Preferences of Pediatric Patients and Their Caregivers for Chemotherapy‐Induced Nausea and Vomiting Control Endpoints: A Mixed Methods Study

PURPOSE: Although not always achieved, complete chemotherapy-induced nausea and vomiting (CINV) control is the conventional goal of CINV prophylaxis. In this two-center, mixed-methods study, we sought to understand the preferences of adolescent patients and family caregivers for CINV control endpoints. We also aimed to describe their CINV experience, CINV management strategies, and openness to learning new antiemetic interventions. METHODS: English-speaking patients with acute lymphoblastic leukemia (ALL) (13-18 years), or family caregivers of patients with ALL (<18 years), with a history of moderate to severe CINV and who were in or had recently completed maintenance treatment were eligible. We conducted semi-structured, virtual, or in-person interviews with participants using an interview guide. Interviews included direct questions and open-ended questions asking participants to think-aloud. Interviews were audio-recorded and transcribed verbatim. Direct question response proportions were determined. Thematic analysis of the responses to open-ended questions was undertaken. RESULTS: Twenty-nine interviews (23 caregivers and 6 adolescent patients) were conducted. Participants reported that reductions in nausea frequency (caregivers: 77%; adolescent patients: 83%) and severity (caregivers: 85%; adolescent patients: 83%), even without complete resolution, were very important. Responses regarding vomiting control were similar. Patients and caregivers also believed that preservation of appetite and maintenance of diet and usual activities were important CINV control endpoints. Major themes emerged revealing the creativity and resilience shown by patients and caregivers in their CINV management approaches. Almost all patients and caregivers were interested in learning new strategies for CINV control. CONCLUSION: Antiemetic interventions should be evaluated using both conventional CINV control endpoints and those that are important to patients and caregivers.