Dr. Marie-France Demierre of Boston University School of Medicine, Director of Skin Oncology, collaborated with the Cutaneous Lymphoma Foundation in 2005 on a study of patients’ health-related quality of life.

The study found that five important themes affected the quality of life of cutaneous lymphoma patients:

• role functioning
• health distress
• treatment satisfaction
• symptoms of disease
• emotional well-being

Here is a summary of the findings:

• 94% reporting that they worried about the seriousness of their disease
• 80% worried about dying from the disease
• 94% of members who responded were bothered by skin redness
• 88% were bother by pruritus
• 63% reported that the extent of symptoms affected the choice of clothing
• for most, the disease had a functional impact, making them tired or affecting their sleep
• 62% felt that their disease made them unattractive
• 85% felt that their treatment made their disease more manageable
• 61% reported feeling financially burdened by their disease

While all participants reported a significant impact of Cutaneous T-Cell Lymphoma on their health-related quality of life, those identifying themselves as having more advanced disease had an even more significant impact on their health-related quality of life. There is only one conclusion: physicians and family members need to acknowledge the emotional aspect and social impact of this disease on patients, and need to address what may be the most important to patients, their quality of life.

To read more about this study, visit www.clfoundation.org/research/QOL_study.html.