By Bill Peckham
The afternoon session begins
John Agar, MBBS and Debbie Brouwer, RN, Presiding
1:30 - 3:30pm
1:30 Robert Provenzano, MD, Administrative/Political/Advocacy Challenges
We don't understand the politics. The opening of Dickens' Tale of Two cities could be written today about the provision of dialysis "It was (is) the best of times, it was (is) the worst of times". For politicians the issues are Costs! Costs! Costs! and maybe Accountability and Quality. Is the provision of dialysis facing a perfect storm? - bundling, healthcare reform, Medicare insolvency.
Paying for dialysis gets you more dialysis patients, "paying to keep people off dialysis (in early stages of CKD) will get you more people off dialysis" (I don't know. Better CKD care may get you more people using dialysis who are generally sicker and older).
Provenzano, speaking rapidly, goes over the DC lay of the land - the changes that have happened and the changes that may happen. Against the gearing up of the CKD advocacy community. The CKD community has had some success since organizing at about the turn of the century.
Extended DRGs ... briefly touched on - "we can not continue to ask and ask and ask."
2:00 Mary Dooley, MSW, Role of the Social Worker
The role of the Social Worker is different from the rest of the team. Provides the NKC approach to evaluate potential HHD patients - people transitioning from incenter might not be use to making their own care decisions, and may not even realize their own level of learned dependency. The home visit is a critically important tool to get to know the patient.
The Social Worker might need to focus on different things for those going home - support strengths but relationship counseling may be necessarily. Having people revert back to incenter is damaging to all involved, being direct and clear eyed along the whole journey is required.
2:15 Karen Wiesen, MS, RD, Dietitian in Home HD Therapy
The Dietitian is more than the food police, need to recognize the different dietary needs between the modalities. Include the dietitian in the care plan and in developing materials in addition to nutrition assessment, nutrition counseling.
Understand that there will be dietary changes over time. Communication s key.
2:30 Dori Schatell, MS Supporting Home HD Couples: How Can We Help?
Someone has a lot to do - the care partner operates on a continuum, from doing everything to doing very little. The perceived burden of HHD is greater than the perceived burden of conventional HD but that isn't a complete picture, it minimizes much of the conventional burden.
MEI has data showing the couples fall into three groups: those that thrive, those that are surviving, and those that are in a martyrdom based relationship. The goal is for all to thrive. One factor that helps is for the person needing dialysis to do a large share of the work.
Tips to succeed: Set clear expectations. train for retention, communicate, consider employment impacts (evening training?), phone support and post training support.
3:00 Beth Witten, MSW, Fulfilling the Promise: Helping Home Dialysis Patients Work
When the Medicare entitlement came into effect the expectation was that 60% of those using dialysis would be able to go back to work.We don't have good data - the form relies on staff to fill out as a result the USRDS reports that about 10% of patients aged 0 to 4 are working while others in that age group are listed as retired, while others are identified as being on medical leave.
Also the USRDS does not breakout the number of people on HHD working - the data is not broken down by modality to include HHD because the numbers are seen as being too small. Patients that are working full time make good patients.
How to get patients to work: high quality care, promote physical activity, support home treatment and transplant options. Expect that patients can work, expect people who are in school to say in school - expectations are important. Link new patients with patients that are active and working, assess and treat depression, do not feed the learned dependency dynamic. Try to schedule home training around work schedules. Fiscus vs Walmart established that using dialysis means the ADA covers your employment - you can ask for accommodation.
Sheila Doss, RN, Robin Eady, MSc, Presiding
3:45 - 5:30pm
3:45 Panelists: Lisa Koester, MSN, RN, Joan Leake-Nardeo, RN, Robert Lockridge, MD Preventing Dropout: Best Practices
3:50 Koester: It's important to be very honest and realistic. Don't over sell. Look for signs of burnout - nip it in the bud. Respite care might remind people why they didn't like incneter and allow them to recommit to home. As a provider be flexible allow a mixed short/nocturnal schedule, 5 days aweek, two days on one day off.
4:00 Leake-Nardeo: I've never had a drop out because I invest time in screening (but does that mean that some people who cold have succeeded weren't given a chance?). Train the patient instead of relying on the care partner. Teach people to take care of their own access.
4:15 Lockridge: There is a burden vs. benefit analysis that people make to decide to stay with their choice of therapy. More dialysis reduces the burden. The most important selection factor is desire/motivation. Top barriers are cannulation and the machine/safety. 60% of my people use catheters (!) catheters are a bridge to home and eventual self cannulation.
4:25 Questions some push back on Leake-Nardeo's 100% success rate. Berkowitz touts mentoring - the importance of peer to peer mentoring. Schatell reminds everyone that the HDC MatchD tool for identifying good candidates for HHD.
4:35 Robert Pauly, MD, Survival: Short Daily vs. Longer Dialysis
Has a great slide illustrating the relationship between all the complimentary modalities. Good data comparing the historic experience in Tassin over time as people who transitioned to dialysis had more comorbidities.
Standard Mortality Rate: give a close look at how it is calculated - it is only adjusted for age sex race and underlying renal disease. Missing are comorbidities, vintage, population expectations (example: people in France general mortality expectation vs. US).
Close look at Kjellstrand's paper comparing short daily with cadaveric transplant. Doing the SDHD at home was protective, even stronger outcome. Reinforces the point that since both transplant and home dialysis populations are highly selected it suggests that it is fair to say that the SDHD rivals cadaveric transplant. Morality rates were 14.7 for NHD; DTX14.3; LTX 8.5 after 10 years.
Limitations Population comparisons vs. Patient level comparisons; there is not a random assignment likely to be non random confounders that we don't know about. Residual confounding could be misleading. Literature is fraught with selection biases but that is true on both sides but it should be noted that intensively dialyzed individuals may be very ill and the therapy is being used as a salvage therapy. Not clear in sum which group is most favored by biases. Information biases due to retrospective analysis. Small sample sizes on all sides. Short follow up, relatively, on all sides. Hard to make comparisons among different health systems.
Results are not definitive but promising. There is a consistent signal but more data is needed. The data challenges the dogma of transplantation superiority.
4:45 Panelists: John Agar, MBBS, Christopher Blagg, MD, Lisa Koester, MSN, RN, Brent Miller, MD; Summary: Where Do We Go From Here?
Wrap up session of Q & A from audience. Berkowitz no to ESRD appellation. Next questioner, Charles George, shouldn't be CKD should be renal - CRD - inappropriate to use kidney as an adjective. Lockridge, pretending to be a newly minted fellow, asks what he should be telling his patients. After listening all day feel bewildered by the data. Hard for Blagg and Agar to pretend Lockridge is a newly minted doc (in the end you have to provide patients informed consent - which is what the veteran version of Lockridge said earlier).