ADCES 2023: Improving Patient Care & Outcomes in Type 1 Diabetes  - T1D Exchange

This year’s Association of Diabetes Care & Education Specialists (ADCES) conference was held in Houston, TX on August 4 – 7. While celebrating 50 years of advancing diabetes care and education, ADCES brings diabetes experts together — including clinicians, researchers, and industry professionals.  

T1D Exchange attended with one oral presentation and three poster presentations thanks to quality improvement work from our Quality Improvement Collaborative (T1DX-QI) and research from our online patient Registry. 

Here’s a closer look at our work presented at ADCES — all of which focus on improving care and quality of life for people with diabetes. 

Advance Equity and Efficiency in your Clinic with Quality Improvement Tools 

Authors: Osagie Ebekozien, MD, MPH, Holly Hardison, BS, Nicole Rioles, MA, Laurie Ann Scher, MS, RD, CDCES, FADCES 

Striving to help clinics provide efficient, equitable, and impactful care, this presentation explained how the T1DX-QI framework has been adapted to address healthcare disparities in diabetes. 

“My goal is to encourage educators to adopt an improvement mindset to improve effectiveness (doing the right thing), efficiency (doing things in the right time), and equity (doing right for everyone),” explains Ebekozien, MD, MPH, and Chief Medical Officer at T1D Exchange. 

Ebekozien presented the 10-step framework utilized by participating clinics from across the U.S. in the T1DX-QI. The T1DX-QI currently includes 54 clinics, reaching 85,000 people with type 1 diabetes (T1D). 

With an emphasis on health equity, he highlighted the vast differences in A1c levels and technology used between different ethnic groups — with the highest A1cs and lowest technology use in non-Hispanic Black and Hispanic people with T1D. 

Through its custom quality improvement framework adapted specifically to address health inequity, the T1DX-QI strives to change disparities like this by identifying and improving gaps in the clinical patient care process. 

“Quality improvement is a systematic approach to examine processes to improve patient outcomes, care, and clinic workflow versus traditional research, which involves a scientific study to generate new evidence and knowledge for the medical community,” reminds Ebekozien, on the difference between quality improvement work and traditional research. 

Offering specific clinical examples for each, Ebekozien took the audience through the T1DX-QI’s equity-adapted 10-step framework: 

1. Review program/project baseline data for existing disparities 
2. Build an equitable project team, including patients with lived experiences 
3. Develop equity-focused goals 
4. Identify inequitable processes/pathways 
5. Identify how socioeconomic factors are contributing to the current outcomes 
6. Brainstorm possible improvements 
7. Use the decision matrix with equity as a criterion to prioritize improvement ideas 
8. Test out one small change at a time 
9. Measure and compare results with predictions to identify inequitable practices or consequences 
10. Celebrate small wins and repeat the process 

Ebekozien challenged the audience to acknowledge five examples of clear disparities that exist within many diabetes clinics with the “Five Whys Exercise”: 

• Why does the clinic prescribe CGMs to people of color less frequently? 

• Proposed solution: Review processes for equity implications 

• Why is CGM prescribing not discussed routinely in clinic meetings? 

• Proposed solution: Standardize an encounter checklist or T1D education 

• Why do providers believe a patient cannot afford a CGM before attempting and trying? 

• Proposed solution: Combat with patient stories and narratives 

• Why do providers have implicit bias/beliefs about patients of certain ethnicities that influence CGM prescriptions? 

• Proposed solution: Provide implicit bias training via forced EMR prescription 

• Why do human nature and internalized views influence patient care? 

• Proposed solution: Identify cultural norms and expect continuous growth 

Clear examples from participating clinics related to improving A1cs and increasing technology use demonstrated the efficacy of the 10-step framework and its ability to dramatically improve patient health outcomes on a large scale. 

Diabetes Distress Perceptions, Experiences, and Diabetes Education Preferences in Adults with Type 1 Diabetes  

Authors: Katherine Chapman, BA, Emilee Cornelius, MPH, Wendy A. Wolf, PhD, Caitlin S. Kelly, PhD 

This research comes from the T1D Exchange Registry, shining a light on diabetes distress (DD) in adults with T1D. Researchers explain that while DD interventions have been developed for teens and adolescents, there is far less research on DD in adulthood. 

The primary objectives of this research were to gain a better understanding of DD in adults with T1D and gather detailed descriptions and perceptions of DD from adults with T1D. 

• Participants: 275 participants  
• Age: 18 years old or older 
• Mean age: 45 years 
• Mean years with T1D: 24 years 
• Tech: 85% use a CGM, 79% use an insulin pump 
• A1c: 86% with A1c at/below 7.0% 

Highlights from the study: 

• 89% of participants said they have experienced DD in the last 12 months, but 76% were not familiar with the concept of DD.  
• Very few — only 16% — reported experiences of DD to their healthcare team. 
• 45% of participants self-reported “moderate” levels of DD. 
• 75% expressed feelings of T1D-related “powerlessness”. 

“Most participants reported their healthcare team had not discussed DD with them extensively,” explains the study authors. “Yet, many participants had recent or current experiences with DD. There may be a lack of engagement about DD from providers in ways that resonate with their patients.”  

Researchers pointed to the value of diabetes educators, who sit in a unique position to help patients identify and address DD.  

Engaging People with Diabetes in a National Learning Network: Insights from T1D Exchange 

Authors: Nicole Rioles, MA, Holly Hardison, BS, Jeniece Ilkowitz, RN, MA, CDCES, Emily Dewit, MASL, Faisal Malik, MD, MSHS, Yasi Mohsenian, MPH, Vana Raman, MD, Amy Ohmer, Trevon Wright, MHA, Anton Wirsch, MS, Osagie Ebekozien, MD, MPH 

This quality improvement work from the T1DX-QI highlights the importance of including people with diabetes (PWDs) in the overall process of improving healthcare systems — and how it’s proven effective in participating clinics within the T1DX-QI.  

