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

BMC Med Inform Decis Mak. 2020 Apr 29;20(1):81. doi: 10.1186/s12911-020-1081-8.

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.

Keywords: Basal cell carcinoma; Decision aid; Older adults; Shared decision making.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Carcinoma, Basal Cell / therapy*
  • Clinical Decision-Making
  • Decision Support Techniques*
  • Focus Groups
  • Humans
  • Interviews as Topic
  • Life Expectancy
  • Middle Aged
  • Patients
  • Skin Neoplasms* / therapy