What was the research about?
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.
What were the results?
The research team developed survey questions on six aspects of communication that the National Cancer Institute has identified as important:
- Exchanging information, such as how often doctors ask patients about their concerns
- Supporting healing relationships, such as whether doctors and patients develop a trusting relationship
- Making decisions, such as how well doctors involve patients in choosing treatment
- Responding to emotions, such as how well doctors show concern for patients’ feelings
- Enabling patient self-management, such as how well doctors help patients learn ways to take care of themselves
- Managing uncertainty, such as how well doctors explain how symptoms may change
The research team created two versions of the survey. One version asked 36 questions, while a shorter version asked 6 questions, one for each of the topics. Both versions gave valid and reliable information about patient-doctor communication.
Who was in the study?
The research team tested questions with 17 patients with colorectal cancer. Then, the team sent the long version of the survey to 501 patients in North Carolina. Of these patients, 81 percent were white, 14 percent were black, and 5 percent were another race. Patients were age 21 or older, had a recent colorectal cancer diagnosis, and could read and write in English. The average age was 67, and 51 percent were women. Two months later, 360 of these patients filled out a follow-up survey.
What did the research team do?
Before the study, the research team looked at other studies about how well doctors communicate with patients. They also watched patients talking with their doctors and interviewed patients with colorectal cancer. The team used this information to create survey questions.
Then the research team asked 17 patients with colorectal cancer to read and answer a set of questions. The team changed or removed survey questions that weren’t clear.
Next the research team tested the survey with 501 patients with colorectal cancer. They looked at which questions best measured each aspect of communication. The team also tested whether both the long and short versions of the survey came up with consistent results when used many times.
Patient advocates and doctors were part of the research team and gave input on the survey.
What were the limits of the study?
The research team tested the survey only with colorectal cancer patients. Also, the team tested the survey only with English speakers. The results may differ for patients who speak other languages. Future studies could test similar surveys with patients with other cancer types and different health problems.
How can people use the results?
Healthcare organizations can use the survey to understand how well doctors communicate with their patients with colorectal cancer and to help them improve.
To develop and validate a measure of patient-centered communication (PCC) for colorectal cancer care
|Design||Survey instrument development and testing|
|Data Sources and Data Sets||
Survey instrument development: interviews with 17 colorectal cancer patients
Survey instrument testing: survey responses from 501 colorectal cancer patients
Interview data: qualitative analysis of interview data
Survey data: exploratory factor analysis, item response theory modeling, tests for differential item functioning, reliability, and construct validity assessment
|Validated survey instrument measuring PCC in cancer care|
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.
The research team created a conceptually based measure of PCC, with a 6-item short-form version and a 36-item version. Both versions provide a reliable and valid measure of PCC overall. The 36-item measure also provides reliable and valid measures of each of the six domains of PCC individually.
The research team tested the survey with patients with colorectal cancer who spoke English. Results may differ for patients who speak other languages or have other types of cancer.
Conclusions and Relevance
This study produced a valid measure of PCC for cancer care based on input from patients with colorectal cancer. Healthcare providers and health systems can use the survey to help improve patient-centered care for patients with colorectal cancer.
Future Research Needs
Future studies could test the survey with patients diagnosed with other cancer types and different health conditions.
Final Research Report
View this project's final research report.
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Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented, and the researchers made changes or provided responses. The comments and responses included the following:
- Reviewers questioned the broader applicability of the study, given that researchers interviewed and surveyed only colorectal cancer patients and that the socioeconomic status of participating patients was generally high. The researchers agreed that more research is necessary to validate their Patient-Centered Communication in Cancer Care (PCC-Ca) measure across patients with other types of cancer and a wider range of socioeconomic statuses. They noted the study’s limitations in the report and added citations to support the assertion that experiences of colorectal cancer patients are similar to those of patients with other types of cancer.
- Reviewers wondered if lower than expected sample sizes affected analyses and the study’s statistical power. The researchers said the low enrollment didn’t hinder evaluation of the PCC-Ca measure but did affect the ability to test for racial or ethnic group differences on individual scale items.
- Reviewers noted a lack of data on whether the PCC-Ca scale is responsive to interventions. The researchers responded that testing for the measure’s responsiveness to interventions was beyond the scope of this study but a critical next step for future research.
- Reviewers asked if the PCC-Ca scale had the power to detect and measure differences in subgroups, e.g. groups with different ages or health status. The researchers said subgroup analysis was beyond the scope of this study and not part of their analysis.
- Reviewers noted that the study did not link use of the PCC-Ca scale to improvements in health outcomes and suggested that use of the scale would be an undue burden on patients without evidence of improved health outcomes. The researchers responded that answering the survey is not time consuming and that the current study did not aim to measure effects on health outcomes. Although, such research would be a helpful future step.
Conflict of Interest Disclosures
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Final Research Report
View this project's final research report.
- Has Results