Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool

J Adolesc Young Adult Oncol. 2019 Apr;8(2):212-216. doi: 10.1089/jayao.2018.0116. Epub 2018 Oct 25.

Abstract

Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options.

Keywords: advance care planning; communication; conjoint analysis; decision-making; end-of-life care; quality of life.

MeSH terms

  • Adolescent
  • Adult
  • Advance Care Planning / standards*
  • Child
  • Cluster Analysis
  • Communication*
  • Decision Making*
  • Decision Support Techniques
  • Family / psychology
  • Female
  • Follow-Up Studies
  • Health Personnel / statistics & numerical data*
  • Humans
  • Male
  • Neoplasms / therapy*
  • Patient Care Planning / standards*
  • Patient Preference / psychology*
  • Patient Preference / statistics & numerical data
  • Prognosis
  • Quality of Life
  • Young Adult