During National Kidney Month: A Plea for Data
In the nephrology community, we often observe that people with kidney disease “Don’t know what they don’t know.” This is true, of course. We cannot expect that people just diagnosed with a chronic illness know anything at all, let alone all they need to do to self-manage effectively—nor do we tend to teach them. (Try Kidney School for that.) But, March is National Kidney Month, and the reality is, we, as a community, don’t know what WE don’t know, either. Despite a raft of studies (just for kicks, I put “kidney disease” into PubMed and found that in just the past 12 months, there have been 14,373 papers from around the world), and even an Annual Data Report (ADR) from the United States Renal Data System (USRDS), gaps remain. We gather reams of clinical data—and very little else. Yet, a study commissioned by the Kaiser Family Foundation found that just 10% of health outcomes are attributable to healthcare, while 40% are due to individual behavior, and 20% to environmental and social factors. And, we know so little about either of these in people with chronic kidney disease (CKD).
How much education do people with kidney disease have? This is a critical metric—we need to know our audience to be able to reach them in ways that will really help. We know that health literacy (the ability to understand and act on information) is an issue. We have zip code information about where people live. And, a number of studies have found that kidney patient education materials are most-often not written at a grade level where most people could be expected to understand them. But, the USRDS does not report data on education level—because CMS does not collect it. Adding one field on the CMS-2728 form for “Years of school completed” would be invaluable as a start, although we still need to know this information for people with non-dialysis kidney disease as well. For that matter, it would also help to know:
What language do patients speak at home? Can they read in English? If not, we need to reach out in the language they do understand.
How much income do they have? Income can determine access to healthcare, housing, transportation, and other resources.
Do they have support at home? Some patients are blessed with a large support system. The ones who are not need extra help to cope with CKD and ESRD.
What matters to them—what are their goals and passions? We cannot help people keep what is most important to them if we don’t know what it is!
How many people on dialysis are able to keep working if they were working before they started treatment? Work confers self-esteem, socialization, income, and perhaps benefits, and it helps combat depression. I will never forget talking with Caroline—who gave me permission to share her story to help others, but I have still changed her name. An attorney and single mom of a disabled young adult son, Caroline had diabetes and hypertension. She was warned that her kidneys were at risk, but she was not given any hope that if they failed she could continue to work at a job she loved and care for her son, so she shut down. Still in denial, she ended up starting hemodialysis emergently—and her clinic told to quit her job and take COBRA (which her dialysis company would pay for. She ended up on disability and only found out about peritoneal dialysis by accident, when someone gave her our MATCH-D tool by mistake. The non-profit Medical Education Institute (MEI) is partnering with the American Association of Kidney Patients (AAKP) on KidneyWorks, an initiative to do outreach into non-dialysis CKD and provide resources to help people slow progression of their illness and keep their jobs. Due to advocacy under the Life Options program by my colleague Beth Witten, MSW, ACSW, LSCSW, the CMS-2728 form does collect data about employment status at dialysis initiation and 6 months prior—but after the start of dialysis, the data are spotty, and only recently have the ESRD Networks coordinated their efforts to ask the question in a consistent fashion.
How much does CKD cost? We have a reasonable sense of how much CKD costs Medicare (per the USRDS 2016 ADR, for Medicare non-ESRD CKD, $58B)—but Medicare beneficiaries are either over age 65 or already disabled. So, among the working-age audience that we seek for KidneyWorks, we know almost nothing. Getting a big-picture sense of the total costs of CKD—Medicare, Medicaid, Veteran’s Administration, Employer Group Health Plans, private insurance—could help alter the funding strategies for NIH and other agencies to put more emphasis on early detection and clinical and educational intervention to slow CKD progression and help people avoid kidney failure.
How long are in-center hemodialysis treatments?
We are finally starting to see an emphasis on the ultrafiltration rate during hemodialysis sessions, and MEI built a free UFR calculator to help patients and clinicians determine the parameters for a safe treatment that will not cause painful muscle cramps, organ stunning, and lengthy recovery times. But, despite the fact that we now know how deadly short, thrice-weekly treatments can be, particularly with the 2-day “killer gap” during which there is no renal replacement at all, we still do not routinely collect treatment time. DOPPS research found that virtually all other civilized nations offer people more hours of hemodialysis than we do in the U.S.—and they all have correspondingly less hospitalization and longer survival as well. Every dialysis provider knows how long patient treatments are. It should not be necessary to do costly research to have routine access to this information.
How may Americans with kidney failure are using daily hemodialysis? Nocturnal hemodialysis? The readily available home hemodialysis data are top-line only. While the CMS-2744 form collects data on numbers of patients who do daily hemodialysis more than four times per week, and both in-center and home nocturnal hemodialysis, these data are not reported in the USRDS ADR. For that matter, while the large dialysis providers and equipment manufacturers presumably also know the dropout rates from home therapies (let’s include peritoneal dialysis here as well), these data are also not publicly reported in any useful way. Not knowing this number precludes us from analyses of what works and does not work to help support people to stay at home once they overcome the hurdles to get there. And, home therapies are work-friendly, making it possible to fit both work and dialysis into the day—or preferably the night…
It is often—and correctly—said that knowledge is power. In the case of CKD and ESRD, more knowledge about what really matters to patients and about them, beyond the clinical, would give us more power to help people live better lives. These are just SOME of the data points we need, and there are certainly more. Please suggest them in the comments! We cannot get what we don’t ask for.