Kidney Transplant Patients' Perceptions, Beliefs and Barriers Related to Regular Nephrology Outpatient Visits

Despite understanding the importance of post-transplant nephrology visits, kidney recipients skipped appointments because they wanted independence from doctors; believed they could manage their bodies; and faced numerous post-transplant physical and emotional challenges, according to this study.

Previous research has shown that skipping nephrology visits after a kidney transplant is associated with increased risk of graft failure; and that patients who are of an ethnic minority, have a lower median household income or are living within 10 miles of a transplant center are less likely to attend all their visits. Thirty-nine patients of one Upper Midwest transplant center who were at least one year post-transplant and had at least one of these risk factors were either interviewed or participated in a focus group to explore why they skipped nephrology visits. This is believed to be the first study to examine the beliefs and perceptions regarding nephrology visits of kidney transplant recipients.

Key Findings:

  • Patients understood the importance of and felt positive about appointments but there were still perceived barriers to attendance.
  • Patients valued their independence from medical care in their post-transplant, dialysis-free life and saw keeping appointments as a loss of freedom and a reminder that they were still patients.
  • As time passed after transplant, patients felt increasing confidence about their ability to take care of themselves. For some minorities, this is reinforced by a culture that highly values self-reliance.
  • Patients also cited “feeling bad” physically and emotionally.
  • Nephrology appointments created anxiety that the doctor would uncover a problem.

Recipients reflected that they were probably not prepared for the emotional and physical ups and downs in post-transplant life. Researchers suggest peer-to-peer networking and counseling could help recipients feel better about themselves and motivate them to take control of their care and attend appointments.