“Using a Chronic Care Model of participator design,” explains the study, “the T1DX-QI convenes a PWD committee and supports shared decision making with their healthcare providers across 55 medical centers.” 

Through a survey, the T1DX-QI collected 1,127 responses from participants in the T1D Exchange Online Community to questions about their personal experience receiving patient care as a person with T1D.  

Highlights from the survey include:  

• 22% reported their HCP asks about their diabetes goals and priorities before or during the visit. 
• 10% reported their HCP asks about life goals and how they align with their diabetes goals and priorities.  
• 34% reported their HCP brings up goals from previous discussions.  

Detailed responses from patients included:  

• “My Endo and I have a collaborative appointment each and every time. We are working together through my T1D management.”  
• “I keep a list […] of issues or questions that I want to discuss with my endo. I also keep track of my test results… Sometimes I don’t have any specific issues. The basic goals are simply to keep things in check and avoid the lows. My endo is fantastic, and she lets me be human and ‘live a little’ to enjoy life. I really can’t ask for anything more.” 
• “When I first met my….endo, I specifically [said] that I expected her to consider me an equal partner in diabetes management decisions. She readily agreed and kept her word. Before each appointment, I make a list of subjects/concerns and send it to her via MyChart. I share the list with a nurse who asks me a variety of questions for the first half of the appointment. On the chart notes I’m given after each appointment, her management goals are listed, not mine. 
• “I am not asked, but I am told what my goals should be. (No lows, but under a certain number, etc.) That is what I expect.” 
• “Our medical system is not conducive to asking or answering questions about goals. The time allotted is filled with being weighed, having an A1C done, a foot check… and […] pump questions. Life goals, without question, and diabetes goals beyond getting a better A1C, are way too time-consuming to squeeze into whatever’s left of an appointment. Medicare takes care of most of that time by checking off boxes. A lifetime disease deserves way more time for discussion than it’s getting. The system’s broken!”  
• “I have learned to stay silent.” 

Clinicians in the T1DX-QI also shared insights on receiving feedback from patients about their care.

Detailed responses from clinicians in participating T1DX-QI centers include: 

• “It’s incredibly valuable to have ideas to bounce around with others and important that families feel heard. It also has helped guide us in our outreach for QI projects knowing what they like/don’t like.”  
• “They provide a perspective that is not available to the team without them. They often act as advocates, raising the bar for expectations for clinical care and outcomes.” 
• “We love their ideas and had an extremely successful [meeting] for our patients where our FAC acted as a panel with predetermined questions to help new onset[…] parents deal emotionally with a diagnosis. They provide the most insightful information to medical students that a lecture would not be able to. People want to share their experiences and help others and teach others. It’s also extremely therapeutic to them, not just [for] those they are helping.” 
• “We think we have a good idea, but when we run it past our parents, they give us helpful feedback about why it may or may not work. They have identified ‘failures’ in our process that we didn’t think of and have brainstormed ideas that were from those with lived experience.”  
• “Our group is not very diverse and have learned that there are voices in our community that we are missing. Finding ways to increase diversity or include families with a language other than English would be something I would be interested in learning from others about.”  

“Through the T1DX Online Community,” explains the study authors, “we learned that, nationally, most HCP do not ask PWD about their diabetes or life goals. There are opportunities in clinical practice flow to ask PWD about their goals so that HCP can provide more meaningful, person-centered care.”  

National Trends in Certified Diabetes Care Education Specialists Distribution: Data from T1DX-QI 

Authors: Holly Hardison, Emma Ospelt, MPH, Osagie Ebekozien, MD, MPH, James Dawson, BS, Stephanie Ogburn, CDCES, Isabel Reckson, RD, CDCES, MPH, Alisha Virani, MS, RD, LD, CDCES, Kimberly McNamara, BSN, CDCES, Rachel Fenske, PhD, RD, Aledia Saenz, APRN, FNP_BC, CDCES, Nicole Rioles, MA 

This quality improvement work from the T1DX-QI focuses on the critical value of the certified diabetes education care specialist (CDCES) role. Across the country, CDCES are limited while also being in high demand. 

“The CDCES role is critical in providing education, understanding patient needs preferences, and assisting the care team in collaboration and support,” explains the study. 

Participating clinics in this project were analyzed, comparing the relationship between FTE (full-time equivalent after time spent on research and administrative efforts) of CDCES in adult clinics vs. pediatric clinics. It also compared CDCES availability in clinics with a majority of publicly insured patients vs. privately insured patients. 

Results of the analysis included:  

• The average reported FTE for adult centers was 2.7 while the average reported FTE for pediatric centers was 5.5, with a p value of 0.003. 
• Averages were compared per 1,000 patients as a standard. Five pediatric centers stated that they have over 10 FTE for CDCES while no adults were above 5 for FTE.  
• Two of the adult centers also reported that they have 0 FTE for CDCES while only 1 pediatric center reported 0 FTE.  
• There was no significance between centers that serve the majority of patients on public vs. private insurance.  
• Geography of center location also showed no significance in FTE distribution.  
• Results from this analysis emphasize the call to action to support increased staffing at adult centers.  

“Results are representative across national regions, showing that this disparity between adult and pediatric is impacting the care that is provided in adult diabetes/endocrine ambulatory setting,” explains the poster.  

“Limited staffing can lead to delays in care, lower quality care, and clinical staffing burnout. Care should be comprehensive and coordinated, which can be more challenging to deliver with limited staffing support.” 

The overall conclusion: clinics are understaffed, and the need for more CDCES is clear.