Dr. Marie-France Demierre of Boston University School of Medicine, Director of Skin Oncology, collaborated with the Cutaneous Lymphoma Foundation on an extremely important study, that of our patients’ health-related quality of life. Health-related quality of life is a multidimensional term that includes the physical, functional, psychological, social health, and well-being of the individual. Dr. Demierre has believed for several years that cutaneous T-cell lymphoma patients’ health-related quality of life was often overlooked in patient care. Her own experience taught her that unless one could improve patients’ sleep or itch, one would not be able to completely improve their health.
In collaboration with Ms. Judy Jones, Executive Director and co-founder of the Foundation and with the approval of the Board of the Cutaneous Lymphoma Foundation, she and her colleagues developed a comprehensive survey that addresses all the dimensions of health-related quality of life. The survey’s goal was to evaluate patients’ perspectives regarding the impact of cutaneous T-cell lymphoma and its treatment on their lifestyle, occupation, emotional health, and social condition. In March 2005, the survey was sent to the Foundation’s mailing list, as well as made available online, on the Foundation website. All anonymous responses from the completed surveys (from the paper and online versions) were compiled by Dr. Demierre and her team at Boston University. The data was analyzed and the results were recently published in the important peer-reviewed journal CANCER. The article was titled “Significant Impact of Cutaneous T-cell Lymphoma on Patients’ Quality of Life: Results of a 2005 National Cutaneous Lymphoma Foundation Survey.”
“An impressive 68% of all members with cutaneous T-cell lymphoma completed the survey. While the majority had early stage mycosis fungoides, the responses were compelling with 94% reporting that they worried about the seriousness of their disease and 80% worrying about dying from the disease” said Dr. Demierre. Other findings were the following: 94% of members who responded were bothered by skin redness, 88% by pruritus, and the extent of symptoms affected the choice of clothing in 63%. For most, the disease had a functional impact, making them tired or affecting their sleep. Sixty-two percent felt that their disease made them unattractive. Although 85% felt that their treatment made their disease more manageable, 61% reported feeling financially burdened by their disease.
Dr. Demierre and her team also performed a special analysis of all the questions and of their relevance. A key finding was that 5 important themes stood out, those of role functioning, health distress, treatment satisfaction, symptoms of disease, and emotional well-being. Furthermore, these 5 themes could differentiate those members with early stage disease as opposed to those members with later stage disease. In other words, while all participants reported a significant impact of CTCL 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. “This study was humbling. I was shocked to see how for almost all responding members, CTCL had a major impact on their quality of life. We physicians need to do a better job when we care for our patients. We need to acknowledge the emotional aspect and social impact of the disease on our patients. We should strive to improve their functioning,” said Dr. Demierre. She further added that physicians may not fully appreciate the financial burden that the disease is placing on patients.
“I am personally indebted to all the CTCL members who took the time to complete the survey. Their responses and input were so important and they will shape the future care of our patients,” she concluded. Her dream is that physicians will routinely ask health-related quality of life questions of their patients about their functioning, and that clinical trials will begin to consistently address what may be the most important to patients, their quality of life. She is already working on these next challenges.
Ground-breaking Quality of Life Research