Supporting Clinical Practice Decisions With Real-Time Patient-Reported Outcomes
Authors: Ethan Basch, Amy P. Abernethy
Journal: Journal of Clinical Oncology (2011)

Obtaining symptom information from patients is fundamental in cancer care decision making. Improvements in symptoms often indicate a therapy is working, whereas worsening symptoms may reflect disease progression or an adverse event. Clinical decisions, for example, a treatment change (eg, reduction of chemotherapy dose for fatigue), beginning a supportive therapy (eg, providing an antiemetic for nausea), triaging for additional medical services (eg, psychosocial care), or additional evaluation of a complaint (eg, imaging a patient with abdominal pain postoperatively) may be made on the basis of patient-reported data. How do we currently obtain symptom information from patients in clinical practice? This information is either elicited from patients at visits as part of a review of symptoms, or patients must remember to tell us because we do not ask, or patients must call between visits with particularly bothersome or worrisome complaints. These approaches are inefficient and may not adequately detect symptoms for optimal or timely symptom management. In the case of in-clinic reviews of symptoms by clinicians, it has been demonstrated that clinicians systematically underestimate patients’ symptoms, and that many symptoms go unrecognized. As for calls from patients between visits, this approach is not systematic and depends on each individual patient’s threshold for calling, rather than predetermined symptom thresholds. As a result, it is not uncommon in oncology that patients arrive in the office with severe symptom complaints that have been ongoing: “Mrs. Jones, why didn’t you call the office about your severe nausea and diarrhea after chemotherapy?” “Sorry, Doctor, I thought that was normal after chemotherapy, and I didn’t want to bother you.” Patient self-reporting of symptoms in the clinic waiting room or between visits via electronic interfaces has been shown to be feasible and efficient, to increase patient satisfaction with care, to be valued by clinicians as supporting documentation and to support clinical decisions, and to improve symptom management as well as patients’ overall quality of life. Clinicians will hold or dose reduce chemotherapy on the basis of patient-reported symptoms. Nurses will intervene between visits when they receive information about patient self-reported symptoms; this lowers the likelihood that a patient will arrive for a visit with severe symptoms. Sensitive information such as sexual concerns or alcohol use is more likely to be obtained via electronic symptom monitoring, and to be more reliable compared with face-to-face reporting. The time has come for electronic patient interfaces that allow symptom reporting to become a part of standard clinical cancer care. Several institutions have instituted such programs as a part of standard care or as a part of research evaluations to study the impact of such approaches on care delivery. These institutions include Duke University, Memorial Sloan-Kettering Cancer Center, Johns Hopkins, MD Anderson Cancer Center, Dana-Farber Cancer Institute, Cancer Care Ontario, and The West Clinic in Memphis, among others. On the basis of the work performed at these institutions, as well as accumulated experiences with the implementation of patientreported outcomes in clinical trials, a number of desirable system features have emerged; these are listed in Table 1. These features are related to selection of symptom questions/items, functionalities of patient and staff interfaces, inclusion of notification/alert systems, patient education, and integration of back-up data collection. One of the major challenges of integrating patient self-reporting systems into clinical practice is to engage clinicians. Although most agree that it is important to capture the patient experience, it is less clear how best to mesh patient self-reporting into existing clinical care workflows without overburdening existing staff or hiring a battalion of new personnel. It is key to present clinicians with information at appropriate times that are relevant for decision making, communication with patients, and multidisciplinary interaction. Information must facilitate clinical processes such as documentation, billing, patient flow, and patient education. But this is easier said than done. Clinicians are busy and appropriately resistant to paradigm changes that involve new processes or that require review of additional materials. Thus, any new approach must be relatively easy to use, with clear and immediate value. Two articles in this issue of Journal of Clinical Oncology address the issues of engaging providers and integrating electronic patientreported outcomes into current clinical workflows; both articles provide evidence that it can indeed be accomplished in a manner that is easy for clinicians and that demonstrates value. Cleeland et al describe a controlled trial in which all patients self-reported symptoms via an automated telephone system postoperatively, and patients were randomly assigned either to have or not have real-time automated alerts sent to clinicians for symptom severities of concern. An 11% absolute decrease in severe symptom events was observed in the e-mail–alert group, with high overall satisfaction with the system. Most clinicians (84%) responded to the automated alerts. There are two important implications of this study: clinicians will integrate automated symptom alerts into their existing clinical workflows, and doing so adds value by yielding better symptom control. The surgical setting of this study is also innovative and raises the question of whether postoperative complications might be avoided through the use of such systems. It is not clear if clinicians valued the approach or wished it to continue after the research activities ended, although the high rate of use by clinicians suggests enthusiasm. Berry et al address a related area of clinical workflow: discussions between patients and providers. This article addresses whether Editorials