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

Abstract

Background: Adolescents and young adults (AYAs) with cancer receive high-intensity care and experience significant symptoms at the end of life. As novel cancer-directed therapies increase, AYAs with advanced cancer may face multiple treatment options, each with unique risk/benefit profiles. To augment the AYAs' voice in the decisionmaking process, we developed MyPref, an adaptive conjoint analysis-based tool. Procedure: We conducted a three-staged pilot study of MyPref utilizing an exploratory intervention mixed methods design. AYAs and their identified parent or trusted person (PTP) completed MyPref and received a summary of their preferences for nine treatment-related factors. Participants later engaged in semi-structured interviews to further explore their experience with MyPref. Responses to free text questions and interviews were analyzed using qualitative techniques. Results: Fifteen AYAs with advanced cancer and seven PTPs participated in the pilot. While most participants identified time until cancer grows, quality of life, and side effects to be the most important factors when considering a future treatment, preferences were highly varied. Notably, MyPref-calculated preferences differed from initial rank order, and participants indicated that calculated preferences were accurate in follow-up interviews. Conclusion: The MyPref-calculated preferences varied by individual and differed from initial rank ordering. Additionally, there was variability in how individuals defined and prioritized treatment-related factors. This novel tool may be a useful way to engage AYAs and their PTPs in discussions around preferences for treatment and prepare

Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease

“…Initiation and promotion of this dialogue between children with chronic illness and their support systems is a common theme among palliative interventions. Although a discussion of treatment preferences was historically thought to be potentially distress-provoking, several communication and decision aids have demonstrated the opposite [64,65 ▪▪ ,66,67 ▪ ]. MyPref is a conjoint-analysis based tool that helps to quantify future treatment preferences in adolescents and young adults with cancer [65 ▪▪ ,66].…”

“…Although a discussion of treatment preferences was historically thought to be potentially distress-provoking, several communication and decision aids have demonstrated the opposite [64,65 ▪▪ ,66,67 ▪ ]. MyPref is a conjoint-analysis based tool that helps to quantify future treatment preferences in adolescents and young adults with cancer [65 ▪▪ ,66]. In a pilot study of MyPref, this tool served to engage paediatric cancer patients in treatment discussions, share their preferences with their caregivers and prepare for future decision-making, with only one participant experiencing stress as a result of participation [65 ▪▪ ,66].…”

MyPref: pilot study of a novel communication and decision-making tool for adolescents and young adults with advanced cancer

“…Study methods have been described in full elsewhere [10]. Eligible participants included English-speaking patients aged 15-30 with a diagnosis of cancer that had progressed despite initial therapy.…”

“…We conducted a single-arm, pilot study of MyPref in AYAs with advanced cancer, their PTPs, and oncology providers and assessed the utility of MyPref with a mixed methods design. A separate paper describes the preferred role in decision-making and preferences and priorities of AYAs and their PTPs identified using MyPref [10]. In this analysis, we sought to examine the clinical usefulness of MyPref, exploring if MyPref can help prepare AYAs to make medical decisions, if summary reports are understandable and useful in augmenting communication and decision-making, and the optimal timing of completion of MyPref during the treatment course.…”

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences

“…8 Various models of pACP for adolescents with a serious illness are being developed, 9 , 10 , 11 , 12 , 13 along with tools to guide conversations. 14 , 15 , 16 …”