O3210: Quality of Life as Defined by Adolescents and Young Adults with Advanced Cancer

Background: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life as a central goal of their end-of-life care. Quality of life is a dynamic and subjective overarching concept which refers to an individual’s relative satisfaction with their life and encompasses but is not limited to one’s health status. Despite its importance, a patient-centered, comprehensive definition of quality of life is lacking in this population.

Methods: This study was a qualitative secondary analysis of semi-structured interviews across three institutions and one online advocacy community. Participants included AYA patients (12-39 years old) with stage IV or recurrent cancer as well as family caregivers and clinical providers who cared for living or recently deceased AYAs. Clinical providers included physicians, nurses, nurse practitioners and psychosocial providers. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software and coded by two reviewers for primary analysis. For this analysis, previously coded interview excerpts were manually screened by one reviewer for relevancy to quality of life. This included phrases about quality of life, top priorities or most important considerations, value-based preferences of how to spend time, overall life satisfaction or a subjective appraisal of life’s condition. Relevant excerpts were re-sorted thematically into organizing domains, which were refined with group input, and differences between AYAs of different ages were examined.

Results: Participants included 23 AYA patients, 28 family caregivers, and 29 clinical providers (15 physicians, 6 nurses/nurse practitioners, and 8 social worker/psychologists). Among AYA patients, 22% were 12-24 years old and 78% were 25-39 years old. Five domains of quality of life were identified: psychological and physical distress, dignity, goal concordant care, normalcy, personal and family relationships (Table 1). Across all ages, maintenance of personal and family relationships was the most frequently referenced domain of quality of life. Within each domain, there was agreement between AYAs, caregivers, and care providers, with nuanced perspectives provided by AYAs of different ages. Older AYAs (25-39 years old) more frequently referenced psychological comfort (psychological and physical distress) and the importance of independence in maintaining their family role as a parent or partner (dignity, goal concordant care). Younger patients (12-24 years old) more frequently referenced the importance of meeting age-appropriate milestones alongside peers (goal concordant care, normalcy). Participants noted their perspectives changed throughout the disease course, reflecting the response shift model of quality of life.

Conclusion: While quality of life takes on highly individualized meanings, AYAs with advanced cancer, their caregivers, and clinicians agree on several broad domains. In order to provide high-quality, patient-centered care among this population, it is necessary to consider how care plans can best integrate these domains and enable AYAs with advanced cancer to maximize their quality of life.