Helping patients better understand their treatment protocol, the causality of disease, and how medication prevents its progression of the disease is our passion. Many patients that fail to adhere to their doctor’s recommendations often simply don’t understand what to do, or how to take their medication. Patient education plays an important role in the healthcare system by addressing this disconnect. Here are a few examples of work done by Casey Steffen with a focus on patient education.
Hemophilia Joint Visualization Tool
With this tool, doctors help patients see the negative impact on different joints in the body due to nonadherence to a prophylaxis regimen. Doctors use the rotating digital joints to show patients of different ages important structures of the joint and how those structures change following repeated bleeding events. This is one of the most rewarding patient education projects worked on to date.
Global Platform for Hemophilia Patient Education
The HJV tool was originally developed for the UK market. It was so well received, other European markets also began to gain interest in the tool. It was adopted by multiple countries, codified for use within different healthcare organizations, and translated into multiple languages. What became so interesting about that translation process was the different classifications of tissue deterioration based on the demographics of different countries. Disease progression in third world countries was far greater than first world countries. Therefore classification of “Stage 3” joint errorsion for Europe was very different than Asia. In terms of production process, it required a robust methodology to differentiate minute details of deterioration.
Preventing Joint Deterioration in the Next Generation of Patients
As medical educators and healthcare providers, we now know the most effective way to prevent the long-term progression of chronic diseases is to work as early as possible with newly diagnosed children. In the case of hemophilia, we know the best method is to communicate how their life is impacted by the joint disease. The loss of mobility dramatically impacts the life of a person living with hemophilia. That can be difficult for patients to imagine when they feel good and have normal mobility.
Using computers in office visits, physicians allow children to explore different joints with an interactive tool to rotate and explore different stages. When doctors try and relay how chronic bleeds will prevent mobility, they load animation modules demonstrating the decrease in range of motion. Using this visualization, doctors can then personalize that mobility issue and discuss the importance of adherence.
The HJV tool proved to be internationally useful at helping doctors communicate more effectively with their patients. The tool promoted conversations about the impact of hemophilia on their normal everyday life by showing patients the invisible progression of the disease. Thanks to the usage of this tool in doctors offices around the world, the next generation of hemophilia patients are now empowered with life-changing information that can protect their joints for the rest of their lives.
Glycated Hemoglobin A1c Teaching Models
This interactive protein model of Hemoglobin A1c was created to explain the very confusing HbA1c diabetes blood test. This blood test determines how much damage sugar has caused in the body due to prolonged exposure to elevated levels. If patients are unaware that high blood glucose causes permanent damage to the body, they have little motivation to make changes. Visualizing this process of protein glycation demonstrates the importance of good glucose control.
The “A1c” Blood Test
The Glycated Hemoglobin HbA1C blood test, or more commonly known as the “A1c” blood test, is an important test given to nearly every single person with diabetes on the planet and many of those at risk for developing diabetes. It is the universally preferred method of diagnosing the onset of pre-diabetes and the only blood test that does not require overnight fasting. Achieving improved A1C scores is an important milestone in lifestyle intervention programs focused on reversing pre-diabetes.
As important as this blood test is, the HbA1C blood test is systemically misunderstood by patients and confused with acute blood sugar readings. The Hemoglobin A1C protein model solves this problem by transforming blood test results into an interactive scientific model that patients of all ages can explore. Normal hemoglobin would have little no glucose attached, while a person with poorly controlled diabetes might have hemoglobin saturated with glucose. The Interactive Hemoglobin A1c Teaching Model allows patients to attach and detach glucose pieces to represent their most recent blood test result.
Interactive Protein Models as Tool for Pediatric Patient Education
Shortly after completing the design and fabrication of the Hemoglobin A1c Teaching Model, we tested the effectiveness of using it to teach children living with type 1 and 2 diabetes about the HbA1c test. The goal of the experiment was to explain to children the importance of checking their blood glucose regularly, explain what the HbA1c blood test analyses, and how prolonged exposure to glucose causes high HbA1c scores. We contacted the Diabetes Youth Foundation of Indiana to see if they’d like to try using our model during their yearly summer camp retreat.
Four age groups of children were introduced to the model during their discussion about the HbA1c test. The kid’s diabetes educator used the magnetized pieces of glucose (blue) to demonstrate how sugar binds to proteins. To represent increased HbA1c scores, the educator would attach more glucose pieces to the model. By demonstrating the action of protein glycation, she was able to relay complex information about the dangers of glucose while also reinforcing positive self-management practices like checking blood sugars regularly. After the class, the children were asked to answer a few questions about the A1c test and the information they learned while playing with the model. The results were more than fantastic. The diabetes educator reported that every single child took away new information about the test and the importance of good blood glucose control.
If you’re like to purchase a model of HbA1c for yourself or learn more about the HbA1c test, please follow the link below. Each order is custom made by hand by skilled artisans here in the United States.