DOI: 10.3886/icpsr39491.v1
title: Measuring Patient-Centered Communication for Colorectal Cancer Care and Research [Methods Study], North Carolina, 2013-2018
title: Version 1

description: Patients are often more satisfied with care when it matches their goals. To provide care that matches what matters to patients, doctors and other clinical staff need to communicate well with patients so they can learn about their needs and concerns. Healthcare organizations can use patient surveys to measure how well clinicians communicate with patients. To be useful, a survey needs to be

 Valid, or correctly capturing how well doctors communicate
 Reliable, or getting the same results over time 

In this study, the research team created and tested a survey for patients getting care for colorectal cancer that asked about communication between the patient and their care team.
description: To develop and evaluate the Patient-centered Communication in Cancer Care (PCCCa) 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.
description: Higher levels of PCC are associated with better ratings of quality of life, satisfaction with health care, and other patient outcomes. To address the need for a standard measure of PCC in cancer care, the research team developed and tested an instrument based on a National Cancer Institute conceptual framework. This framework defines six domains of PCC:

 Exchanging information
Fostering healing relationships
Making decisions
 Responding to emotions
Enabling patient self-management
Managing uncertainty

Before the study, the research team conducted a literature review, observed oncologist-patient encounters, and interviewed patients to develop survey items intended to measure PCC for colorectal cancer care.
During survey development, the research team interviewed 17 patients with colorectal cancer to test draft PCC survey items. The team assessed how patients understood and responded to the questions and eliminated some items that patients did not understand.
During survey testing, the research team surveyed adults in the North Carolina Central Cancer Registry. Participants were age 21 or older, had a recent colorectal cancer diagnosis, and could read and write in English. The team mailed the first survey two to three months after diagnosis. Two months later, the team sent a follow-up survey to those patients who responded to the first survey to assess whether answers changed over time. Patients could complete the mailed survey or a web-based version. A total of 501 patients responded to the first survey, and 360 patients responded to the second one. Of those who responded to the first survey, 81% were white, 14% were black, and 5% were another race. The average age was 67 years, and 51% were female.
To determine how well the survey items matched the National Cancer Institute's conceptual framework of PCC, the research team used confirmatory factor analysis. The team identified the best items to measure each domain of PCC using item response theory and then evaluated validity and reliability of the instrument.
Throughout the study, the research team included a panel of patient advocates, clinicians, and researchers to ensure that the survey items captured aspects of communication that are important to patients with colorectal cancer.
description: The study team 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, the study team 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).
description: Datasets: 
DS1: Measuring Patient-Centered Communication for Colorectal Cancer Care and Research [Methods Study], North Carolina, 2013-2018