-cell lymphoma.  

Because of CTCL’s indolent nature, patients’ quality of life is one of the biggest factors that are considered when developing a treatment plan. There is currently no cure for CTCL, and current treatment options have low efficacy and can cause severe side effects. We found that the FACT-CTCL has high reproducibility and good performance in. With our work on the FACT-CTCL, we are getting closer to more accurately measuring quality of life in patients with cutaneous lymphoma, thus improving clinical trials and treatment decisions.  

What makes this research unique or innovative compared to previous work in the field? 

Previous validity studies on health-related quality of life instruments in CTCL evaluated general dermatology instruments or general cancer instruments. However, the FACT-CTCL is one of the first instruments developed specifically for cutaneous lymphoma. We hope that this instrument will capture patients' unique experience with a chronic skin condition that is also a cancer.  

What are the next steps for this research, or what follow-up questions are you hoping to answer? 

We are planning to further validate this novel quality of life instrument by evaluating other measurement properties such as content validity and criterion validity.