Kidney donors mostly satisfied with primary care-driven model of follow-up care
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Key takeaways:
- Researchers found that 70% of kidney donors surveyed were satisfied with follow-up care.
- Donors desired more educational information at follow-up regarding nutrition, diet and living donor outcomes.
Living kidney donors in Canada were mostly satisfied with long-term care and follow-up but expressed the need for specialist care when new issues arose and more information about outcomes and lifestyle, according to survey results.
“The findings suggest a long-term model of donor care organized by transplant centers and administered in partnership with primary care providers would optimally address the long-term health and information needs of living donors,” Sunita K. Singh, MD, a transplant nephrologist at Toronto General Hospital and assistant professor in the division of nephrology at the University of Toronto, and colleagues wrote in the study published in Clinical Journal of the American Society of Nephrology.
Kidney donors may require specialized care and long-term follow-up to maintain their health, according to the researchers. However, in Canada there are no national requirements concerning follow-up parameters, resulting in what the researchers called a “patchwork” of care provided by PCPs, the transplant center and nontransplant nephrologists. In the United States, donors must submit follow-up data for 2 years, after which there are no long-term care requirements.
This motivated the researchers to investigate Canadian kidney donor perspectives concerning follow-up after donation to help create a national standard of long-term donor care.
First, the researchers conducted 12 semi-structured 30-minute interviews with living kidney donors, from which they identified three main themes: the importance of health maintenance, positive health outlook and variable energy soon after donation.
Researchers then developed the survey based on these themes, feedback from clinical and research teams, and pilot testing.
Next, they surveyed 685 living kidney donors (63% women; 81% white) aged 36 to 81 years who were recruited via email or by their clinician from the two largest transplant programs in Canada based in Toronto and Vancouver.
Researchers found that of participants surveyed, 53% were 55 to 77 years old and 54% donated their kidney within the last 2 to 11 years.
Most respondents (75%) reported receiving follow-up within the first year after donation. Further, more than two-thirds (73%) of donors received this care from a PCP, followed by transplant centers (11%) and nontransplant nephrologists (5%).
Seventy percent of participants attended annual follow-up appointments related to their donation, which included blood and urine tests and blood pressure measurement.
Also, 71% reported receiving reminders from their transplant center about follow-up care, the receipt of which led to greater appointment attendance vs. not receiving such reminders (86% vs. 68%).
Researchers also found that 70% of donors surveyed were satisfied with their follow-up care and 67% agreed or strongly agreed that they were provided with enough support after their procedure.
Additionally, most donors wanted annual follow-up (68%), lifelong follow-up (66%) and in-person follow-up (71%), although 50% of the respondents viewed telehealth appointments as acceptable.
Finally, the researchers found that 86% of donors agreed or strongly agreed that a PCP should be involved in their long-term care, whereas 33% wanted their follow-up with a transplant nephrologist or nephrologist, and 82% wanted or expected their transplant center to intervene if they experienced kidney problems.
Most respondents agreed or strongly agreed that that follow-up should include information concerning their kidney health (77%), changes in kidney function (82%), long-term donor health (68%) and new research related to transplantation (59%). Forty-nine percent of participants agreed that follow-up should include educational information about diet and nutrition, and 61% of respondents listed participation in research as a motivating factor to attend follow-up.
Researchers noted several limitations to this study, including that the socioeconomic characteristics of the patients surveyed may have influenced their health care access and satisfaction with care.
“The findings may be somewhat less applicable to the U.S. because of the absence of a government-funded lifelong health care system which may limit donor access to a primary care physician,” Singh and colleagues wrote. “Our findings may be useful in advocacy efforts to establish a dedicated system of long-term donor follow-up in the U.S.,” they added.
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