Questionnaires measure quality-of-life impact of carcinomas

In an effort to learn more about patients’ experiences with advanced basal cell carcinoma (aBCC) and basal cell carcinoma nevus syndrome (BCCNS), researchers have developed two new questionnaires to evaluate and assess the effects of the diseases.

The questionnaires were developed by researchers from Health Outcomes Solutions, Genentech, Saint Louis University School of Medicine and the University of California, San Francisco.

“Our study focused on developing questionnaires to study patient reported outcomes (PRO) for patients with both advanced basal cell carcinoma and basal cell nevus syndrome, and to measure the disease effects of basal cell carcinomas on their quality of life,” study co-author Scott W. Fosko, M.D., chairman of the Saint Louis University School of Medicine’s department of dermatology, tells Dermatology Times. “We found that basal cell carcinoma has significant impact on many areas of quality of life for both groups of patients, in the areas of emotional, social and physical functioning. Overall, basal cell carcinoma, the most common skin cancer in our population, can have very significant effects on our patients and impact their quality of life in many ways.”

The researchers interviewed 30 patients for the questionnaire, 14 with aBCC and 16 with BCCNS, along with four physicians, including two dermatologists, a Mohs surgeon, and an oncologist. Ten patients, five with aBCC and five with BCCNS, also participated in cognitive debriefing interviews. The questionnaires were developed based on these interviews and on literature reviews.

More than 60 percent of the patients interviewed were male, and more than 90 percent were white. The patients’ mean age was 57 years. Patients reported impacts on their social, emotional and physical functioning due to aBCC and BCCNS. Patients either avoided certain activities or reported being unable to participate in some activities.

All of the patients with BCCNS reported scarring, while 79 percent of patients with aBCC had scarring.

The findings were published online in JAMA Dermatology.