Adolescents' and Young Adults' Perspectives on Decision-Making and the Emotional Experience of Having Advanced Cancer.

Abstract

Adolescents and young adults (AYAs) with advanced cancer represent a unique and vulnerable population. Little is known about the optimal approach to support their medical decision-making needs. The objective of this cross-sectional survey study was to elucidate the perspectives of AYAs with advanced cancer regarding their emotional experience of having cancer and their decision-making needs. Between April 2020 and December 2023, AYAs with advanced cancer were surveyed using the Herth Hope Index (HHI), the Peace, Equanimity, and Acceptance of Cancer Experience scale (PEACE), The Human Connection scale (THC), and the Child and Adolescent Participation in Decision Making Questionnaire (CAPDMQ). Descriptive analyses, t-tests, and Wilcoxon rank-sum tests were used to assess associations between demographic and clinic variables with patient responses. Fifty-seven AYAs participated. The median age was 22 years (range: 15-29); 51% were female. Majority of participants were White (68%), non-Hispanic (61%), single (96%), and Christian (67%). The most common diagnosis was sarcoma (39%). Most participants reported acceptance and peace with their illness, yet many struggled with changes in physical appearance, the unfairness of getting cancer, and angry feelings related to their illness. Participants also reported high levels of therapeutic alliance with their doctors. These AYAs reported remaining hopeful and future oriented despite their prognosis. They also reported a strong belief that AYAs should be involved in decision-making. Most AYAs accepted their illness and found peace, yet many still felt the burden of disease and fear about the future. Despite this, they felt hopeful and remained future oriented. AYAs value being involved in decision-making; further work is needed to develop clinical guidelines to facilitate shared decision-making for this population.