Measuring How Well Patients with Colorectal Cancer and Their Doctors Communicate [Internet]

Excerpt

Background: Patient-centered communication (PCC) contributes to patient satisfaction, health-related quality of life, and other important patient outcomes. The National Cancer Institute's Conceptual Framework of Patient-centered Communication defines 6 core functions: exchanging information, making decisions, fostering healing relationships, enabling patient self-management, managing uncertainty, and responding to emotions. However, researchers and health professionals need a standard measure of PCC to assess how well patients and clinicians communicate across these 6 functions.

Objectives: To develop and evaluate the Patient-centered Communication in Cancer Care (PCC-Ca) measure, a conceptually based, patient-reported measure of communication between health professionals and patients for use in evaluation of quality improvement efforts, monitoring and surveillance of PCC, and research. The study aims were to (1) conduct cognitive interviews with colorectal cancer patients to test and refine the items, (2) conduct a longitudinal survey of colorectal cancer patients to evaluate the psychometric properties of the items, and (3) develop short and long forms of the PCC-Ca for various applications.

Methods: We finalized a set of PCC survey items for testing and conducted cognitive interviews with colorectal cancer patients (n = 17)—recruited through the University of North Carolina at Chapel Hill Lineberger Comprehensive Cancer Center—to test and refine the survey items (aim 1). To establish reliability and validity, we pilot tested the items in a longitudinal survey using a statewide sample of colorectal cancer patients in North Carolina (n = 501) recruited through the North Carolina Central Cancer Registry (aim 2). We conducted psychometric analyses to inform the design of the final PCC-Ca measure, including confirmatory factor analyses, item response theory modeling, and tests for differential item functioning (aim 3). To ensure that the PCC-Ca measure captured aspects of communication important to patients and that it met the needs of end users, we collaborated with a multidisciplinary stakeholder panel that included a patient advocacy group.

Results: The survey sample (n = 501) was distributed evenly by gender; it was 80% White, 13% Black, and 3% other race/ethnicity, with a mean age of 67 years. Reliability within each of the 6 PCC functions ranged from α = .90 to .96. The 36-item long form (α = .94) and 6-item short form (α = .92) differentiated well between individuals with poor health and good health and with poor quality of life and good quality of life, supporting known-groups validity (P < .01 for all groups). The long and short forms were highly correlated with an existing communication-related scale from the Health Information National Trends Survey (r = 0.79 and 0.76, respectively), and with perceived quality of care (r = 0.67 and 0.67, respectively), supporting convergent validity. The mean (SD) overall PCC score was 4.1 (0.74); mean scores ranged from 4.4 (fostering healing relationships function) to 3.9 (managing uncertainty and enabling patient self-management functions).

Conclusions: This research resulted in a theoretically grounded measure of PCC that is reliable and valid based on a statewide sample of colorectal cancer patients. It also shows the feasibility and value of engaging patients and other stakeholders in a measurement development study. Use of the PCC-Ca measure in diverse settings and with diverse patient populations can help identify best practices and highlight critical areas for improvement in PCC.

Limitations and Subpopulation Considerations: We limited the initial development of the measure to colorectal cancer and to a single state population. Focusing on a single cancer type allowed us to characterize the relevance of the various aspects of PCC and how they may or may not change over the course of treatment for this cancer type. However, we expect that the measure is likely to be applicable in a broader range of cancers and settings. Future studies should examine PCC in other cancer types, settings, and populations. Also, the PCC-Ca measure should be translated into languages other than English.