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In March of 2020, T1D Exchange quickly recognized — along with the rest of the country — that COVID-19 was spreading rapidly throughout the nation. With so little information on how it might impact people with chronic illnesses like type 1 diabetes (T1D), we realized there was an opportunity and a responsibility to facilitate some form of research and surveillance of its effects on this population.
The urgency was clear: a protocol was written and submitted to the Institutional Review Board and approved in a record-breaking two hours.
The T1D and COVID-19 Surveillance Study focused on individuals with T1D who were suspected or confirmed to have contracted COVID-19. This was the first U.S. based, multi-center study to examine patient characteristics and adverse outcomes among individuals with confirmed or suspected COVID-19.
Collecting Data on COVID-19 in People with T1D
The initial collection of data began in April 2020, and with each passing week more interest would grow from clinics in the T1D Exchange Quality Improvement Collaborative (QIC) as well as new clinics outside of the QIC. The study grew to a total of 65 participating clinics today and over 750 submitted case reports.
“We have been sharing our findings routinely with a network of over 80 endocrinologists through
monthly webinars and routine email communications,” explains Osagie Ebekozien, MD, MPH, CPHQ, and Vice President of Population Health and Quality Improvement at T1D Exchange.
T1D Exchange produced a 32-question survey that participating clinics could fill out regarding any patient with a suspected or confirmed diagnosis of COVID-19.
The survey gathered information on many aspects, including:
- Blood glucose levels, ketones,
- Presenting symptoms, duration of symptoms
- Treatment the patient received
- ER visits, ICU and hospital admissions
- Gender, race, ethnicity
- Education level
- Insurance coverage
- Height, weight, BMI
- Adverse events: DKA, severe hypoglycemia, etc.
- New diagnosis of T1D
- Possible delayed diagnosis because patient avoided hospital due to COVID-19 concerns
- Most recent HbA1c value
- T1D treatment: insulin pump, continuous glucose monitor (CGM), MDI
- Non-T1D medications
- If they received influenza vaccination
- Comorbidities: complications, cancer, hypertension, etc.
“Our results have helped inform clinical care and population health improvements on Diabetic Ketoacidosis (DKA),” adds Ebekozien. “We have also shared our findings with policy-making and advocacy organizations like American Diabetes Association (ADA), Centers for Disease Control and Prevention (CDC), and JDRF.”
Key Findings: What We’ve Learned So Far About COVID-19 & T1D
Initial results from the earliest surveillance research included 33 COVID-19 confirmed positive cases and 31 COVID-19-presumptive cases, concluding in the following key findings:
- The most prevalent presenting symptom reported was high blood sugar, followed by fever, cough, nausea and fatigue.
- More than 50 percent of cases reported hyperglycemia.
- Nearly one-third of cases experienced DKA and required hospitalization.
- More than 50 percent of cases had no adverse COVID-19 or diabetic outcomes.
- There were two reported deaths among adult patients with other underlying comorbidities.
- People of color with T1D are four times more likely to experience DKA compared to their non-Hispanic White peers.
*Learn more about this concerning discovery next in this report.
We expect to announce additional risk factors, insights and outcomes in pediatric and adult patients in the coming months as more data is collected and analyzed.
The published research, led by Ebekozien, was the result of working collaboratively to share results, insights in our monthly “T1D COVID-19 Webinars” for clinicians and peer-review publications.
Racial Inequities Among People with T1D and COVID-19
The results from our COVID Surveillance study brought to light many of the healthcare inequities faced by people of color. These findings sparked a national conversation in the diabetes community after being published in The Endocrine Society’s Journal of Clinical Endocrinology & Metabolism, and reported on by several media outlets, including:
The researchers analyzed data from 180 people with T1D and COVID-19 from 52 clinical sites in the United States. The study found Black patients were four times more likely to be hospitalized for DKA than Caucasians. Black and Hispanic patients were also less likely to use diabetes technology like CGMs and insulin pumps, and they had worse glycemic control than Caucasian patients.
“Our findings of troubling and significant inequities call for urgent and targeted interventions, such as culturally appropriate diabetic ketoacidosis awareness campaigns, increased CGM coverage for minority patients and health care provider participation in a QIC clinic,” Ebekozien says.
