Abstract
Previous studies have called for further research to explore adolescent and young adult (AYA) decision-making in the context of advanced cancer to understand the perspectives of this understudied population. We conducted a qualitative study with patients and providers to better understand the decision-making experience of AYA patients with advanced stages of cancer. Semistructured qualitative telephone interviews were conducted from April 2016 to October 2016. English-speaking AYAs and healthcare providers were recruited through the social media sites Twitter and Facebook. AYAs were eligible if they were aged 18-39 years at diagnosis and self-reported having metastatic cancer; any provider who worked with AYAs with metastatic cancer was eligible. Researchers with expertise in qualitative methods conducted inductive thematic content analysis of transcribed interviews. The analyzed data were used to formulate recommendations for clinicians. Twelve AYA patients with self-reported stage IV cancer and five clinicians who care for AYAs with advanced stages of cancer were enrolled and shared their experience about AYA medical decision-making. Four primary themes emerged: (1) AYAs describe receiving unclear prognosis, (2) AYAs balance concepts of hope and risk, (3) AYAs choose aggressive treatment options, and (4) AYAs want support facing mortality. Recommendations for clinicians include clear communication about prognosis and side effects and concerted efforts to elicit patient values. AYA patients and clinicians provided insights into the experiences and decision-making processes of AYA patients choosing to continue or discontinue treatment and into the areas for improvement in patient-centered oncology care. Taken together, these data provide important suggestions for clinicians caring for this vulnerable population.
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