60% of kidney disease patients think transplantation is a 'last-resort'

[okarol]

11/2/2009

Survey shows 60% of kidney disease patients think transplantation is a 'last-resort'

Research, published in the November issue of the American Journal of Nursing found that 60% of non-transplanted patients with kidney disease perceive transplantation as a “last-resort” option. This is despite the fact that those who receive kidney transplants before starting dialysis have lower rates of morbidity and mortality than those who undergo transplantation after dialysis. In 2005, fewer than 2.5 percent of patients in the United States with end-stage kidney disease underwent transplantation as initial therapy.1

“The survey found that emotional barriers or gaps in education are the two major factors behind the misperception that dialysis must precede transplantation,” said Genevieve Coorey, MA, BSN, RN, quality assurance and program director at the National Kidney Foundation. “Patients need to be taught that avoiding even a year of chronic dialysis can significantly improve health outcomes.” Coorey noted that transplantation can also decrease Medicare expenditure by about $58,000 (34 percent) per patient over the first two years of kidney replacement therapy.

In 2007 the National Kidney Foundation surveyed 3,586 patients randomly selected from its database. The 28-question survey focused on socioeconomic factors, perceptions, fears and concerns about living donor transplantation and barriers to learning about transplant as a treatment option.

Results indicated that those who received transplants before starting dialysis had higher incomes and more education. They were also more likely to be white and to have learned about treatment options from a physician. Barriers to early transplantation among patients with progressive kidney disease include the lack of a timely referral by a health professional and the fact that patients are not always informed that transplantation has better outcomes when pursued early. There are also financial considerations and potential psychosocial barriers, such as anxiety and misunderstanding about the process, along with reservations about finding and approaching a potential living donor.

“As the author points out, this survey indicates that both real and perceived barriers to early transplantation persist,” said Diana J. Mason, RN, PhD, FAAN, editor-in-chief emeritus of AJN. “The responses reveal how vital the nurse’s role is for reinforcing the importance of timely education, problem solving, advocacy and facilitating patient-physician communication if early transplantation is to become a reality.”

http://www.nephronline.com/news.asp?N_ID=3283

[okarol]

I came across this article again and it still is confusing to me. They make it sound like patients have a choice about dialysis or transplant. Most of the time we are told to get evaluated and listed when dialysis BEGINS. I know of people who have been evaluated, approved and even gotten a deceased donor kidney BEFORE ever starting dialysis, but it's rare, in my experience.

[MooseMom]

Pre-emptive transplantation is the ideal; that is what I was hoping to do and that is what my transplant team would like.  However, we don't have a say in how quickly our renal function declines, and many of us don't have a living donor.  After 19 years of a modicum of stability, my eGFR suddenly and rapidly declined, and I will probably end up on dialysis before I am cleared for the waiting list.

[okarol]

My understanding is that you can be evaluated and approved for the wait list, yet be inactive, and accrue wait time prior to beginning dialysis.

[Wenchie58]

I am one of those lucky ones...and I do feel that way, even with kidney disease.  I was evaluated, tested and received a deceased donor kidney all before dialysis.  I 'thought' I was lucky, after joining this site and hearing from soooo many others who are waiting patiently (or not so patiently) for their miracle...I KNOW I am lucky.

So yes, you can be listed...and active on the list...prior to dialysis.