The Rationale for Collecting Patient-Reported Symptoms during Routine Chemotherapy

Abstract

Patient-reported outcomes (PROs) such as symptoms and functional status are commonly measured in clinical trials. There is increasing interest to integrate PROs into routine clinical practice, for example during chemotherapy or postoperatively. There are several rationales for this. First, patient self-reporting improves patient-clinic communication, symptom detection, and symptom control. Second, patient-reported data may be used for quality assessment. Third, aggregated patient-reported data can be informative in comparative-effectiveness research (CER). Of particular interest is an approach that employs electronic collection of PROs with interfaces to the electronic health record (EHR) and clinician alerts for concerning symptoms. Multiple systems have been developed in oncology with these characteristics. Barriers to implementation exist, such as cost, logistics, EHR interfacing, data representation, and data interpretation, but have been largely overcome. Missing data remain a concern, but backup data collection strategies can bring self-report compliance rates up to about 85% in unselected routine care patients with advanced cancers. Overall, including patient self-reporting in routine care enhances quality of care and patient satisfaction, and is expected to become more common in the future. American Society for Clinical Oncology (ASCO) has several ongoing initiatives to develop standards and clinical practice tools in this area.