Home Dialysis, Home Dialysis Central, and
What YOU Can Do Today
Dori Schatell


Each year’s new USRDS Annual Data Report adds a point to the dialysis treatment trends, and additional evidence that—as a community—we are heading in the wrong direction.  Each year, fewer new patients do peritoneal dialysis (PD) or home hemodialysis.  In 2002, a quick calculation of incident patients (USRDS, 2004 ADR, Table D.1) finds that 92.4% were on in-center hemodialysis. A decade earlier, that figure was 83.9%; 10 years before that It was 82.7%.  So, even as the population of American patients with kidney failure is exploding, the proportion who are caring for themselves at home is plummeting.
 
Yet self-care and self-management are associated with profound and life-altering benefits for patients with ESRD. Life Options research conducted by the non-profit Medical Education Institute (MEI) has found that long-term (15 years+) survivors on hemodialysis want to live, believe they are valuable, like to feel in control—and know that they are still the same people, despite kidney failure. And, they self-manage their disease:  they consult with their care teams, but they run the show—and this helps them live longer.  Elements of self-management are linked with higher functioning and well-being, which in turn predicts lower hospitalization and lower mortality. At the MEI, we view any home dialysis therapy as the “upper end of the self-management continuum.”
 
Home dialysis offers economic benefits to dialysis providers and patients:  lower costs of care—or higher costs offset by lower hospitalization (a dynamic that is unfortunately not recognized in our current reimbursement system of paying for dialysis under Medicare Part B and hospitalization under Part A). Too, the median age of incident dialysis patients is 65: nearly half are working-age—and working patients who choose PD or transplant are significantly more likely to keep their jobs and their employer group health plans.
 
Finally, we know that there is a nationwide nursing shortage. One home training nurse can provide direct, empowering support to perhaps twice as many patients as he or she could provide via indirect care by technicians to in-center hemodialysis patients—and, at the end of the day, which task will help reduce turnover and improve job satisfaction?  Which job description might even attract new nursing graduates to nephrology?

About Home Dialysis Central
Like ANNA, the MEI is passionately concerned with reversing the national trend and encouraging an increase in all forms of home dialysis. One step we have taken is to create Home Dialysis Central (www.homedialysis.org), a web-based clearinghouse of patient and professional information and support for all five types of home dialysis: CAPD, CCPD, conventional home hemodialysis, daily home hemodialysis, and nocturnal home hemodialysis. On Home Dialysis Central, you’ll find:

• Downloadable, illustrated, patient-friendly descriptions of the five types of home dialysis—and the buttonhole technique for fistula cannulation.
• A “catalog” of available PD and home hemodialysis machines.
• An up-to-date, searchable database of every center in the U.S. that offers home dialysis.
• Message boards where professionals or patients can share techniques and find answers.
• Stories of patients who are successfully doing home dialysis.
• A Legislative Action Center to track progress of home dialysis-related bills and offer support.
• A full array of links and resources, including bibliographies and slide presentations.
• “Ins and outs” of Medicare reimbursement.

What YOU Can Do to Support Home Therapies

Using Home Dialysis Central as a communication tool, there are 10 things you can do today to help drive growth in home therapies, and support patients in their efforts to self-manage their care:

1. Join (it’s free). Click the “Join Home Dialysis Central” button, complete the form—and you’ll be on our list for monthly email updates and in the loop for what’s new in home dialysis. Occasionally, we’ll send out Action Alerts if a pending bill needs sponsors or calls, and we need your help. Joining helps us to build a coalition.
2. Talk. Post to the professional PD or HD message boards to pose questions, describe your CQI effort or how you solved a tricky problem, point people to shareable resources, or alert visitors to home dialysis news.
3. Educate.  Download the modality descriptions, comparison chart (see Figure 1), or other tools and print them to share with your colleagues or patients.
4. Verify.  Look up your clinic in the “Find a Center” database and check the information for accuracy. Let us know if we need to correct your listing.
5. Locate. Need a PD clinic in Boise?  Seeking nocturnal home hemodialysis in New York? If you or your patients want home options, find them here. No home dialysis clinic nearby? Advocate with your medical director to start a program of your own.
6. Clarify. Medicare is complex. Check our FAQs for answers to commonly-asked questions about reimbursement for home training, home equipment, and home treatment. 
7. Teach. Write to us. Share a resource, link, new abstract, news story, or tip.
8. Advocate. Send a letter to your legislator or your local news station or newspaper about how important home dialysis is, through the Legislative Action Center.
9. Sponsor. Contribute on-line, encourage your home dialysis clinic to upgrade to a Sponsored Center Listing in the database, urge your company to offer or increase corporate support. Sponsorship allows us to seek out patient stories, track legislation, maintain the database, purchase Google search terms, print free postcards, and more.
10. Share. Order free, full-color Home Dialysis Central postcards and give them out to your colleagues and patients.