“It’s kind of like graduation,” a kidney transplant patient said at a focus group in Minneapolis. After surgery, the patient explained, you need less medical attention. It feels like you’ve graduated from the transplant surgery and are starting a new life.
But transplant patients’ newfound sense of freedom has a downside too, according to a new study by Robert Wood Johnson Foundation (RWJF) Physician Faculty Scholar (2007-2010) Ajay Israni, M.D., M.S. That sense of leaving your cares behind is one reason kidney transplant patients often fail to keep regular appointments with nephrologists after receiving a kidney transplant, Israni found—and that translates into higher risk for complications and organ failure.
The study—“Kidney Transplant Patients’ Perception, Beliefs & Barriers Related to Regular Nephrology Outpatient Visits”— was published this month in the American Journal of Kidney Disease. Israni, an associate professor of medicine and adjunct associate professor of epidemiology and community health at the University of Minnesota School of Medicine, conducted the study under the auspices of the RWJF Physician Faculty Scholars program.
It’s not that patients don’t understand the need for follow-up outpatient visits with nephrologists, Israni said. Focus groups that he and his research team conducted at Hennepin County Medical Center in Minneapolis showed that patients knew the importance of nephrologist visits. But perceived barriers—such as a sense that they could interpret their bodies and take care of themselves without consulting physicians, fear of exposure to illness and physical health problems—prevent many from keeping regular appointments.
The study builds on Israni’s previous research into disparities in care. In a study published in 2009, Israni found that patients who do not keep regular follow-up appointments with nephrologists share similar characteristics: They are ethnic minorities, have low household incomes, and live fewer than 10 miles from transplant centers.
“We know these patients had a lower number of follow-up visits, but wanted to understand the perceptions and beliefs regarding the barriers to their appointments with a nephrologist,” Israni says.
Israni and his co-authors arranged for impartial moderators to hold structured one-on-one interviews and focus groups with patients.
The interview subjects, who had been on dialysis for as long as five years before surgery, clearly understood the consequences of not seeing nephrologists regularly and reported positively on their appointments and interactions with their nephrologists and clinic staff, he found. Participants also said that their nephrologists knew their health histories better than any other type of doctor and that the support they received during treatment met their needs.
But patients began to lose touch with their providers after transplant surgeries because of a burgeoning sense of independence, the study found. Patients felt confident in their ability to take care of themselves without consulting a physician. Their feelings of self-reliance and confidence increased over time, especially if no complications arose and if the patients reported “feeling fine.”
“This process makes you more intuitive,” a patient said. “[T]he transplant patients get more in tune with their body… It’s like I got to really know who I am and know my body.”
Transplant also brings mental and physical health challenges that prevent patients from keeping regular appointments. Not feeling physically well deters them from going to appointments, patients said, as do concerns about compromised immunity and potential exposure to contagion in transit or in clinic waiting rooms. Patients also cited anxiety associated with possible bad news about their health as a barrier to getting follow-up care.
Patients who built relationships with other transplant patients, however, were more likely to keep regular appointments. Hearing from a fellow patient, whether she or he is waiting for a transplant or has undergone one, helped current patients anticipate and cope with the physical and mental challenges inherent to kidney transplantation.
“[T]he more you know, the less you fear,” one patient said. “[I]t’s so good that it helps to build that confidence in order to go ahead and make that decision and take that step and it’s definitely really, really important and sometimes… motivating. You learn from them and their experiences.”
Israni hopes the study will be used to create interventions that address barriers to follow-up care for kidney transplant patients. “Obviously, we hope that physicians can exploit some of these factors to encourage their patients to keep their regular nephrology appointments, and to be aware of the physical and mental challenges post-transplant to minimize these barriers,” he said.