Development of a patient decision aid for the management of superficial basal cell carcinoma (BCC) in adults with a limited life expectancy

Alexandra Junn,Dominick L Frosch,Dominick L Frosch,Eleni Linos,Mary-Margaret Chren,Neha R Shukla,Jeanette S Torres,Lily Morrison,Meghan Halley,Meghan Halley,Louise C Walter,Louise C Walter,Dan Matlock,Dan Matlock

doi:10.1186/s12911-020-1081-8

Abstract

BackgroundBasal 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.ObjectivesThis 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.MethodsIn 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.ResultsWe 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.LimitationsThe PDA does not include all possible treatment options and is currently paper based.ConclusionsOur 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.

Highlights

Basal cell carcinoma (BCC) is a slow-growing, rarely lethal skin cancer that affects people 65 years or older
A method of addressing the unique needs of an older adult with low risk BCC incorporates the use of shared decision making (SDM), which is facilitated by the use of Patient Decision Aids (PDAs) [6]
We predominantly interviewed the providers with regards to the development of the decision aid, since they were responsible for discussing the diagnosis with the patient and the treatment options

Summary

Introduction

Basal cell carcinoma (BCC) is a slow-growing, rarely lethal skin cancer that affects people 65 years or older. More patients are diagnosed with basal cell carcinoma (BCC) in the US than all other cancers combined, with more than 3.2 million cases of BCC each year, compared to 1.7 million other cancer cases [1]. A method of addressing the unique needs of an older adult with low risk BCC incorporates the use of shared decision making (SDM), which is facilitated by the use of Patient Decision Aids (PDAs) [6]. Gafni and Whelan describe SDM as involving 4 components, which we incorporated into our PDA: 1) 2 participants – the physician and patient, 2) both parties share information, 3) both parties are involved in the steps to identify the preferred treatment and 4) a treatment agreement is reached [7]

Objectives

Methods

Results

Conclusion