SEATTLE, WA—When Peter Thomas was 10, a snowplow struck the car in which he was traveling with his family. Peter was thrown from the car and his legs were severed below the knees. He spent months in an inpatient rehabilitation hospital, eventually learning how to use artificial legs. A turning point in his recovery was a visit from a bilateral amputee who was full of vigor and optimism.
Thomas says, "A gentleman who had read about the crash drove 200 miles to the hospital. He came into my room in the ICU and in one move jumped out of his prosthetic legs and onto the bed next to mine. He was basically saying, 'This is not the end of your life. You'll do whatever you want to do.' That meant the world to me."
More than 30 million people in the United States receive care for traumatic injuries each year. Trauma centers, which are often located within emergency departments, treat the most serious injuries, which arise from not only car crashes but also gunshots, stabbings, blows to the head, fires, falls, and other calamities. At trauma centers, specialized surgeons and other medical personnel use advanced equipment to provide multidisciplinary emergency services.
A trauma center, with its urgent activity, might seem an unpromising environment for patient-centered care. Medical decision making during the initial treatment—and the later care in hospitals, rehabilitation centers, outpatient clinics, and community settings—is not typically individualized to integrate the patient’s most pressing concerns, says Thomas, now a Washington, DC, lawyer whose practice focuses on rehabilitation and disability issues. “When the chips are down, with someone lying on every stretcher needing treatment, all else goes out the window,” says Thomas. However, he says there are opportunities to make trauma care, both initially and as the patient recovers, more patient-centered.
Thomas is a patient co-investigator in a PCORI-funded comparative clinical effectiveness trial of patient-centered care in trauma care systems. Douglas F. Zatzick, MD, a psychiatrist who works with trauma survivors at the University of Washington, leads the study. It aims to determine whether better care coordination and increased attention to patient concerns can improve outcomes of importance to patients, their caregivers, clinicians, and policy makers. The study’s initial findings indicate that over several months, contact with a care manager who focuses on a patient’s concerns reduces the intensity of those concerns, as compared to patients receiving more typical care.
The team would like to use these and other results to stimulate changes in current guidelines for trauma care. To encourage use of the study’s findings, Zatzick has worked from the start with major US trauma networks and societies including the American Trauma Society (ATS) and the American College of Surgeons (ACS), which issues national trauma care guidelines and provides accreditation to trauma centers.
Zatzick and his colleagues have been listening to trauma patients’ voices for more than a decade. "In 2001, we talked to 101 trauma patients over the course of a year about everything that happened since their injury, tape-recording and then coding their stories,” Zatzick says. They categorized the patients' concerns and documented an association between severe concerns and posttraumatic stress disorder (PTSD) symptoms.
To convince trauma care providers to pay more attention to patient concerns, Zatzick and his colleagues recognized the need for rigorous clinical trials. Zatzick, trauma surgeon Gregory Jurkovich, MD, of the University of California Health System in Sacramento, Joan Russo PhD, Doyanne Darnell, PhD, and other clinicians considered the patient perspective when they initiated studies of psychiatric disorders and substance abuse after trauma.
At a 2011 ACS summit, the team presented data on PTSD and alcohol use. Thomas and other trauma survivors gave intense personal testimony about the need for patient-centered care. The PTSD and alcohol use presentations, but not the personal testimonies, led to changes in the ACS guidelines. "Because we had no data, we were not able to achieve consensus on practice guidelines for patient-centeredness," Zatzick says.
PCORI, which started awarding funds for research soon thereafter, “seemed a natural fit for our work," says Zatzick. His team joined Thomas, Jurkovich, Harry Teter, LLB, of the American Trauma Society, and others to design a comparative clinical effectiveness study to gather the missing data.
What Matters to Patients
The researchers recruited patients being treated for a variety of serious injuries at Harborview Trauma Center in Seattle. The researchers approached the participating patients, some of whom were still on gurneys, and asked the open-ended question: "Of everything that has happened to you since your injury, what concerns you the most?" Answers included concerns about pain and ability to work, economic and legal consequences, the welfare of their children, and psychological issues. The patients then rated the severity of each of their concerns.
The research team selected 171 patients who had indicated three or more concerns, and randomly assigned about half to meet with a social worker care manager, beginning within a few days. This social worker discussed patients’ needs and treatment preferences, helped them communicate with clinicians at the hospital, worked with them to develop a treatment plan, and coordinated follow-up care with physicians and community resources such as social service agencies.
The patients and care managers used a computerized tool developed for the project to identify individuals at risk of difficulties, assess and track patients’ concerns, and facilitate communication among care providers. Patients also received a cell phone for reaching care providers day or night. “People especially liked to text,” Zatzick says.
The other half of the patients received an enhanced version of standard trauma care—the social worker noted and communicated patients’ concerns to hospital staff.
The researchers reached out to patients—in a rehab center or at home—one, three, and six months after their injury. They asked again about concerns, physical and mental function, satisfaction with care, and health service use.
The researchers are now analyzing the data. The initial results suggest the program reduced the intensity of concerns but didn’t have a strong effect on PTSD symptoms or physical function. Subsequent analyses will assess the intervention effect on health service use.
Both Voices and Data
During the project, co-investigators Thomas and patient-advocate officers of the American Trauma Society have met regularly with researchers. "This is my first experience as a co-investigator. I love it,” Thomas says. “I participated in formulating the research design. I'm finding that the whole research team is very open to our points of view and take them very seriously."
One addition to the study protocol introduced by the patient co-investigators was an option for family or friends of the participants to meet with the care manager. The co-investigators also wanted the project to consider peer support. "We pushed hard for that," says Thomas. His commitment to peer mentoring is rooted in personal experience with the gentleman who visited him in the hospital years ago.
The climax of the project was an ACS policy summit hosted by the Zatzick study team on September 23, 2016. During that summit, patient voices, examples of successful programs, and scientific evidence were woven together to indicate that a patient-centered approach to trauma care would result in improvements in patient care and experience, as well as provider satisfaction.
At the summit, the Zatzick study team was joined by a PCORI-funded trauma study team from the Shepherd Center, in Atlanta, trauma researchers funded by federal agencies, NIH staff, patient representatives, trauma and amputee association representatives, and leaders of the American College of Surgeons and its Committee on Trauma. The presentations highlighted the research, patient perspectives, peer mentoring, and current programs to support survivors, families, and trauma care providers.
"This meeting may have differed from the 2011 summit in part due to the growing national narrative about and understanding of, the importance of the patient perspective in healthcare delivery and policy," notes Carly Parry, PhD, MSW, MA, the PCORI program officer for the Zatzick project. “There was interest in developing a recommendation for patient-centered care that leverages available evidence, programs, and approaches identified as important by patients.”
She continues, "While reviewing the Zatzick team’s suggestions for incorporating patient-centeredness into the trauma care, ACS representatives suggested that the team take it further, integrating the information presented at the meeting." They invited the team to submit a formal request to the ACS Committee on Trauma to augment the proposal for patient-centeredness to be included in its clinical practice recommendations.
Zatzick says, “The summit may lead to a recommendation, based on comparative effectiveness research, that trauma centers include attention to patient concerns, including peer support, as an essential aspect of post-injury care.”
A Comparative Effectiveness Trial of Optimal Patient-Centered Care for US Trauma Care Systems
Principal Investigator: Douglas F. Zatzick, MD
Goal: To compare a patient-centered approach with standard trauma care, to see whether a patient-centered approach is more effective in reducing patients’ concerns and improving physical and psychological outcomes.
Posted: October 20, 2016