“These numbers are extremely high and more needs to be done, not only in tertiary prevention, but in the areas of secondary and primary prevention as well,” says Julie Wright Nunes, MD, MPH, a nephrologist who treats patients with kidney disease at the Michigan Medicine Taubman Health Center, Northville Health Center, and VA Ann Arbor Healthcare System.
“Education, not just on CKD, but also on diabetes and hypertension, two main risk factors of CKD, provides prime opportunities to optimize messaging about CKD risks and potentially plays an instrumental role in lowering these risks.”
Dr. Wright Nunes has done extensive research on this subject. In addition to her clinical work, she conducts research that is focused on improving chronic kidney disease education and prevention efforts. She began with a focus on adults with CKD, however, she is now also working with others to get primary prevention programs in place for adolescents and teens, minority populations, and underserved populations.
About chronic kidney disease
Chronic kidney disease occurs when the kidneys are damaged and are no longer filtering extra water and wastes out of the blood the way they should be, and may continue to slowly progress in damage over time.
The main causes of kidney disease are diabetes and hypertension. Other risk factors include heart disease, obesity, older age, cystic diseases, inflammatory conditions, and a family history of CKD.
Two simple tests are available to detect if a kidney is damaged and to what degree.
There are five stages of CKD which reflect the extent of disease in the kidneys. Stage 1 is the earliest and indicates that there is mild kidney disease. In the early stages, kidney disease can be managed with diet, exercise, and medication to stay stable. Stage 5 means that the kidneys have a very low ability to filter toxins from the blood, and at this point, patients may start on dialysis or get a kidney transplant.
The most effective way to prevent CKD, like for many diseases, is a healthy diet and exercise, and keeping blood sugar and blood pressure at healthy goals.
The most frightening fact about CKD is that 9 in 10 adults with this disease in the early stages don’t even know they have it. One reason for this is that kidney disease rarely comes with any symptoms or warning signs in the beginning. Another reason is the low public awareness about kidney disease and its risk factors. These issues, along with others, make it difficult to diagnose CKD before it potentially progresses to later stages, where the patient would face many more health complications and possibly even progress to renal failure.
Prevention is key
“Preventing chronic kidney disease is ideally how we want to approach decreasing the number of people with CKD,” says Wright Nunes. “If we can educate people on what the kidneys do, why they are important, and what people can do to keep them as healthy as possible, I believe it can lead to behavior change that could decrease the number of people diagnosed with CKD and prevent progression in those with CKD.”
Early education and community outreach are two of Dr. Wright Nunes’ priorities, which is why she collaborates with Project Healthy Schools, to teach students about kidney disease, what causes it, what are the effects, and prevention.
Dr. Wright Nunes, along with another faculty member and the Nephrology Fellowship Program Director, Dr. Panduranga Rao, developed a 2-hour science curriculum that was incorporated directly into the science teachings at Cody High School in Detroit. Over 90% of the students said the education was important, should be continued in the future, and even shared what they learned with others outside of school. Dr. Wright Nunes and Dr. Rao participated in this program for 2 additional years, when the teachers decided to start teaching the program themselves.
“This decision reflected strong support and acceptance of this program to be beneficial and sustainable,” she says.
The Project Healthy Schools team and Drs. Wright Nunes and Rao are now continuing this work in middle schools and will evaluate for impact on student knowledge and self-reported behaviors.
She also presents at community events to educate the public about CKD and at conferences to share what research is available on the topic with providers and patients, most recently through the American Kidney Fund and Ann Arbor Public Library outreach programs.
Why is education so important?
While doing her fellowship at Vanderbilt University, Dr. Wright Nunes was a co-author of a study, featured in the New York Times, that looked at patients who were at various stages of chronic kidney disease. It was discovered that nearly a third of them didn’t know they had kidney disease. And if they did know they had the disease, many of them didn’t know much about it. This was in spite of the fact that they were under the care of nephrologists for years.
This gap in knowledge can be attributed to many factors in the patient-provider relationship. Patients may be at risk for not having the level of health literacy needed to engage and be as activated in care as needed, or may not comprehend the full implications of their disease. Health care providers are facing challenges such as not enough time or evidence-based resources to educate their patients in a way that is efficient and sustainable in real-world practice.
Improving health care provider education
In a study on provider perspectives on chronic kidney disease diagnosis delivery in which Dr. Wright Nunes led as a senior author, collaborating with former U-M fellow, Dr. Hannah Tiu, important variances were found in perspectives on educating patients in both primary care and nephrology, including the timing of diagnosis messaging and the language used to convey the diagnosis.
“This study,” says Wright Nunes, “highlights several opportunities to improve communication between provider and patient, and also indicates the importance of giving providers evidence-based and realistic to apply resources to help at the forefront of patient diagnosis delivery and education.”
In addition, she says that it’s important that CKD education continue to be strong in the primary care setting. Primary care providers are critical to the patient, and often the only major resource involved in managing and coordinating a patient’s care to address multiple comorbidities and complications. The primary care setting is ideal for having ongoing conversations about a patient’s disease, discussing management options, and tailoring the action plan as needed.
This is challenging, however, with increasing demands that primary care providers face every day with limited time and resources. Consequently, Wright Nunes notes that there must be a collective effort across the continuum of care to support the patient learning about CKD and the best possible care aligned with good outcomes.
Improving patient education
An important area of her research is identifying and developing tools to help facilitate and optimize patient-provider communication and improve quality in kidney disease care. Her latest research, with lead author and fellow Michigan Medicine nephrologist Dr. Karandeep Singh, reviewed and evaluated current phone apps aimed at supporting patients with kidney disease to determine their effectiveness. The study included CKD patients and nephrologists who rated the apps on quality, usability, and safety.
The study revealed that very few of the apps were rated highly by both patients and nephrologists. In addition, the ratings weren’t consistent between the two groups – where one group rated an app highly, the other did not. The study shows the necessity for organizations to get patient input while developing the apps to make them engaging and effective in helping patients manage their disease.
A continuous effort needs to be made to increase awareness of CKD and the seriousness of the disease, in both patients with CKD and the population as a whole.
“My goals are to continue to find ways to improve and expand kidney disease education and resources for both patients and health care providers, to increase patients’ access to care, to help support providers, and ultimately to advance the quality of care for patients with CKD,” says Wright Nunes.
To learn more about CKD, how to manage it, and steps you can take to prevent it, please visit the Michigan Medicine Chronic Kidney Disease website.