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.
- 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.