Ramona Koren remembers “falling apart” when she was diagnosed with type 2 diabetes a decade ago. Her life turned upside down, and she had “no clue” what to do next.
“The first thing I said I needed was education,” Koren said. “There’s so much involved that you literally have to change the way you live your life to manage diabetes.”
Sharon A. Trujillo, a type 2 diabetes patient for over 25 years, recalls a similar sense of panic. She sifted through an avalanche of information about managing her condition – diet, exercise and medications. “You get so overwhelmed that you sit back and don’t change anything because … you just don’t know which way to go,” she said.
This kind of stress, known as “diabetes distress,” is a key reason longtime diabetes patients Koren and Trujillo joined a team of patient partners and researchers to come up with ideas for “patient-centered” diabetes research. They partnered in planning a study that examined two ways of delivering diabetes shared medical appointments (SMAs). Diabetes SMAs are groups of patients meeting with health care professionals to learn how to better manage their diabetes. While research shows SMAs are effective, it is not known what ways of delivering SMAs works best for both patients and clinics.
The Invested in Diabetes research team.
Guided by input from the patient partners, researchers at the University of Colorado Anschutz Medical Campus studied differences between a “standardized” SMA approach and a “patient-driven” SMA approach. Both types of SMAs taught about things like testing blood sugar, eating a healthy diet, and coping with stress. The standardized approach was “by the book” – a health educator taught all the information in the same way for all patients. The patient-driven approach was more flexible and included health educators, behavioral health specialists, and peer mentors (people with lived experience with diabetes).
The research team set out to answer questions about how these two approaches might lead to different outcomes, such as lowering diabetes distress and “Hemoglobin A1c” – a lab test that doctors use to measure blood sugar levels. The study was funded by the Patient Centered Outcomes Research Institute (PCORI).
The patient partners and researchers behind Invested in Diabetes, a 3-year pragmatic trial into diabetes SMAs and how to deliver them in primary care, was led by Bethany Kwan, PhD, MSPH, associate professor and associate vice chair for research, Department of Emergency Medicine at the CU School of Medicine (SOM); and Jeanette Waxmonsky, PhD, associate clinical professor, Family Medicine (SOM) and Health Systems, Management & Policy at the Colorado School of Public Health. The project included many other researchers and was managed by Dennis Gurfinkel, MPH, research services senior professional, ACCORDS (Adult and Child Center for Outcomes Research and Delivery Science).
The researchers engaged a robust team of community members – patient partners and primary care practices, in crafting the study. The research team provided materials and support, but recruited practices were responsible for staffing and running the SMAs themselves. Twenty-two primary care sites participated in Colorado and Missouri, enrolling 1,085 adult patients with type 2 diabetes. The curriculum used was the Targeted Training for Illness Management, an evidence-based, six-session modular group intervention for chronic illness self-management.
‘You’re not only learning from an educator, but you’re also learning practical tips from your
peers on how to manage your diabetes. That’s the power of having the group format.’
– Jeanette Waxmonsky, PhD
A foreboding statistical backdrop – projections show a 165% increase in Americans with diabetes, to 29 million in 2050 (from 11 million in 2000) – adds urgency to improving outcomes for this common chronic disease. “It’s one of the top causes of death in the United States,” Kwan said. “People lose limbs, they lose their sight, it causes other systemic problems and damage to other organs.
“We really are in a difficult position of figuring out how we can help as many people as possible to learn how to manage their diabetes,” she said. “This is a massive problem, and we must figure out how to help primary care practices provide the resources and support that their patients will inevitably need.”
Both diabetes SMA approaches showed statistically significant improvement in diabetes distress, increases in self-care behaviors (such as diet and exercise) as well as improvements in the main clinical indicator for diabetes, hemoglobin A1c.
“Our overall conclusion is that diabetes shared medical appointments are absolutely effective, and providers should use them for their patients and can implement them in ways that make sense for their practices,” Kwan said.
Another takeaway from the study, which continued through the COVID-19 pandemic, was that delivering SMAs using telehealth was not detrimental and, in some cases, beneficial. For example, it allowed practices to reach younger patients who struggled to attend in-person visits due to childcare and work obligations.
In either SMA approach, a key component was the social support and education patients in the groups provided to each other. “You’re not only learning from an educator, but you’re also learning practical tips from your peers on how to manage your diabetes,” Waxmonsky said. “I think that’s the power of having the group format.”
Gurfinkel said the group interventions alleviated the sense of isolation faced by many adult type 2 diabetes patients. “Now they have more support, social support, which is really important to people.”
The researchers also found that education alone is not enough when it comes to chronic disease management. Behavioral health and mental health components are essential, Kwan said. “How do we manage our stress? We all know that stress eating is a thing. So, teaching strategies, or goal setting, or coping with stress, or dealing with people in our lives who don’t make it easy to do the right thing” – are all very important components in the interventions.
The CU team produced an implementation guide that helps primary care practices learn how to start or improve SMA offerings for their patients with diabetes. It has been shared across the American Academy of Family Physicians network and national conferences and is available for primary care practices and others interested in conducting SMAs.
Koren said she enjoyed being a patient partner and hopes to continue in that role for future research.
“For me, being there from the beginning of the study (in 2015), I was able to share that real-world view,” she said. “A big part we helped with, more than anything, was helping the researchers design this with the patient in mind.” Koren, Trujillo, and the other patient partners are working on a guide to help researchers engage patients in their study.