Diabetic ketoacidosis (DKA) remains one of the most serious emergencies faced by adults living with type 1 diabetes. Even today, DKA leads to thousands of hospital visits in Canada each year. While prevention is absolutely possible, the steps involved: checking ketones, interpreting results, adjusting insulin, and knowing when to seek urgent care, can feel confusing or overwhelming in real life.

A new Canadian study published in the Canadian Journal of Diabetes shines fresh light on why DKA remains so hard to prevent and what could help. For people living with type 1 diabetes, families, and clinicians, the findings reveal the everyday challenges that often go unseen. For the health‑care system, this work highlights the need for clearer education and better tools to support timely action.

👉 Read the full article here: https://www.sciencedirect.com/science/article/pii/S1499267125003995?via%3Dihub

What the Researchers Wanted to Learn

This research team, led by Diabetes Action Canada (DAC) member Dr. Bruce Perkins, and supported by patient partners, including DAC Research to Action Fellow, Wajeeha Cheema, set out to understand the behavioural and practical barriers that make DKA prevention difficult. Instead of focusing only on clinical factors, they explored the lived experiences of adults with type 1 diabetes and the clinicians who support them.

Their goals included:

• Understanding why ketone testing is often delayed or avoided
• Learning how people interpret ketone results and decide what to do
• Exploring the emotional and system‑level factors that affect sick‑day management
• Identifying what makes someone hesitate to seek emergency care—even when they know it’s needed

To gather these insights, the team conducted three focus groups with people living with type 1 diabetes, a caregiver, and health‑care professionals from across Canada. Recruitment through DAC’s national research registry, Connect1d (connect1d.ca), was valuable, ensuring the study included people with lived experience who could speak authentically about day‑to‑day challenges.

What the Study Revealed

Participants described a mix of emotional, logistical, and knowledge‑based barriers that can make DKA prevention harder than it appears on paper.

Key findings included:

• Limited understanding of ketones and their risks. Many participants were unsure when to test for ketones, what the numbers meant, or how ketones differ from typical blood glucose changes.
• Difficulty remembering sick‑day steps. With so many daily diabetes tasks, the details around ketone testing were easy to forget, especially during illness.
• A heavy emotional load. Some participants did not see themselves as “sick” and hesitated to ask for help. Others described burnout and feeling overwhelmed by constant management.
• Negative experiences in the health‑care system. Fear of stigma or feeling dismissed made some people reluctant to visit the emergency department.
• Limited access to supplies and outdated educational tools. Ketone strips can be expensive, and many sick‑day resources were viewed as confusing or overly technical.

At the same time, the study highlighted strong enablers: reminders from clinicians or apps, supportive communities, simple visual resources, and tools that use clear language.

These findings point to practical, actionable improvements, especially as technologies such as continuous ketone monitoring continue to advance.

How Connect1d Strengthened This Research

Diabetes Action Canada is thrilled that Connect1d played a key role in this study.

Connect1d was designed to make it easier for people living with type 1 diabetes to participate in research that matters to them. By using Connect1d, the study team recruited participants directly from a national community of individuals who had already expressed interest in contributing their experiences to science.

This study demonstrates exactly why Connect1d exists:

• to help researchers meaningfully involve people with lived experience
• to ensure studies reflect real‑world challenges, not assumptions
• to strengthen patient‑oriented research across Canada

Looking Ahead: What’s Next for Connect1d in Spring 2026

The insights from this study are already shaping next steps. The research team is now co‑designing an easy‑to‑use, visually engaging DKA prevention infographic with patient‑partners. This new resource will undergo testing and refinement to make sure it is clear, practical, and usable in everyday situations.

For Connect1d, Spring 2026 marks an exciting period of growth. While details will be shared closer to launch, major improvements are underway to make the platform even more intuitive and accessible. New capabilities will enhance how people connect with researchers, shape study priorities, and stay engaged in research that reflects their lived experience.