eAJKD: Please tell us what prompted you to conduct this investigation? What did you know entering the study and what questions were you trying to answer?

RS: Chronic kidney disease (CKD) has emerged as a major public health problem in the United States. CKD affects 10-15% of the population within the US, and in many cases, its progression to end-stage renal disease (ESRD) and complications are preventable. Nevertheless, these consequences continue to lead to early death, disability, and poor quality of life.

A systematic and comprehensive CKD Surveillance System dedicated to earlier stages of CKD was considered fundamental toward development of strategies to prevent progression of this disease and significantly reduces its devastating health consequences such as ESRD. Following a congressional directive and as part of its larger CKD Initiative, the US Centers for Disease Control and Prevention (CDC) funded two teams (the University of Michigan and the University of California in San Francisco) to jointly develop and implement a national CKD Surveillance System. The CKD Surveillance System website will be the primary channel for disseminating results from this surveillance system. The website will provide its audience, including caregivers, health officials, media, and the general public, with interactive tools to track CKD and its associated issues, such as burden of disease, awareness, risk factors, health consequences, processes of care, and health system capacity at both regional and national level. The main purpose of this publicly available website will be to provide data and trends for the US, focusing on areas and populations where the need is greatest.

eAJKD: From your perspective, what were the key findings of your investigation? Particularly, in what way did the data and subsequent analysis surprise you and your team?

RS: The CKD Surveillance System currently addresses six topics to capture major facets of the disease:

1. Burden of CKD, including prevalence and incidence

2. Awareness of CKD

3. Risk factors for CKD

4. Health consequences of CKD

5. Processes and quality of care in patients with CKD

6. Health system capacity for CKD

Thus far, we have focused on examining national datasets for many of the above listed domains, eg, National Health and Nutrition Examination Survey (NHANES), data from the National Veterans Affairs, and Medicare (5% random sample). We are also exploring data from regional as well as national managed care plans, as well as state or health system based CKD surveillance efforts for regional data that will allow public health agencies to prioritize their action plan where most needed.

We have found that population based surveys such as NHANES can yield valid estimates of disease prevalence, as well as information regarding risk factors for disease. We are also continually exploring the utility of healthcare system data to estimate population-based CKD prevalence, an approach that could mature and become more pertinent over time. Analysis of healthcare data has provided a window into national and regional practice patterns as well as long-term patient health outcomes and resource utilization. In addition, the surveillance system is utilizing data from cohort studies and other relevant survey data to gather information regarding important aspects of CKD. These could be information such as progression of CKD, the extent of eGFR reporting nationwide, or the number of trained nephrologists in the country.

eAJKD: How can we incorporate the findings of your study into our clinical practice?

RS: Multiple national and international entities provide care guidelines for patients with late-stage and early-stage CKD, in addition to patients with risk factors for developing CKD. By assembling these guidelines alongside available data and trends, and making our results publicly available in a timely fashion, we aim to both increase awareness of CKD and highlight practice areas that can be targeted for improving patient health.

Ideally, as the scientific literature points toward better care practices or additional disease risk-factors, we would like the CKD Surveillance System to be able to quickly integrate this information and provide information about the adoption and potential impact and trends related to these advances. More details on this program can be obtained from the CDC’s National Chronic Kidney Disease Fact Sheet.

eAJKD: Where do you and your research team go from here? What are the questions that you’ll be investigating next?

RS: The US CDC‘s CKD Surveillance System is among the first of its kind entirely dedicated to earlier stages of CKD in the world. CKD remains an under-recognized disease despite its association with other common chronic diseases and its role as a risk and cost multiplier. Therefore, it is imperative that greater resources be made available to raise awareness, stimulate discussion, and change practices and policy related to earlier stages of CKD, in addition to continuing the historical emphasis on ESRD. It is our view that the CDC’s CKD Surveillance System will be seen as a right first step in this direction, and has the potential to stimulate vigorous nationwide primary and secondary prevention efforts related to this condition. Through a collaborative framework, integration with other chronic disease surveillance systems and a multifaceted dissemination strategy, we expect to stimulate public interest and action, build national and international partnerships, and impact public policy in order to prevent as well as substantially reduce the adverse consequences of this disease.

Check out a SCM12 video interview from National Kidney Foundation about the CKD Surveillance System.