"I've never personally discussed the cost of anything:" Adolescent and Young Adult Patients with Cancer Experiences and Preferences for Cost-of-Care Conversations.

Abstract

Purpose: Cancer organizations recommend cost-of-care (CoC) information be provided to patients with cancer by their care teams. Little is known about the CoC conversation experiences and preferences of adolescents and young adults (AYAs) with cancer. Methods: Eligible participants were 18-39 years old, diagnosed with cancer, and insured. Recruitment occurred at two cancer centers in Utah from October 2019 to March 2020. Data were collected via survey and semistructured telephone interviews, which were recorded and transcribed. Interview questions pertained to willingness, perceived usefulness, and past experiences with CoC conversations with their cancer care team. Interviews were analyzed by applying two rounds of thematic content analysis. Summary statistics were calculated for demographics, health insurance literacy, and financial toxicity. Results: Among 24 participants, half were aged 18-25 and half were aged 26-39 at interview and survey, with many currently receiving treatment (62.5%). Four qualitative themes emerged concerning CoC conversations (1) past experiences, (2) willingness, (3) usefulness, and (4) preferred provider. In interviews, most AYAs shared interest in discussing CoC, but previous CoC conversations were infrequent. Most AYAs who had previous CoC conversation experiences brought up the topic themselves. Interview data revealed that preferred individuals to lead CoC conversations were often social workers (25.0%), nurses (20.8%), or oncologists (20.8%), while others wanted any provider knowledgeable in financial matters (20.8%). Conclusions: AYA patients are willing to have CoC conversations; however, they infrequently occur. Future work may include interventions that guide clinicians in initiating in-depth CoC discussions with AYAs.