Do You Hear What I'm Saying?
When we think of what’s essential in cancer care, the complexities of surgery, radiation, and pharmaceutical treatment immediately come to mind. But we may overlook a key component that’s an everyday part of life: talk.
“Communication is so vital,” says Pam Seijo, a 53-year-old cancer survivor from West Virginia. “It’s a hard thing to be told you have cancer. Knowing your doctor listens to what you have to say, and will talk about it with you, helps you get through the process.”
Beyond providing technically appropriate treatment, healthcare providers must use effective communication and listening skills to help patients cope with a serious diagnosis. “Cancer takes over your life and your family’s life. I was fortunate to have a phenomenal healthcare team to talk with. I felt they were onboard with me,” Seijo says.
She also knows that not all are so lucky. “I’ve heard from some patients, ‘My doctor won’t listen to anything I say.’”
Seijo is now a patient-partner in a PCORI-funded research project addressing the communication problem head-on. The team is devising a survey to measure the quality of patient-clinician conversations. Such a tool is needed to explore whether, and how, good communication eases the burdens of disease and improves patients’ lives.
Lauren McCormack, PhD, MSPH
Communication Means Collaboration
“When you ask patients about the quality of their care, they often define it in interpersonal terms,” rather than by technical expertise, says Lauren McCormack, PhD, MSPH, of the nonprofit research organization RTI International. McCormack co-leads the project along with Bryce Reeve, PhD, of the University of North Carolina at Chapel Hill (UNC).
“Patient-centered communication is a two-way street between patients and healthcare providers,” says McCormack, who directs RTI’s Center for Communication Science. “Empowering patients to be active participants is key to patient-centered care.”
Besides inviting open exchange of information and shared decision making, clinicians who engage in patient-centered communication express empathy for patients’ emotions, help them manage uncertainty, and encourage and help them to care for themselves.
Considerable research supports the links between good patient communication with healthcare professionals and greater satisfaction with care, adherence to treatment, and quality of life. But while it seems that improvements in communication should translate into better clinical outcomes—such as disease management, quicker recovery, and improved survival—evidence as of yet is scant, McCormack says. The surveys typically used to measure patient-centered communication are not based on a conceptual model, have not been thoroughly tested, and don’t reflect all aspects of patient-clinician communication.
Without a standardized, reliable, and valid measure, it’s hard to identify effective interventions to improve patient-clinician communication. Designing and validating the overall measure is the goal of the PCORI-funded study. “The development process has been extensive and rigorous, with a number of precursor projects,” McCormack says. Patients have been deeply involved from the beginning.
Earlier work by McCormack and colleagues produced a draft survey instrument. The current project is honing it into a reliable and valid instrument for use in research, quality improvement, and potentially clinician training. For example, it could be used to compare the effectiveness of different educational interventions or treatments and their impact on patient-clinician communication, as well as clinical outcomes.
McCormack says, “Undertaking this kind of project requires a collaborative team that includes health communication scientists, clinicians, psychometricians, data collection experts, along with patient and stakeholder involvement and a committed advisory panel. We are fortunate to have all of these components on our team.”
Bryce Reeve, PhD
A Focus on Cancer, for Now
Although a reliable measure of patient-centered communication would be useful for all illnesses and in primary care, the current study focuses on colorectal cancer. Reeve observes, “In cancer, emotional distress is high, there’s often a fair amount of uncertainty about treatment, and multiple providers are involved, adding complexity to the communication and decision making process.” In fact, the National Cancer Institute sponsored most of the earlier research on patient-centered communication.
In the recently completed phase of the project, the researchers went through the draft survey with 17 colorectal cancer patients who were diverse with respect to age, education, race, and ethnicity. In think-aloud interviews, the patients answered the survey questions and described how they came up with their answers. “They were asked to reflect on which items seemed most important and how they interpreted the questions,” McCormack says.
In response to the patients’ valuable input, the research team refined the questions (see box) to more accurately reflect how patients think about communication and what matters to them. In some questions, for example, an option was added to recognize that some patients prefer not to discuss their feelings or personal lives with their doctors.
The researchers will give the revised survey, which has about 50 questions for evaluation purposes, to hundreds of colorectal cancer patients shortly after diagnosis and again a few months later. The team will assess how well the survey captures the types and quality of communication that can occur during cancer treatment and whether patients report that their communication with healthcare providers had been positive and informative, involving them in decision making in the way they preferred.
Nancy Roach
Communication in Action
Throughout the study, the research team has been working in partnership with the patient advocacy group Fight Colorectal Cancer (FCRC). Besides providing support for patients and their families, lobbying for research dollars, and awarding research grants of their own, the organization trains volunteers to “bring the patient perspective to the research table, so patients can participate effectively in the research process,” according to Nancy Roach, FCRC founder and chair of the board.
Roach sits on the PCORI-funded project’s Stakeholder Advisory Panel (with Seijo and other patients). The panel also includes clinicians and experts in patient-clinician communication. “Over time, as the researchers learn more about us, and we learn more about what they’re doing, the conversation is getting deeper; we’re able to provide more help in the real-world setting,” Roach says.
During the first phase of the study, Roach and other patient-partners suggested changes to the survey’s content and language, and helped recruit study participants. FCRC members timed how long it took patients to do the survey, “which may sound like a small thing, but gets down to the nitty-gritty,” Roach says.
During stakeholder-researcher conference calls, she says, “we have a patient tell his or her own story; the researchers listen, ask questions, and use that information in the discussion. It’s really powerful.”
The project seems itself a model of open, caring communication. “The investigators have been really great,” Roach notes. “They’ve always said, ‘Your input is critical. Bring it on.’” Suggestions from patient-partners on the stakeholder panel, for example, helped researchers develop a letter sent to patients with the survey explaining why they were collecting data and encouraging participation in the study. Input from patient-partners made the letter more patient-centered. “It clearly explained the purpose of the survey and emphasized how much we valued participants’ contributions,” McCormack says.
Roach remembers being devastated when she received her cancer diagnosis 12 years ago. She says, “I have this desire to make sure that when other people go through that, doctors listen to what they say.”