1474 - Morbidity in Advanced Basal Cell Carcinoma (BCC) and BCC Nevus Syndrome (BCCNS) from the Patient (PT) and Physician Perspective: Development of a Patient-Reported Outcome (PRO) Questionnaire

Abstract

ABSTRACT Purpose Although BCC is the most common skin cancer, the pt experience is not well understood. In a small subset of BCC pts, extensive invasion to subcutaneous structures can lead to locally advanced disease or metastases (advanced BCC (aBCC)). BCCNS is a rare genetic condition associated with life long, multiple BCCs. BCCNS pts may also develop aBCC. Lesions are common in sun-exposed areas such as the face and upper trunk and may result in disfiguring scars. To inform the development of a PRO questionnaire, qualitative concept elicitation interviews were conducted with aBCC and BCCNS pts and physicians. Methods In an IRB approved study, interviews were conducted in pts > 18 yr diagnosed with aBCC or BCCNS and physicians using an interview guide containing open-ended questions about impact of symptoms on functioning and well-being. Transcripts from each 1 hr interview were analyzed. Results A total of 30 pts were interviewed, comprised of 14 aBCC (locally advanced, n = 8 and metastatic, n = 6; 73% male) and 16 BCCNS (50% male) pts. Mean (SD) age for aBCC pts was 64 (11) and 51 (10) for BCCNS pts. A variety of patient experiences were reported (eg, bleeding, oozing wounds, vision problems). Physical appearance, including scarring and disfigurement affected 73% of pts. 80% of pts made lifestyle changes such as avoidance of outdoor activities, meeting new people, and intimate relationships. Assistance in tasks was often needed. Emotional effects, including worry about when and where the next lesion would appear, were evident in BCCNS pts (81%). Physicians (n = 4) noted that aBCC pts worry about cancer in general and the possibility of more tumors, while BCCNS pts face tumor recurrence, multiple surgeries and disfigurement. Based on the interview results and lack of existing PRO questionnaires capturing these concepts, 2 questionnaires were developed for aBCC and BCCNS. Conclusion aBCC and BCCNS can have significant and unique impacts on well-being, appearance, daily and emotional functioning, and overall quality of life. Results from an ongoing validation study will be used to finalize these PRO questionnaires. Disclosure S.D. Mathias: Susan D Mathias is an employee of Health Outcomes Solutions, which was paid by Genentech Inc to undertake this study. M. Chren: Consultant for Genentech Y.M. Yim: Roche employment and stock ownership H. Colwell: Consultant for Genentech and Health Outcomes Solutions C. Reyes: Roche employment and stock ownership D.M. Chen: Roche employment and stock ownership S.W. Fosko: Consultant for Genentech