Junn A, Shukla NR, Morrison L, Halley M, Chren MM, Walter LC, Frosch DL, Matlock D, Torres JS, Linos E., BMC Med Inform Decis Mak. 20(1):81. doi: 10.1186/s12911-020-1081-8., 2020 Apr 29
Investigators
Dominick L. Frosch, Ph.D., Director, PAMFRI
Abstract
BACKGROUND: Basal cell carcinoma (BCC) is a slow-growing, rarely lethal skin cancer that affects people 65 years or older. A range of treatment options exist for BCC, but there is little evidence available to guide patients and providers in selecting the best treatment options.
OBJECTIVES: This study outlines the development of a patient decision aid (PDA) for low-risk BCC that can be used by patients and providers to assist in shared decision-making.
METHODS: In accordance with the International Patient Decision Aids Standards (IPDAS) Collaboration framework, feedback from focus groups and semi-structured interviews with patients and providers, an initial prototype of the PDA was developed. This was tested using cognitive interviews and iteratively updated.
RESULTS: We created eighteen different iterations using feedback from 24 patients and 34 providers. The key issues identified included: 1) Addressing fear of cancer; 2) Communicating risk and uncertainty; 3) Values clarification; and 4) Time lag to benefit.
LIMITATIONS: The PDA does not include all possible treatment options and is currently paper based.
CONCLUSIONS: Our PDA has been specifically adapted and designed to support patients with a limited life expectancy in making decisions about their low risk BCC together with their doctors.