Development and Testing of the Patient-Reported Chemotherapy Indicators of Symptoms and Experience

Abstract

Outcome indicators are increasingly advocated to demonstrate the impact of high-quality care; however, generic measures do not encompass outcomes relevant to specialist areas. The aim of this study was to develop an outcome measure (Patient-Reported Chemotherapy Indicators of Symptoms and Experience [PR-CISE]) for use in ambulatory chemotherapy settings and assess its feasibility, acceptability, and preliminary efficacy in clinical practice. Three areas were covered by PR-CISE--symptom management, safe medication administration, and experience of supportive care. Outcome selection was guided by review of evidence and reference groups of users, clinicians, and experts. Over 12 weeks, PR-CISE was distributed to patients receiving ambulatory chemotherapy at 10 cancer centers. Data were analyzed descriptively and with case mix adjustment using regression-based models. There were 2466 responses. There was variability across centers in terms of symptom experience and support provided. Across the whole sample, 25% reported moderate or severe nausea; however, rates varied between centers (25%-75%). Similar results emerged for other symptoms. When asked about support for symptom management, 80% reported that chemotherapy nurses asked about and were aware of symptom severity and provided useful information/advice. Once again, there was substantial variability between centers. Unexplained variation remained after case mix adjustment, suggesting that differences may be "real" rather than caused by population differences. Stakeholders planned to make changes to care delivery based on data on their performance. We successfully developed and tested indicators assessing the quality of care provided in ambulatory chemotherapy services. Results show that monitoring outcomes demonstrate potential differences in care quality and provide a stimulus to improve the experience and health of patients.