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

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.

Identification of adolescents and young adults’ preferences and priorities for future cancer treatment using a novel decision‐making tool

“…The ACA methodology and development of MyPref has been previously published 15 . Enrolled participants independently completed the MyPref survey on a tablet computer either in the clinic or the inpatient ward.…”

“…As an introduction to MyPref , participants were asked to imagine a situation in which their cancer/their child's cancer is no longer responding to treatment and to consider the types of things that would be important. Participants were provided with a list and description of the nine treatment attributes identified during the development phase of the study 15 and asked to rank the three most imortant factors in order. Participants were asked to define factors via open text response questions “what does quality of life mean to you?” and “what side effects are most important to consider?”; responses to these queries were included in the final summary report.…”

“…The ACA methodology and development of MyPref has been previously published. 15 The first eight participants (five AYAs and three PTPs) used a think aloud approach during the survey in which they were asked to verbalize what they were thinking, seeing, doing, and feeling as they answered the survey. 16 Based on this approach, modifications were made to the survey page layout, instructions, and wording of factors and levels;…”

“…there were no changes to the factors or factor levels that affected the calculated preferences. 15 The remaining participants completed the revised MyPref independently; a research team member was available to answer questions if needed.…”

“…18 As an introduction to MyPref, participants were asked to imagine a situation in which their cancer/their child's cancer is no longer responding to treatment and to consider the types of things that would be important. Participants were provided with a list and description of the nine treatment attributes identified during the development phase of the study 15 19 After survey completion, participants received a printed version of their MyPref summary report ( Figure 1). Summary reports include estimated attribute importance, which is scaled out of 100 and generated from the estimated part-worths for each factor, with higher numbers indicating greater preference.…”