Patient and Provider Perspectives on Symptom Monitoring During Outpatient Chemotherapy: Interview Study

Abstract

Background Fluctuating symptoms and side effects are common during outpatient cancer treatment, and approaches to monitoring symptoms vary widely across providers, patients, and clinical settings. To design a remote symptom monitoring system that patients and providers find to be useful, it may be helpful to understand current clinical approaches to monitoring and managing chemotherapy-related symptoms among patients and providers and assess how more frequent and systematic assessment and sharing of data could improve patient and provider experiences. Objective The goals of this study were to learn about patient and provider perspectives on monitoring symptoms during chemotherapy, understand barriers and challenges to effective symptom monitoring at one institution, and explore the potential value of remote symptom monitoring between provider visits. Methods A total of 15 patients who were currently undergoing or had recently completed chemotherapy and 7 oncology providers participated in semistructured interviews. Interviews were transcribed and coded using an iterative thematic analysis approach. The study was conducted at a National Cancer Institute–Designated Comprehensive Cancer Center. Results Four main themes were discussed by patients and providers: (1) asynchronous nature of current methods for tracking and managing symptoms, (2) variability in reported symptoms due to patient factors, (3) limitations of existing communication channels, and (4) potential value of real-time remote symptom monitoring during chemotherapy. Current asynchronous methods and existing communication channels resulted in a disconnect between when symptoms are most severe and when conversations about symptoms happen, a situation further complicated by memory impairments during chemotherapy. Patients and providers both highlighted improvements in patient-provider communication as a potential benefit of remote real-time symptom monitoring. Providers also emphasized the value of temporal data regarding when symptoms first emerge and how they progress over time, as well as the potential value of concurrent activity or other data about daily activities and functioning. Patients noted that symptom monitoring could result in better preparation for subsequent treatment cycles. Conclusions Both patients and providers highlighted significant challenges of asynchronous, patient-initiated, phone-dependent symptom monitoring and management. Oncology patients and providers reported that more routine remote monitoring of symptoms between visits could improve patient-provider communication, prepare patients for subsequent chemotherapy cycles, and facilitate provider insight and clinical decision-making with regard to symptom management.