The Family Factor Survey: What At-Risk Families Don’t Know About Type 1 Diabetes Screening

For some families, type 1 diabetes (T1D) doesn’t arrive quietly—it shows up in an emergency: a sudden illness, a rushed trip to the ER, sleepless nights filled with questions.

Even in families already impacted by T1D, a new diagnosis may often come as a shock. But what’s more surprising is that many of those same families may not realize they’re at risk in the first place.

New findings from “The Family Factor: A T1D Risk Awareness Survey,” commissioned by Sanofi, reveal critical gaps in risk awareness among adults and caregivers of children with an immediate family member with T1D. Below, we explore potential barriers keeping T1D families from early detection through screening and what we as a community can do to motivate action. 

Key Survey Findings from The Family Factor Survey:

What Are the Risks of Having a Family Member with T1D?

If someone in your family has T1D, your risk of developing the disease can be up to 15 times greater. But according to “The Family Factor” survey findings, roughly one in four respondents (26%) with a first-degree family history of T1D don’t believe that they or their child are at risk of developing the disease. 

This is concerning, as undiagnosed T1D may lead to serious, potentially life-threatening complications, including diabetic ketoacidosis (DKA). Many at-risk families also have a limited understanding of these complications. In fact, 28% of people who responded to the survey have either never heard of DKA or do not know what it is.

The survey reveals that much of this may have to do with persistent misconceptions both in terms of what the disease is, and who it affects:

• 63% of respondents believe it primarily affects children, when in fact adults represent ~60% of those newly diagnosed with T1D each year. 
• 38% of respondents incorrectly associate T1D with physical inactivity, when in fact T1D is an autoimmune disease not caused by lifestyle factors. 
• Others surveyed believe: 
  • Autoantibody screening isn’t necessary for adults (21%).
  • Autoantibody screening is only available after symptoms appear (26%).
  • Autoantibody screening is only available through specialists (31%).

These misunderstandings may have real consequences that shape decisions and delay timely risk detection.  

Why Are At-Risk Families Not Getting Screened for T1D?

Despite 82% of respondents expressing concern about their own or their child’s risk of developing T1D, 46% say they are either not considering screening or haven’t decided if they will in the next six months.  

This is because the barriers aren’t just logistical, they’re also emotional:

• Some surveyed families worry about the anxiety that a positive result could bring (21%). One in 10 would rather not know about future health risks.

For surveyed caregivers, guilt may also play a role in hesitancy: 19% say they would feel guilty if their child developed T1D because they’d feel like it was their fault.   

The survey also revealed basic questions about the process of screening:

• How do I even get screened? 18% of respondents didn’t know how.

• What happens if the result is positive? 17% of respondents said they would not know what to do next.

• Does this matter if we’re healthy right now? 23% of respondents said that because they or their child are healthy now, they’d want to wait until something changes. 

When those questions go unanswered, inaction takes over.

Are Healthcare Providers Talking to Patients About T1D Screening?

Healthcare providers play a critical role in helping families navigate risk. But those important conversations aren’t always happening.

While many survey respondents (62%) say their healthcare provider has discussed their or their child’s T1D risk, only 28% of respondents familiar with screening say their healthcare provider initiated a discussion with them about it.

The significance of these conversations can’t be understated. When people don’t hear about screening from a trusted healthcare provider, they may feel like it is unnecessary, but when that conversation does happen, it can be transformative.

What Motivates Families to Screen for T1D?

Learning about personal T1D risk can be a powerful motivator, but broader support and guidance remain critical to encouraging action. A staggering 85% of respondents stated that they felt more likely to screen once they learned they were at a heightened risk of developing the disease. 

So what could help people take the next step?

A doctor’s recommendation is the strongest motivator across surveyed caregivers and adults at risk (56%). Other clear drivers include:

• Learning more about the screening process (49%)
• Hearing from others who have been screened (37%) 
• Learning there’s a support community available after screening (30%)

In other words, T1D families don’t just need a healthcare provider’s recommendation— they may also need to feel empowered by the community and reassured that they’re not facing the unknown alone. 

How Can Early T1D Detection Change Outcomes for Families?

Early detection has the potential to change what it’s like to live with T1D, but only if families have the awareness, access and support to act on it. For families navigating life with T1D, a diagnosis doesn’t have to begin with a medical emergency like DKA. It can begin much earlier with understanding, community and the decision to learn what may lie ahead before the situation becomes urgent. 

Healthcare providers can play a critical role in bridging that gap, but it will take a collective effort across healthcare, education and the community to make early detection the norm. The earlier families understand their risk, the more power may have to shape what comes next.

Find out your risk factor for type 1 diabetes today, and talk to your healthcare provider about autoantibody screening.

Learn more about “The Family Factor Survey” here.