What if we could do more frequent dialysis? Would this improve QOL as potentially seen in the original FHN trial or even improve survival as seen in recent longer-term FHN follow-up?
What if we had more resources to support home dialysis? Would increasing nursing and other provider home visits and patient support make the promise of home therapy a reality for more patients?
What if we had more nurses, technicians, dieticians, or social workers in-center? Would you train them to lead intra-dialytic exercises? Give them skills in cognitive behavioral therapy? Teach patients how to eat better or how to cook? What about iPADs with educational or other productive resources for patients sitting idle in their chairs.
CJASN published an article this month calling for studies focusing on how to improve quality of life for our patients rather than debating which dialysis modality might extend life a few months/years longer. They reference an interesting qualitative study of interviews with over 30 Canadian patients, caregivers, and providers investigating potential research areas. The “top 10 research uncertainties” included items such as: enhancing communication between providers and patients; comparing dialysis modalities’ effects of QOL and mortality; addressing symptom (such as itching or fatigue) control and the psychosocial impact of ESRD; and addressing vascular access concerns. The focus on QOL by patients and their caregivers is notable and something that we should embrace.
Dialysis services in the US have an interesting, and it seems rare, quirk. 90% of patients are prescribed a therapy (in-center hemodialysis) that the vast majority of their doctors would not want for themselves. If you haven’t polled your colleagues yet you’ll likely discover they would favor PD or home hemo should they need dialysis themselves. This is a significant gap compared to our current reality.
So what would you do?
Robert Rope, Nephrology Fellow, Stanford
Instead of taking a medical intervention approach, I would take a system approach.
I would try to maximize the power of free-market profit incentives to deliver rapid progress and positive change on many fronts. I would create a strong, long-lasting, financial incentive to increase employment and rehabilitation rates for working-age patients. As a guide, I would use Scribner's statement, "If the treatment of chronic uremia cannot fully rehabilitate the patient, the treatment is inadequate."
These changes would (finally!) establish a well-patient model for dialysis care and would drive continual improvements in patient care, technology and infrastructure, as well as permanently integrate patient feedback into all care processes (all of which were routinely done in the 1960s).
P.S. We could do this today by extending the MSP-period for employed patients — at no cost to the government!