Creation of a quality of life instrument for nonmelanoma skin cancer patients

Objective: Malignancies of the skin are the most common cancers among humans. The cervicofacial region is most affected by cutaneous malignancies, with approximately 80% of nonmelanoma skin cancers (NMSC) occurring in the head and neck. Treatment of cervicofacial skin cancers also is more likely to result in significant patient morbidity, because of the functional and cosmetic importance of this region. Unlike other malignancies, skin cancer has not been well investigated in terms of patient quality of life (QOL) assessment. Furthermore, no validated disease‐specific QOL instrument currently exists for skin cancer. The aim of this study was to construct a new QOL instrument, The Facial Skin Cancer Index (FSCI), that captures the relevant QOL issues for NMSC patients. Study Design: Cross‐sectional study of patients presenting to a dermatologic surgery clinic with NMSC of the head and neck. Methods: For stage I, item generation, a sample of 20 patients with cervicofacial NMSC and six health care providers specializing in the care of NMSC patients completed semistructured interviews. For stage II, item reduction, a second sample (n = 52) of NMSC patients rated the items in terms of their importance for QOL among skin cancer patients. Domains of the FSCI were evaluated in terms of data quality, item variability, internal consistency, and range and skewness of scale score on aggregation and floor and ceiling effects. Results: A total of 71 distinct items were generated in stage I. After using the outlined item reduction techniques in stage II, the FSCI was reduced from 71 to 36 items, representing 6 domains. With the exception of Physical Functioning (alpha = 0.63) that suggested adequate reliability, all subscale scores showed excellent reliability coefficients, with Cronbach's alpha ranging from 0.78 (Lifestyle) to 0.87 (Social/Family). Conclusions: A new disease‐specific QOL instrument for patients with NMSC of the head and neck has been created. Validation studies are currently underway. Future directions will include sensitivity analysis to determine whether the FSCI is sensitive to change over time among patients undergoing treatment for NMSC.