Structural and systemic racism have always contributed to adverse outcomes for people of color with T1D, but this is the first major study to examine racial-ethnic inequities for people with T1D and COVID-19.
Key findings include:
- Non-Hispanic White patients had a lower median A1c at baseline (8.3%) compared to non-Hispanic Black (11.7%) and Hispanic (8.9%) patients. Relatedly, non-Hispanic White patients were more likely to be on CGM and/or insulin pumps than non-Hispanic Black or Hispanic patients, and also be on private insurance.
- Non-Hispanic Black and Hispanic patients were significantly more likely to present with DKA following COVID-19 (61% and 24% of cases, respectfully) compared to non-Hispanic White patients (7%). When data was adjusted for age, A1c, sex, and insurance type (public or private), the association between DKA and non-Hispanic Black or Hispanic identity became even stronger. Further, Non-Hispanic Black and Hispanic patients were also more likely to be hospitalized (68% and 40% of cases, respectfully) than non-Hispanic White patients (19% of cases).
Ebekozien offers two actionable items to improve outcomes and mitigate disparities in COVID-19 and type 1 diabetes:
- Identify and redirect attention on patients susceptible to these social inequities.
- Stand up for systemic change in your community, taking data-driven approaches to moving policy in the right direction.
T1D & COVID-19 Surveillance Study: 5 Published Manuscripts
Thus far, research led by Ebekozien has resulted in 5 published manuscripts aimed to help clinics across the country better develop more effective treatment for people with T1D in the face of COVID-19:
“Type 1 Diabetes and COVID19: Preliminary Findings of a Multi-Center US Surveillance Study” in the American Diabetes Association’s Diabetes Care, June 2020.
More than 60 patients with T1D were monitored for their presenting symptoms, adverse outcomes, comorbidities, and other details which were documented in a 32-question survey filled out for each patient.
“COVID-19 Hospitalization in Adults with Type 1 Diabetes” in The Journal of Clinical Endocrinology & Metabolism. November 2020.
In this study involving 113 COVID-19 cases in people with type 1 diabetes, 58 were hospitalized — most of whom were older, identifying as non-Hispanic Black, using public insurance, struggling with hypertension, and less likely to to be using a CGM or an insulin pump.
“Increased DKA at Presentation Among Newly Diagnosed T1D Patients With or Without COVID‐19; Data From a Multi‐Site Surveillance Registry” in the Journal of Diabetes, December 2020.
An increase in cases of DKA at T1D diagnosis between the months of April and August 2020 are thought to be a result of delaying seeking help in an effort to avoid hospitals due to COVID-19 concerns.
“Inequities in Diabetic Ketoacidosis Among Patients with Type 1 Diabetes and COVID-19: Data from 52 US Clinical Centers” in the Journal of Clinical Endocrinology & Metabolism, December 2020.
Data collected from 52 clinics concerning 180 patients with type 1 diabetes and a confirmed COVID-19 diagnosis further demonstrated higher rates of DKA in non-Hispanic Blacks and Hispanics compared to Whites.
“Equitable Post-COVID-19 Care: A Practical Framework to Integrate Health Equity in Diabetes Management” in the Journal of Clinical Outcomes Management, November 2020.
As the COVID-19 pandemic shined a bright light on the racially-based inequities of healthcare, a 10-step framework was created to better pinpoint and correct these significant issues. Those 10 steps are:
- Step 1: Review program/project baseline data for existing disparities.
- Step 2: Build an equitable project team, including patients with lived experiences.
- Step 3: Develop equity-focused goals.
- Step 4: Identify inequitable processes/pathways.
- Step 5: Identify how socioeconomic factors are contributing to the current outcome.
- Step 6: Brainstorm possible improvements.
- Step 7: Use the decision matrix with equity as a criterion to prioritize improvement ideas.
- Step 8: Test one small change at a time.
- Step 9: Measure and compare results with predictions to identify inequitable practices or consequences.
- Step 10: Celebrate small wins and repeat the process.
Our surveillance study on COVID-19 and T1D continues, driving much needed research and highlighting the value of the T1D Exchange Quality Improvement Collaborative (QIC).
Stay tuned for future articles that explore the QIC’s work in healthcare inequities and more information on the QIC Change Packages.
For an overview of the QIC, click here.