Educating CKD Patient's Family Encourages Kidney Donation

Norra MacReady

November 04, 2009

November 4, 2009 (San Diego, California) — Informal gatherings where social workers and nurse clinicians chat with friends and relatives of patients with chronic kidney disease (CKD) over the course of their illness improve understanding of the disease and promote kidney donation, investigators reported here at Renal Week 2009: American Society of Nephrology 2009 Annual Meeting.

In a pilot study conducted in Rotterdam, the Netherlands, nephrologists, nurses, and social workers organized "parties" in the homes of 10 patients with moderate to severe CKD who were expected to progress to dialysis. To be included in the study, patients had to have stage 3 or 4 CKD and an estimated glomerular filtration rate of 35 mL/min or less.

At each gathering, social workers described the basic aspects of CKD, including the medical, social, and psychological consequences of being a kidney patient. They also discussed the various treatment options available, including dialysis and living and deceased donor transplantation. A nurse practitioner was on hand to answer questions and provide more information.

An average of 5 friends or relatives attended each session. They gave the program unanimous accolades for enhancing their understanding of the disease and the patient's outlook. But there was a more clinically significant result: in every case, within 3 months of attending one of these get-togethers, someone from the patient's social circle stepped forward to offer a kidney.

"We were surprised by that development," senior author René MA van den Dorpel, MD, PhD, a nephrologist at Maasstadziekenhuis in Rotterdam, said in an interview. "Our main objective was not to recruit kidneys — our primary goal was to educate the patients and family. This shows that most relatives were willing to think about helping their loved ones." In many cases, this was the first time the patient and their family discussed living kidney donation, said Dr. van den Dorpel.

Live donors are in short supply in the Netherlands, as they are in many other countries. The average waiting time for a kidney is 4 to 5 years, about the same as it is in the United States, Dr. van den Dorpel said.

Often, the general population does not realize how serious renal disease can be or what dialysis really entails, and the idea of donating a kidney might not occur to them. Even patients are not always aware of their options. Through these relatively small gatherings, "something is getting into motion in the minds of these patients and their family and friends."

He suggested that the low-key atmosphere might be one reason for the program's success. "We do not directly ask for a kidney; we just say living donation is a good option, but we say it to 10 to 15 people at a time. In our experience, this approach leads to people contacting us about a month later to offer one of their kidneys."

"I think this is a great idea, because it's using the family's home for the education and helping to reach people who might not otherwise be educated," said Lori Hartwell, a 3-time kidney transplant recipient and founder of Renal Support Network (RSN), a patient advocacy group based in Glendale, California. "Patients spend a good portion of their time visiting doctors and nurses, so it's nice to have something where they're in their own home environment, not a board room where often it's the patient vs the physician and the social worker."

Education is important, added Ms. Hartwell, who was not involved in this research, because "my experience is that many family members really don't know what's happening to the patient."

There is a difference between educating people and asking them for a kidney, said Linda Oakford, patient services coordinator for the RSN and a kidney recipient herself. "I get a lot of calls from patients [asking] how they can talk to people. I think this study says it all: 10 out of 10 donors showed up."

Dr. van den Dorpel, Ms. Hartwell, and Ms. Oakford have disclosed no relevant financial relationships.

Renal Week 2009: American Society of Nephrology (ASN) 2009 Annual Meeting: Poster TH-PO1025. Presented October 29, 2009.