Can I trust my memory on my recent HbA1c?

Glycated hemoglobin (HbA1c) is obtained after a blood draw and reflects the overall blood sugar control of the past 2-3 months. It’s a key number for people living with type 1 diabetes (T1D) as it’s closely associated with the risk of long-term diabetes-related complications (e.g., eye or kidney damage ). If you are living with T1D, do you know how high is the chance that you can correctly report your recent HbA1c range? 

You might have heard during the COVID pandemic about the importance of having research data published after it has been examined and criticized by experts. The first research data from the BETTER registry was published in a scientific journal and now we have an answer for the question above: 77.2%. That is to say, around 3 out of 4 participants in the BETTER registry remembered their recent A1c range. 

Why and how did we conduct this study?

HbA1c is used for clinical follow-up but also in research. In a research context, collecting HbA1c value by blood test can cause significant inconvenience for people living with T1D (e.g., travel to research centers and additional blood draws) and represents additional cost for the research team. Therefore, when possible, researchers tend to use values done for usual clinical follow-ups, especially in large-scale projects. Due to strict rules for privacy, getting values from provincial databases and matching them with research participants is nearly impossible. Thus relying on self-reported HbA1c is an interesting option. However, self-reported HbA1c is based on the participants’ ability to recall its value and may be inaccurate. Until now, it was unknown how accurate HbA1c recall is among adults living with T1D. Thus, we conduct this study to answer this question using data from the BETTER registry.

This analysis focuses on adult participants who both answered to the BETTER questionnaires collecting HbA1c range (less than 7.0%, between 7.1 and 8.0% or more than 8.0%) and voluntarily sent us a copy of their most recent laboratory (6 month or less) reports giving the exact value.

Reported HbA1c Highly Agrees with Laboratory Results.

Among the 193 participants for which we had both self-reported and measured values, 77.2% of participants correctly self-reported their HbA1c range. The accuracy was higher in people living with T1D with the lowest HbA1c (87.7%), which was the only significant factor associated with higher accuracy. For example, using an insulin pump, presenting some diabetes complications (e.g. eye damage) or depression level did not influence accuracy. It is possible that in some specific groups (e.g. adolescents living with T1D) this accuracy might be different. We will explore this when more youth will be involved in the BETTER registry. 

A few practical implications.

This study highlights some issues for people living with T1D, healthcare teams, and researchers.

• For people living with T1D:

Remember to ask for your most recent HbA1c value from your healthcare team or get it from Québec Health Record. You can then trust your memory on your recent HbA1c value. Yet, the best way is still to use a notebook or your phone/computer to record the value each time. 

• For healthcare teams:

On the rare occasion you cannot get access to the result, you can trust people living with T1D to report a reliable recent HbA1c value.

• For researchers: 

Asking adults living with T1D to report HbA1c as a range is an appropriate and reliable method with lower cost and higher feasibility to collect HbA1c information for projects relying on patient-reported outcomes (e.g., large-scale registry and real-world studies).

More results to come!

Again, we would like to take this chance to express our greatest gratitude to all people who participate in the BETTER registry. Notably, this is the first published research article from the BETTER project and we can assure you that there are more on the way (e.g., what are the mean HbA1c, the hypoglycemia frequency or the stigma of people living with T1D in BETTER)! Please stay tuned! 

A specificity of the BETTER registry is that it was built with patient-partners who live with T1D and who are associated throughout the process. One of them is a co-author of this first research article.

We encourage you to share the BETTER initiative to people living with T1D so that they also have a chance to contribute to scientific progress and to help people living with T1D worldwide embrace a better life.