Symptom Care at Home: A Comprehensive and Pragmatic PRO System Approach to Improve Cancer Symptom Care.

ABSTRACT

INTRODUCTION: There is growing recognition that systematically obtaining the patient's perspective on their health experience, using patient-reported outcomes (PRO), can be used to improve patient care in real time. Few PRO systems are designed to monitor and provide symptom management support between visits. Patients are instructed to contact providers between visits with their concerns, but they rarely do, leaving patients to cope with symptoms alone at home. We developed and tested an automated system, Symptom Care at Home (SCH), to address this gap in tracking and responding to PRO data in-between clinic visits. The purpose of this paper is to describe SCH as an example of a comprehensive PRO system that addresses unmet need for symptom support outside the clinic. METHODS FOR PRO SCORE INTERPRETATION: SCH uses pragmatic, single-item measures for assessing symptoms, which are commonly used and readily interpretable for both patients and providers. We established alerting values for PRO symptom data, which was particularly important for conserving oncology providers' time in responding to daily PRO data. METHODS FOR DEVELOPING RECOMMENDATIONS FOR ACTING ON PRO RESULTS: The SCH system provides automated, just-in-time self-management coaching tailored to the specific symptom pattern and severity levels reported in the daily call. In addition, the SCH system includes a provider decision support system for follow-up symptom assessment and intervention strategies. DISCUSSION: SCH provides PRO monitoring, tailored automated self-management coaching, and alerts the oncology team of poorly controlled symptoms with a provider dashboard that includes evidence-based decision support for follow-up to improve individual patients' symptom care. We particularly emphasize our process for PRO selection, rationale for determining alerting thresholds, and the design of the provider dashboard and decision support. Currently, we are in the process of updating the SCH system, developing both web-based and app versions in addition to interactive voice response phone access and integrating the SCH system in the electronic health record.