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PROs 101: What practices need to consider if implementing digital symptom monitoring with patient-reported outcomes in routine cancer care for the first time

PROs 101: What practices need to consider if implementing digital symptom monitoring with patient-reported outcomes

Multiple clinical trials have demonstrated benefits of symptom monitoring using patient-reported outcomes during systemic cancer therapy. This care enhancement generally includes software that prompts patients to self-report their symptoms on a regular basis via a survey, using a computer or connected device (e.g., weekly). Severe or worsening symptoms trigger alert notifications to the care team to react and manage concerning symptoms. Research has shown that this approach improves patients’ symptom control, quality of life, physical function, reduces emergency room visits and hospitalizations, and lengthens survival. Therefore, this care enhancement is of high interest in quality programs and value-based care.

Implementation requires selection of a software system, selection of what symptom questions to include, training patients, monitoring patient compliance, allocating administrative staff time to train patients, and allocating clinical staff time to receive and react to alert notifications. On average, about 30% of surveys will trigger an alert, so for a clinical staff member (e.g., a navigator) managing a panel of 100 patients, there will be up to 30 alert notifications each time all patients self-report. This represents about a 5% clinical staff effort.

Steps should include:

  • Select a software system. This can be through a commercial vendor or through native EHR functionality. Homegrown systems are generally not recommended unless very robust.
  • Select symptoms to monitor and a source questionnaire for these symptoms. Common symptoms to include across cancer populations include pain, nausea, vomiting, constipation, diarrhea, dyspnea, anxiety/depression, insomnia, reduced oral intake, and physical function decrements (e.g., patient-reported ECOG or frailty or fatigue). Additional areas of growing interest for patent self-report include financial toxicity and social determinants of health. A “free text” box for unsolicited symptoms should also be included. Using an established validated questionnaire as a source of these items is highly advised, such as the NCI’s PRO-CTCAE, the EORTC QLQ-C30, PROMIS, or ESAS.
  • Identify a clinical champion and an administrative leader to develop and monitor the program.
  • Approach implementation as a quality improvement project, using the usual tenets of QI.
  • Make it clear to administrative and clinical staff that this is an expectation of the practice.
  • Make it clear to patients that this is an expected part of care, that is valued by providers.
  • Monitor patient compliance, and monitor clinical staff responsiveness to alert notifications. Continuously evaluate compliance and adjust to optimize. In general, a practice should be able to get patient compliance up to about 75%, and clinical staff should be reaching out to patients for about half of the alert notifications.

Benefits to a practice of these programs include early identification of problems developing among patients — to catch problems early before they lead to substantial downstream consequences, such as avoidable hospitalizations, unnecessary suffering, or complicated clinic visits for uncontrolled symptoms. These systems improve patient overall satisfaction and loyalty to a practice, as people feel more connected and attended to by their care team.

Ethan Basch, MD, MSc
Richard M. Goldberg Distinguished Professor and Chief of Oncology UNC School of Medicine
Physician-in-Chief North Carolina Cancer Hospital
Professor of Health Policy and Management
UNC Gillings School of Global Public Health
Director, Cancer Outcomes Research Program
UNC Lineberger Comprehensive Cancer Center