BOSTON — After barriers to participating in the care of patients awaiting kidney transplant were reported by friends and family, researchers began investigating ways to empower these social support networks and to increase their engagement in the transplant process, according to Allyson Hart, MD, MS, of Hennepin County Medical Center in Minnesota.
“We are exploring how to better support transplant patients and candidates through a complex process,” Hart told Healio/Nephrology at the American Transplant Congress. “The discovery that friends and family were as important as they are was the surprising thing that led us to this phase of the research. We’ve talked to patients. We’ve talked to physicians and now, we’re talking to friends and family.”
Hart said that the initial research project was primarily focused on patient-physician discussions and on creating educational tools just for patients, such as a risk calculator to help patients understand their personal likely outcomes based on their own characteristics. The project expanded when, during focus groups and interviews, patients continually returned to speaking about their social support networks.
According to Hart, researchers soon found the role of friends and family was not limited to “some vague emotional support” but, rather, was significant to cognitive support as well.
“Patients talked about how they would get all of this information from transplant centers and packets of documents and they’d have their friends and family read through them and pick out what was relevant to them,” Hart said.
In addition, Hart highlighted that living donation increases when friends and family are included in home counseling interventions with health psychologists/educators and patients but, while helpful, these long and intensive interventions are not always feasible for transplant centers.
With the importance of social support networks in mind, researchers conducted another focus group, this time for the friends and family of a candidate who was currently listed for kidney transplant (57.1% were spouses; 42.9% were siblings).
Of all participants, 57.1% reported getting most of their information on transplant from the candidate, while 14.3% did their own research and 28.6% got information from the center.
The most commonly reported barriers to engagement of care were feelings of isolation and disconnection, helplessness when trying to provide support and a desire to do more to support the candidate but not knowing how.
Researchers also found participants felt that the candidates under-recognized the effect that kidney disease has on the family.
Researchers will be incorporating the data collected from these different sources into an intervention that will be piloted this upcoming fall at the University of Minnesota and Hennepin County Medical Center.
The goals of the intervention will initially be to determine how to get friends and family into the transplant center and then, how this can be translated to other centers.
“We do a lot of things in research that get published and then aren’t incorporated into clinical practice,” Hart concluded. “That’s not what we want to do. Our focus is on feasibility, implementation and scalability. So, the pilot will be focused on those things and then we’ll hopefully roll it out to a multicenter clinical trial.” – by Melissa J. Webb
Hart A, et al. Abstract C115. Presented at: American Transplant Congress. June 1-5, 2019; Boston.
Disclosure: Hart reports no relevant financial disclosures.