I Wish My Doctor Knew: Perspectives on Hope and Meaning in AYAs with Cancer

Outcomes 1. Through presentation of this cross-sectional survey study in AYAs with poor prognosis cancer the attendee will be able to describe the hopefulness of AYAs, define the degree to which AYAs feel peace or struggle with their illness, and explain how AYAs view their providers and their role in decision making.2. Through the presentation of this cross-sectional survey study in AYAs with poor prognosis cancer the attendee will be able to elucidate the demographic factors of AYAs that impact hope, peace, struggle, therapeutic alliance with provider, and decision making. Key Message AYAs with a poor cancer prognosis value being involved in decision making, yet little is known about the optimal approach to support this. We seek to elucidate the key factors to informing and supporting their increased role in medical decision making, including the domains of: hope and meaning, acceptance of illness, therapeutic alignment with providers, and confidence using qualitative methods. Introduction Adolescents and young adults develop cancer at a higher rate than children and suffer worse survival outcomes. Little is known about the optimal approach to support their medical decision-making needs. Methods AYAs with a poor cancer prognosis were surveyed using 4 validated instruments: Hearth Hope Index, Peace and Acceptance of Illness, The Human Connection, and the Child and Adolescent Participation in Decision Making Questionnaire. Descriptive analyses and linear regression were used to assess associations between demographic and clinic variables with patient responses. Results Fifty-seven AYAs participated; median age of 22 years (range: 15- 29); 51% were female. Most were white (68.4%), non-Hispanic (61.4%), single (96.5%), and Christian (66.7%).  Most common diagnosis was sarcoma (38%). Seventy-one percent of AYAs trusted their doctor a great deal; 56% accepted their diagnosis; 77% reported making peace with their illness and 74% felt at least some extent of inner peace. Seventy-seven percent felt beaten down by their illness to at least a slight extent. Sixty-five percent felt scared about the future and 84% endorsed having a positive outlook in life.  Most AYAs felt involved in decision-making (88%) and thought they received the full information to make decisions (86%.) Ninety-three percent agreed that young people should be involved in decision-making and 84% made the decisions on “big things”. Females liked and trusted their providers less than males (P< .05). White participants thought their doctor was more concerned with their quality of life versus non-white participants (P=< 0.01).  Conclusion AYAs value being involved in decision making. More than half of participants accepted their illness and most found peace; yet many still felt the burden of disease and fear about the future. Further work is needed to develop clinical guidelines to facilitate AYA shared decision making with particular attention to the needs of females and non-white AYAs. Keywords Shared Decision Making / Advance Care Planning / Existential / Humanities / Spirituality / Religion