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The American Association of Kidney Patients (AAKP) will be holding its 38th annual meeting this week in Little Rock, AK. Being a Board member I have the privilege of attending this year’s national meeting and pre-meeting sessions. Prior to the start of the pre-meeting sessions, however, I had an interesting conversation with a fellow board member whom I hadn’t met before.
The ride from the Little Rock airport to the hotel/convention center was only 20 minutes, but I learned quite a lot from my fellow board member. He is a kidney transplant recipient, but never really had the need to learn about kidney disease until it was too late. He recalled the events that led to his eventual diagnosis with severe kidney failure, and how both he and his primary care physician were both shocked at this finding. He recounted how much he had to learn about kidney disease, dialysis, dialysis access, and transplantation in such a short period of time. And then came a very interesting point: if only patients and primary care physicians could detect kidney disease earlier, one could avoid the educational “crash course” in dialysis and renal replacement therapies.
I thought about this for some time. For years (if not decades) nephrologists have been advocating “early nephrology referral”. Plenty of scientific data exist to show that patients have better outcomes (e.g., delayed progression of kidney disease) when referred to a nephrologist early. Now in full disclosure, I wasn’t a member of the nephrology community when “early nephrology referral” was strongly advocated. What I’ve realized, though, is that “early nephrology referral” seems to be misinterpreted by many non-nephrology providers as “let’s not learn about kidney disease because we have to send the patient to a nephrologist anyway”. While this may have been all well and good “back in the day”, today’s nephrologist is faced with an exponential growth in patients, lowered reimbursements than ever before (i.e., “the bundle”), and the recent news that the number of medical school graduates entering nephrology is decreasing (CJASN June 2011). In other words: lower pay for more work and not enough help coming down the line. As a result, I can only wonder if someone other than the nephrologist should take on the duty of early kidney disease detection and education about hypertension, diabetes, and kidney disease. Perhaps the primary care physician could fill this role, but I’m sure that they too are overworked, underpaid, and don’t have enough help coming down the line (too many citations to list here). So I wonder if the each patient should take an even greater role in learning about kidney disease. Should we delegate the responsibility of learning the “basics” of kidney disease to the patient, and reserve the physician for more expert advice only after one knows the fundamentals of kidney disease? Surprisingly, my fellow board member thought we should.
The bus ride was too short for I to get into more details about what my fellow board member expected patients should understand and learn on their own. I got the feeling that if he had even the slightest idea that he was at risk for (or was suffering from) kidney disease, he would have consumed as much information as he could. Perhaps nephrologists will have to delegate some of the “preparatory” education to others, including patients, in order to focus more sharply on the complicated management of kidney disease. Are we as 21st century nephrologists willing to concede that we need a significant amount of help from the patients themselves to combat kidney disease?
I think I know why my new friend thinks; what about you?
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