Patient, provider, and nurse preferences regarding patient-reported outcomes (PRO) and side effect management during cancer treatment of minority, rural and economically disadvantaged patients.
Authors: Tawfik Bernard , Quezada Karen , Burgess Ellen , Kosich Mikaela , Jaffe Shoshana Adler , Guest Dolores D , Brown-Glaberman Ursa Abigail , Pankratz V. Shane , Dayao Zoneddy R. , Sussman Andrew 
Published: June 2021

e18652

Background: Side effects from treatment significantly impact quality of life and patients ability to continue cancer therapy. Patient Reported Outcomes (PRO) tools have been shown to significantly improve multiple key cancer endpoints including overall survival. However, preferences for PRO tool components, such as contact modality, is not well studied in minority, rural and low-income patient populations. As the only National Cancer Institute (NCI) Designated Cancer Center within a 500-mile radius, we care for the urban/rural, multiethnic communities we serve with tremendous cancer health and socioeconomic disparities. This study evaluated patient, provider and nurse perspectives with the goal of optimizing PRO tools for our unique population. Methods: A survey was developed to assess preferred PRO contact modality. Additional survey domains included side effect burden, quality of life, financial hardship and nutritional services accessed. The survey was offered to all patients receiving IV chemotherapy in the center infusion suite from June to August 2020 using the REDCap platform. Providers and nurses (P/N) were surveyed via email. Survey responses were analyzed using SAS 9.4 and compared via chi-square test where appropriate. Results: Ninety patient surveys were collected; 51.1% were minorities (44.4% Hispanic), 35.6% were rural and 40.0% had income < $30,000. All patients had access to a communication device but 12% did not have access to a cell phone of any kind. Device access included 68% smart phone, 20% cell phone, 22% landline, 53% computer, 39% tablet. Patients preferred a response to reported side effects within 0-3 hours (73%) while only 29% of 55 P/N surveyed shared this expectation (p < 0.0001). Almost half (48%) of patients felt side effect management was a moderate or significant issue with 58% experiencing nausea and/or vomiting, 41% diarrhea, 34% weight change, 33% pain, and 22% mucositis. While 72% of patients experienced nutritional related side effects and 95% of P/N preferred to answer nutritional issues by referring to a dietitian, only 9% of patients reported being referred. The majority of patients reported side effect quality of life implications (60.3%) or missed work / were unemployed (82%). Conclusions: In a minority, rural and low-income patient population, 88% of patients had access to a cell phone communication device, with smart phone access in the majority. Patients and P/N reported significantly different expectations regarding side effect management. Our data suggests an underutilization of nutritional referrals by P/N, despite a recognition of value. This study informs the implementation of a PRO tool to address side effects and develop nutritionist referral strategies in minority, rural and low-income patient populations.