Improving outcomes for ESRD patients: shifting the quality paradigm

Abstract

The availability of life-saving dialysis therapy has been one of the great successes of medicine in the past four decades. Over this time period, despite treatment of hundreds of thousands of patients, the overall quality of life for patients with ESRD has not substantially improved. A narrow focus by clinicians and regulators on basic indicators of care, like dialysis adequacy and anemia, has consumed time and resources but not resulted in significantly improved survival; also, frequent hospitalizations and dissatisfaction with the care experience continue to be seen. A new quality paradigm is needed to help guide clinicians, providers, and regulators to ensure that patients' lives are improved by the technically complex and costly therapy that they are receiving. This paradigm can be envisioned as a quality pyramid: the foundation is the basic indicators (outstanding performance on these indicators is necessary but not sufficient to drive the primary outcomes). Overall, these basics are being well managed currently, but there remains an excessive focus on them, largely because of publically reported data and regulatory requirements. With a strong foundation, it is now time to focus on the more complex intermediate clinical outcomes-fluid management, infection control, diabetes management, medication management, and end-of-life care among others. Successfully addressing these intermediate outcomes will drive improvements in the primary outcomes, better survival, fewer hospitalizations, better patient experience with the treatment, and ultimately, improved quality of life. By articulating this view of quality in the ESRD program (pushing up the quality pyramid), the discussion about quality is reframed, and also, clinicians can better target their facilities in the direction of regulatory oversight and requirements about quality. Clinicians owe it to their patients, as the ESRD program celebrates its 40th anniversary, to rekindle the aspirations of the creators of the program, whose primary goal was to improve the lives of the patients afflicted with this devastating condition.

Figure 1.

The patient-focused quality hierarchy (the “quality pyramid”). The individual boxes are examples within the key layers that form the pyramid and are not meant to encompass all possible items within a layer. What Matters Most–outcomes that improve patients' health related quality of life; Measures of Effectiveness–primary outcomes driven by lower complex programs and fundamental clinical areas of focus; Complex Programs-comprehensive and multi-faceted clinical programs driven by fundamental clinical areas of focus and closely linked to highest-order outcomes; The Fundamentals–basic clinical information focusing largely on biochemical and surrogate data. AVF, arteriovenous fistula; CVD, cardiovascular disease; CVC, central venous catheter; EOL, end of life; HRQOL, health related quality of life; MBD, mineral and bone disorder; Med, medical; mgmt, management; Pt., patient; PTH, parathyroid hormone; tx, treatment; URR, urea reduction ratio.