As high-tech innovations improve diabetes management, patients in underserved communities can often lag behind. Addressing the need for more education, Anne Peters, MD, spearheaded a new project that has created easy-to-read guides that make diabetes education easily understood by underserved populations.
Type 1 diabetes is a challenging condition for any patient to manage, but it is especially difficult for members of underserved communities. In one more example of the disparities in the American healthcare system, well-educated patients have much greater success in controlling their blood sugar through high-tech devices such as insulin pumps and continuous glucose monitors.
To begin with, the user guides are written at an 11th-grade level that is not easily understood by patients at lower literacy levels. A pair of programs funded by grants from the Leona M. and Harry B. Helmsley Charitable Trust are designed to address this issue. The Specialized Technology Education for Pumps & Pens in Underserved Populations with Diabetes (STEPP-UP) Project and the Specialized Technology Education for Patients and Providers — Tools for Continuous Glucose Monitoring (STEPP To CGM) have developed low-literacy English and Spanish language educational guides designed to aid patients from underserved populations.
- High-tech innovations have improved management of diabetes, but patients in underserved communities continue to lag in their ability to make the most of technologies like insulin pumps and continuous glucose monitors.
- New guides are available that address many aspects of diabetes management at a much lower reading level than standard user guides.
- The guides have improved patients’ understanding and reduced distress but lowering hemoglobin A1c levels remains a challenge.
The guides are the brainchild of Anne Peters, MD, and her team at the University of Southern California Westside Center for Diabetes. They worked with the Clear Language Group, a nationally known consortium that has helped create simpler patient teaching tools and information for agencies like the Centers for Disease Control and Prevention, Food and Drug Administration, and National Institutes of Health. The Clear Language Group describes itself as “four independent, women-owned businesses that specialize in health literacy, plain language, and cross-cultural communications.”
Peters says that the process began with focus groups made up of type 1 diabetes patients from underserved communities: “My basic presumption is that I can’t tell what a learner from a different environment would want to see. Interestingly, they really like people’s images and bubbles, like those thought bubbles, but these are spoken bubbles.”
The images of the people featured also look like the population they seek to educate. “The historical issue is that everybody has always been white in all the guides,” Peters says. “I went on a campaign a number of years ago to try to increase the diversity quotients of what the companies were doing, and now if you look at the Dexcom, Medtronic, and Tandem [information], they actually have people of color using the devices, which is a good step, but the information is still at a much higher level.”
“The Clear Language Group could get it down to about a fifth-grade level. You can’t get it lower than that because of the technical terms. Some of those terms you just can’t simplify,” Peters explains.
“These guides made people really feel a lot better but translating this to improvements in hemoglobin A1c remains the hardest part. That is really complicated because it has to do with the environment in which these people live. The social determinants of health are [the strongest influence] when you have type 1 diabetes.” – Anne Peters, MD, professor of medicine, Keck School of Medicine of USC; director, USC Clinical Diabetes Programs, Los Angeles, Calif.
The aim was not to create simple brochures, but comprehensive, multi-page booklets with a wealth of information. For example, the guide on “How do I Use an Insulin Pump?” includes multi-page sections on:
- How Do I Put on the Pump?
- What Do I Need to Know about Insulin and the Pump?
- How Can I Stay Safe When I Am Using the Pump?
- What Are the Common Pump Problems?
Although tailored for type 1 diabetes patients, the guides could conceivably be useful to any patient who uses insulin.
Success and Limitations
“The educational guides really help people feel better,” Peters says. “We reduced diabetes distress. We increased diabetes knowledge. We reduced depression. We did a whole bunch of really good things in terms of making people feel better. But even in conjunction with a really good diabetes educator, these tools didn’t improve patients’ hemoglobin A1c levels, time in range, or episodes of hypoglycemia. They did reduce diabetic ketoacidosis admissions into the hospital or emergency department. So we did really help.”
“These guides made people really feel a lot better but translating this to improvements in hemoglobin A1c remains the hardest part,” Peters says. “That is really complicated because it has to do with the environment in which these people live. The social determinants of health are [the strongest influence] when you have type 1 diabetes.” The guides have enabled some individuals to make great strides in their glycemic control, but not enough to drive the numbers in a study.
“A lot of these patients have jobs that are really tough. They don’t have any protections. They have sick family members that they have to take care of. They have food insecurity. They don’t have the time” to give adequate attention to their own diabetes, Peters says.
“We did a whole bunch of really good things in terms of making people feel better. But even in conjunction with a really good diabetes educator, these tools didn’t improve patients’ hemoglobin A1c levels, time in range, or episodes of hypoglycemia. They did reduce diabetic ketoacidosis admissions into the hospital or emergency department. So, we did really help.” – Anne Peters, MD, professor of medicine, Keck School of Medicine of USC; director, USC Clinical Diabetes Programs, Los Angeles, Calif.
“A lot have jobs where they can’t test with fingersticks during the day. They are so afraid of hypoglycemia that they tend to overreact and underreact. If they see that they are high, they may not give insulin, but eventually when they do, they often give too much. Then they go too low. So how to get people’s hemoglobin A1cs better remains more elusive, but we have achieved how to use the devices and how to feel good about using the devices,” Peters says.
The guides are not copyrighted so anyone can access them on a USC website, print them out, and distribute them to their patients. They required several years to develop them through the focus groups, work with illustrators and language specialists, and many levels of review.
In recognition of these efforts and more, Peters received the 2021 Outstanding Public Service Laureate Award from the Endocrine Society at the recent annual meeting “for decades-long service to the care of under privileged populations, through her professional activities as a physician, her writings, educational activities, and as a volunteer.”
She has been active in creating the Endocrine Society’s guidelines for implementing the new technology that has improved the management of diabetes — and recognized that technology is only as good as the user’s ability to understand it and put it to use.
Seaborg is a freelance writer based in Charlottesville, Va. In the September issue, he wrote about how machine learning technology can predict hypoglycemic events in hospitalized patients with diabetes.
Several guides are available in PDF format from www.uscdiabetes.com/simple-guides. The public domain guides that can be printed or emailed to patients include:
- How Can I Manage My Type 1 Diabetes Better?
- Is the Insulin Pen Right for Me?
- Is the Insulin Pump Right for Me?
- How Do I Use an Insulin Pump?