As nephrologists know, the decline in kidney function is almost always a “silent disease,” and even patients who experience fatigue and low energy often attribute these symptoms to “getting old,” rather than as signs of illness.
When I practiced nephrology at Vanderbilt Medical Center, I was always surprised at the number of patients who presented to the chronic kidney disease clinic with comments such as, “I didn’t know I had kidney disease” or “I am still able to urinate, so why is my primary care physician referring me to a kidney disease clinic?”
These types of comments point to specific areas of needed improvement in kidney care, namely the need for earlier, proactive education of patients with CKD to encourage a greater awareness of the disease among these patients and the provision of evidence-based care to slow down progression of CKD. It is also important to educate them on their treatment options and optimize the care they may be receiving as patients with end-stage kidney disease.
Data from the 2020 Annual Data Report from the United States Renal Data System confirm that, of patients initiating dialysis for ESKD, more than 80% “crash” into dialysis during a hospital admission and end up initiating dialysis with a central venous catheter and all its acute and chronic complications, including high risk of infection and hospitalization.
Prior nephrology care
Even patients who have been followed by a nephrologist prior to ESKD often do not know all their treatment options, such as transplantation, home dialysis and, importantly, conservative care as an alternative to in-center dialysis.
These “crashes” into in-center dialysis not only impact the patient’s health adversely, resulting in multiple hospitalization episodes and high mortality, but also result in high cost of care, whether the patient has private insurance, Medicare or Medicaid.
Rather than “crashing“ into dialysis, patients with kidney disease should be empowered with knowledge and educated on ways they can slow down progression of their disease, learn about their treatment options if and when they progress to ESKD and help them prepare for whatever option they choose.
Alternative care models
A couple of years ago. I received a call from U.S. Senator Bill Frist, MD, who was my colleague when he worked at Vanderbilt as a heart transplant surgeon. We discussed this lack of knowledge among patients about their kidney disease, lack of awareness of non-dialytic or dialytic treatment options and lack of planning for evidence-based ESKD treatment pathways.
After a few meetings, he asked me to join a startup kidney care company, Monogram Health, that he founded. We shared the vision of raising awareness and knowledge of kidney disease in as many patients with CKD as possible and working with the nephrology community to raise the quality of care and patient satisfaction for patients with CKD and ESKD, resulting in better patient outcomes and cost efficiency in this expensive segment of health care.
Our model of care is simple: engage and talk with patients where they are most comfortable and relaxed – at home. We have done our in-home visits, using appropriate protections, even during the COVID-19 pandemic, because most patients prefer face-to-face interactions with medical personnel.
Our interactions and educational program for patients follow three broad pathways that are complementary.
CKDelay focuses on patients with eGFR from 40 mL/min/1.73 m2 to less than 20 mL/min/1.73 m2.
ACT! is our advanced care transition program which focuses on educating patients with eGFR of less than 20 mL/min/1.73 m2 but who have not yet made an informed decision for their ESKD treatment options, including conservative kidney care, transplant or dialysis.
ECO or the ESKD care-optimization program is aimed at patients with eGFR less than 15 mL/min/1.73 m2 who have or have begun to experience kidney failure and for whom compliance with the right evidence-based treatment plan is critical.
CKDelay educates patients about lifestyle changes that can slow down progression of their illness, such as the following:
compliance with prescribed medication;
avoidance of OTC nephrotoxic medications;
diets that are rich in vegetables and fruits and low in sodium and protein; and
monitoring and recording their BP daily and if they have diabetes, monitor and record their blood sugar at least a few times daily to help their physician adjust their diabetes medication accordingly.
If the patient’s eGFR is 20 mL/min/ 1.73 m2 or less, in addition to the CKDelay education, the discussion focuses on their therapeutic options if and when they reach kidney failure.
The therapeutic options discussed are inclusive and consist of dialysis (with emphasis on home dialysis, transplantation preferably from a living related donor, which is an option that is also discussed with the patient’s next of kin) or conservative therapy for patients who are at an older age (> 75 years) or have multiple comorbidities that may significantly reduce their well-being and the quality of their lifestyle if they are initiated on dialysis.
Timely access placement
For those patients who elect dialysis as a modality choice, we discuss with them the need to prepare and initiate a timely access placement (AV fistula for those who elect hemodialysis and a PD catheter for those who elect the PD option), with emphasis on early placement of an AV fistula because they often require surgical revisions before the fistula matures and because placement of AV fistulas has been associated with improvement in eGFR.
For patients in our ECO program – those who have experienced kidney failure – we ensure they comply with an evidence-based pathway, be it conservative kidney care, transplant or post-transplant care. For those already on in-center dialysis, we emphasize the need for treatment compliance (and help with transportation issues if needed) and again, discuss the advantages of home dialysis if clinically appropriate.
This strong emphasis on home-based dialytic therapies has been reinforced by my colleague, Shaminder Gupta, MD, currently the medical director of Monogram Health, whose work was recently highlighted in an article in this publication.
Multidisciplinary care team
While most of these discussions with patients are performed by experienced nurses in the locality where patients live, social workers who can provide the patient with emotional support, particularly those with evident depression or denial of their health status and, for those who need it, help with transportation to medical entities or help them apply for external financial support.
When appropriate, patients with CKD (eGFR <30 mL/min/1.73 m2) who are not followed by a nephrologist are referred to the nephrology practice engaged with Monogram Health, to receive their nephrology-specific care. Monogram Health does not have a financial relationship related to the provision of dialysis. Monogram Health neither owns any dialysis facility nor benefits from any dialysis referral.
Our model of care is simple. Equally important, it is effective. We have been able to engage with more than 70% of patients referred or identified by a health plan as having CKD and doubled the rate (to more than 40%) of patients who initiate planned dialysis, with 28% initiating home dialysis (two to three times higher than the national average), resulting in a significant decline in hospitalizations and re-hospitalizations.
More than 20% of patients choose conservative therapy after they (and their next of kin) are educated on the risks and benefits of dialysis as a therapeutic option.
With all these positive patient outcomes, our “at-risk” payment model is performing well, confirming the principle of “doing well by doing good.”
Raymond Hakim, MD, PhD, is an adjunct clinical professor at Vanderbilt University School of Medicine and chief medical officer for Monogram Health.