ABSTRACT: Background/AimsPatient-centered communication (PCC) is a critical element of patient-centered care, which the Institute of Medicine (2001) promulgates as essential to improving healthcare delivery. The National Cancer Institute?s Strategic Plan for Leading the Nation (2008) calls for assessing the delivery of PCC in cancer care. However, no comprehensive measure of PCC exists, and stakeholders have different conceptualizations and assumptions about how to measure it. The purpose of our study was to develop a set of self-administered patient survey items for comprehensive PCC assessment.MethodsOur approach was grounded in the PCC conceptual framework, as presented in the NCI monograph, Patient-Centered Communication in Cancer Care (2007), which defines six functions of PCC:First, we developed a comprehensive inventory of measurement domains and subdomains, aligned with the PCC functions, by reviewing relevant literature, consulting experts, and conducting a small qualitative study involving patient interviews. Next, we inventoried over 100 survey and other measurement instruments, identifying over 1,300 possible items. We evaluated items using a systematic question appraisal system, adapted existing measures as appropriate, and developed new questions to fill identified gaps. Finally, we tested more than 200 survey questions with cancer patients (n=46) using cognitive interviews.ResultsOverall, the findings from the cognitive interviews suggest that the survey questions function well. Patients were generally able to understand the questions and apply them to their own experiences. Many participants reported that the questions reflected important aspects of their interaction with providers.ConclusionsThe draft PCC survey items can now be used for population surveillance, quality assessment, and intervention research in the context of cancer care. Although the survey items focus on PCC with respect to cancer care, many are relevant to all patients as patient-centered care is a goal for health care generally. We discuss challenges of PCC assessment, including measuring communication experiences across different care settings, types of clinicians, and stages in the cancer care continuum. Measuring PCC longitudinally over the course of care and balancing parsimony and comprehensiveness are important considerations.
