Patient, provider, and nurse preferences of patient reported outcomes (PRO) and side effect management during cancer treatment of underrepresented racial and ethnic minority groups, rural and economically disadvantaged patients: a mixed methods study

Purpose The purpose of this study was to evaluate patient, oncologist and nurse perspectives on side effects and patient reported outcomes (PROs) with the question of how to optimize side effect management and PRO tools in this unique population. Methods This pilot study utilized a mixed method explanatory design. Patients receiving intravenous (IV) chemotherapy from June to August 2020 were surveyed about side effect burden and PRO system preferences. Providers and nurses (PN) completed complementary surveys. Semi-structured phone interviews were conducted among a subset of each group. Results Of 90 patient surveys collected; 51.1% minority, 35.6% rural, and 40.0% income < $30,000, 48% felt side effect management was a significant issue. All patients reported access to a communication device but 12.2% did not own a cell phone; 68% smart phone, 20% cell phone, 22% landline, 53% computer, and 39% tablet. Patients preferred a response to reported side effects within 0–3 h (73%) while only 29% of the 55 PN surveyed did ( p < 0.0001). Interviews reinforced that side effect burden was a significant issue, the varied communication devices, and a PRO system could improve side effect management. Conclusion In a non-White, rural and low-income patient population, 87.8% of patients reported owning a cell phone. Although all agreed side effect management was a prominent issue, expectations between patients and PN differed substantially. Qualitative data echoed the above and providing concrete suggestions to inform development of a PRO program and side effect mitigation strategies among a diverse patient population.