New Resource Empowers Patients with Diabetic Kidney Disease and Their Families

Karen Blum
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A new, free learning module from ASN's Diabetic Kidney Disease Collaborative (DKD-C) aims to empower people with DKD to learn more about their condition and become active participants in their care. Health care professionals are encouraged to share this resource, called “Your Kidneys and Your Health: Living with Diabetes,” with their patients to help them understand DKD and improve communication with their health care team.

The module has several sections, starting with a primer chapter called Kidney Disease 101, which explains how the kidneys work and what they do, how diabetes impacts the kidneys, and the stages of kidney diseases. Additional chapters are:

  • Engaging with Your Care Team, which covers questions patients can ask their clinicians, the importance of effective communication, and treatment options. It also features forms to download to track medical test results and medications.

  • Healthy Lifestyles in Diabetic Kidney Disease, which explains nutrition and diet management; the importance of protein, exercise, and medical nutrition therapy; and advice for parents of children who have diabetes.

  • Progress Towards Health Equity, which covers how unique life experiences and social determinants of health can impact the care patients need and receive and how they can talk to their physicians.

  • Diabetes, Blood Pressure, the Heart, and the Kidneys, which presents educational information about chronic kidney disease, diabetes and kidney damage, high blood pressure and diabetes, and the connection between heart disease and kidney diseases.

  • Patient/Pharmacy Assistance Information, which provides material about how pharmacists can help patients access financial assistance to afford their medications.

Upon completing the module, participants can print an attendance certificate and complete an evaluation.

This is the second module from the DKD-C, which in 2022, published an online course for clinicians on management of chronic kidney disease in people with diabetes, covering topics such as diet and exercise, racial and socioeconomic disparities, and treatments for diabetes and kidney diseases. After success with the first module, members of the collaborative wanted the information to be available to patients as well, so they adapted it into easily digestible information for laypeople and their families and caregivers, said Amy Mottl, MD, MPH, FASN, who is featured in the Kidney Disease 101 chapter and is an associate professor of medicine in the Division of Nephrology and Hypertension at the University of North Carolina School of Medicine in Chapel Hill.

“It was a joint venture between our patient advocates as well as other diabetes and chronic kidney disease experts from a whole multitude of specialties,” Mottl said. “It was really fun to get this information disseminated to patients so that they can benefit from the same information that is available to clinicians.”

During the planning, the group, led by patient advocate Patrick O. Gee Sr., PhD, JLC, founder of iAdvocate, Inc., in North Chesterfield, VA, decided to present much of the information through short videos thought to be relatable to patients and accessible to view on their mobile devices, said Susanne Nicholas, MD, PhD, MPH, FASN, tenured professor of medicine and a clinical hypertension specialist in the Division of Nephrology at the David Geffen School of Medicine at the University of California, Los Angeles. Many sessions feature Gee or other patient advocates interviewing experts.

“It made the information more easily accessible to patients because it's designed such that a physician specialist or pharmacist is in open discussion with a patient on a specific topic,” Nicholas said. “It allows the patient advocates to provide their perspective and describe their experiences related to an interaction with their physician or how the physician perceived them at the initial visit and the information they did or did not receive…. When they view these videos, I think patients will be able to identify with them and say, ‘Yes, that happened to me.’”

The module also offers recommendations for patients in the different topic areas, she continued: “There are specific questions provided for patients of what they can ask their physicians to make sure that the experience that they’re receiving and how they interact with their physician [are] really valuable for them.”

Individuals do not have to complete the course in order, Nicholas said. For example, if they had an upcoming doctor's appointment, they could go straight to the section on engaging with the care team and review questions to ask clinicians or a glossary of kidney-related medical terms.

We give them the verbiage of how to describe their kidney function, albuminuria, and things like that, so that when they go to their doctors they are really equipped and they have added knowledge,” Nicholas explained. “My hope would be that patients use this not only in terms of educating themselves about the different aspects of their care related to diabetic kidney disease, but they use it as a guide for how to speak with their physician or what questions to ask, what medications they should be on, and what type of lifestyle approaches they could use.”

Mottl, who has spent decades trying to better the knowledge base for patients with diabetes and chronic kidney disease, said participating in the project was personal for her. “With the increase in number of available treatments, I wanted to provide that knowledge base to patients in order to improve outcomes,” she said. “People have better diabetes control and somewhat better hypertension control. But we don't do a very good job, especially in the United States, in getting people on guideline-driven treatments. I wanted to expand the opportunity to provide these treatments to patients, and what better way to do that than to go to patients themselves?”

The collaborative plans to promote the module with an upcoming publication, Mottl said, and will update the sections as needed using participant feedback.

The DKD-C was launched by ASN in July 2019 in response to the development of new therapies for people with DKD. The collaborative works to increase coordination among primary care physicians, nephrologists, and other specialists to deliver appropriate therapies to people living with DKD. It also aims to provide educational information to help nephrologists and other health professionals provide high-quality care to people with DKD and to address legislative, regulatory, and policy issues that affect the ability of nephrologists and other health professionals to provide high-quality care to people with DKD. DKD remains one of the most common and serious complications of type 2 diabetes.

To view the module or refer the resource to patients, see https://epc.asn-online.org/learning_course/your-kidneys-and-your-health/.

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