Patients want what nephrologists would seek: the best dialysis care

INDIANAPOLIS–Dialysis can take a toll on your well-being. Three times a week, 3-4 hours a treatment, doesn't do a good job of replacing natural kidney function. You can feel the effects of fluid overload between treatments, and experience the exhaustion after each treatment.

But not this group of dialysis patients.

They sat at a table in a conference room at the convention center here, part of the two-day program at the Indiana University Health’s 6^th annual home dialysis symposium. The theme this year, “Building a Comprehensive Home Dialysis Program — The Road Home” centered around helping nephrologists and dialysis clinic managers develop or build home dialysis programs: patient selection, nutrition, economics, and just as important, patient experiences.

The IU home dialysis program, directed by nephrologist Michael Kraus, is the largest in the state and one of the leading programs in the country, with 53 peritoneal dialysis patients and 64 home hemodialysis patients.

Each year, Kraus includes a patient panel as part of the symposium. Sharon Bradley, Jarvis Burts, Victor Ruto, and Velva Vasquez were this year’s volunteers, detailing their journey through kidney disease and their decision to go home. Velva is on peritoneal dialysis; Sharon on nocturnal hemodialysis, and Victor and Jarvis on short daily hemodialysis.

What’s it like to do home dialysis?

Every educational conference for medical professionals should include viewpoints from those receiving the care being delivered. It shouldn’t be a gripe session; it’s all about learning what life is about beyond just the illness—the impact on family life, the changes in career goals, the dealings with the baggage that comes with a chronic illness. It can be a life-changer; caregivers can learn from that. It’s not just about a diagnosis and administering the treatment.

Yet listening to Sharon, Jarvis, Victor, and Velva suggested that, while life on dialysis has not always been a bed of roses, they have extracted the most they can out of their therapy to help lead a normal life.

Denise Eilers, a caregiver to her late husband while he was on home hemodialysis, moderated the session, fielding questions from the audience: “How is life different on dialysis?” “Tell us what you can’t do that you did before kidney disease took hold?”

What about burnout? The needle sticks?

They didn’t have a lot to say. When asked about the down time and feelings of fatigue after dialysis, a quizzed look appeared on their faces. “What’s that,” said Sharon.

Could dialysis be this good?

Staff attitude towards home dialysis makes a difference

What they did say was that they wouldn’t have succeeded at home without their nurses at IU. “We love our nurses” was the chorus, and “Dr. Kraus helped me believe that I could do this.” Sharon and Jarvis, who had experience in-center dialysis care, would not go back. “I can do dialysis on my schedule, I can do it in my own home, I can do it while I sleep…I can stick myself and not be reliant on someone who can’t,” was what they said collectively. Ultimately, self-care, even with the trappings of dealing with a complicated medical procedure like dialysis, was far better than being in a center that made them feel old and sick.

Outcomes data on home dialysis still inconsistent

Most patients and renal professionals would agree that more dialysis is better. But studies continue to look at trying to specifically define the benefits. The NIH-funded Frequent Hemodialysis Network study fell short of participants and was underpowered. While overall results were good, a new study released last month by Rocco et al. said that patients who were assigned to the nocturnal arm of the FHN trial had a higher mortality rate than patients getting conventional thrice-weekly dialysis in the trial.

But the low numbers make it difficult to draw conclusions, the authors acknowledged. “In sum, our findings should not be interpreted as demonstrating an adverse effect of frequent nocturnal dialysis on mortality, but they appear to indicate that it is unlikely that frequent nocturnal dialysis substantially reduces mortality for the patient population that was represented in this trial.” The authors also acknowledged that the 3% mortality rate was atypical for in-center hemodialysis patient control group.

Said Meg Jardine, MBBS, PhD, and Vlado Perkovic, MBBS, PhD, in an editorial reviewing the conclusions of the paper, “Although results (in comparing mortality in the nocturnal group vs. the conventional group) were statistically significant, the number of participants was small and the absolute difference in number of deaths was only 9…with a small shift in the number of deaths, the results could lose significance, highlighting the study’s relative fragility.

“This supports the cautious interpretation by the authors, who suggest that the finding should be taken as an absence of benefit rather than evidence of harm” in placing patients on nocturnal dialysis.

Another study by Marshall et al. looked at survival data among all ESRD patients in Australia and New Zealand and showed that while outcomes for all patients on dialysis therapy were improving, the results were even stronger for those on home dialysis, particularly home hemodialysis. “This might be the result of better dialysis care (e.g., improving predialysis care and more appropriate selection of patients for home dialysis),” the authors wrote.

All dialysis patients need options

Stories like Sharon, Jarvis, Victor, and Velva suggest that there are many more than the 10-12% of patients now who are dialyzing at home that could benefit. Why can’t dialyzing at home be the default therapy for individual with kidney disease? Ask them early – in stage 3-4, to think about home as a bridge to transplant—where most people want to end up. Show them the advantages.

If you are a nephrologist or nurse and you aren’t comfortable recommending home therapy, find someone who is. Everyone deserves the opportunity and the kind of life on dialysis, if they choose it, that Sharon, Jarvis, Victor and Velva have with kidney disease. -by Mark Neumann