Hypoglycemia (low blood glucose) can be terrifying. Even a relatively mild hypo can be so uncomfortable, nerve-wracking, stressful, and scary that you might purposefully run your blood glucose levels high to reduce your risk of going low.

Fear of hypoglycemia (FoH) is a known challenge for people with type 1 and type 2 diabetes, but there very few actual resources to help healthcare providers identify and treat it in a clinical setting.

After conducting extensive research with participants in the T1D Exchange Registry, researchers from T1D Exchange have developed a Fear of Hypoglycemia Screener tool — with support from Lilly Diabetes — enabling diabetes clinicians across the US to work it into routine patient care.

The research involved in developing the screening tool was recently published in the Journal of Patient-Report Outcomes: “Development and Validation of Fear of Hypoglycemia Screener: Results from the T1D Exchange Registry”.

First, what is “Fear of Hypoglycemia”?

Put simply, FoH is when a person with type 1 or type 2 diabetes is consistently and purposefully running blood glucose levels at higher levels to reduce their chance of experiencing hypoglycemia.

“FoH is defined as an ‘extreme worry or anxiety about low blood glucose and its consequences’,” explains published research. FoH in people with diabetes can significantly impact your “quality of life, psychological well-being, and self-management of the disease”.

Unidentified FoH can also create a great deal of confusion and misguided care with your health care team. Imagine, for a moment, that your healthcare team doesn’t know you’re struggling with FoH while they are also trying to help you reach your HbA1c goals.

It’s no surprise that anxiety and stress-related disorders are very common in people with diabetes — due to the hour-by-hour work of managing insulin and blood glucose levels.

FoH is a very specific type of anxiety related specifically to hypoglycemia. Over time, FoH can lead to:

  • Persistently higher-than-target HbA1c levels
  • Increased risk of diabetes-related complications
  • Increased risk of diabetes ketoacidosis
  • Overall reduced energy
  • Overall reduced quality of life

If you think you might be struggling with FoH as a person with type 1 or type 2 diabetes, talk to your healthcare team. You can work with your doctor, CDCES, and a mental health professional to look at what’s going on and determine how to increase your ability to prevent and manage lows while reaching your blood glucose targets.

Creating a Screening Tool to Identify “Fear of Hypoglycemia”

Researchers at T1D Exchange developed the final screening tool in mid-2020. The initial screener was developed based on current FoH questionnaires and interviews with health care providers and patients.

An 11-item screener for FoH was developed from this previous work, which was then tested via an online survey in 2020, where the final 9-item screener was developed.

Next, they recruited participants in the T1D Exchange Registry. The T1D Exchange Registry is a longitudinal research study designed to capture the experiences and challenges of individuals living with T1D.

Participation requirements in the FoH screener study included:

  • At least 18 years or older
  • Been diagnosed with T1D for at least 1 year
  • Living in the United States

Participants would validate the assessment and efficacy of the screening tool through a cross-sectional, web-based survey.

Designed to assess a wide-range of emotions and experiences related to diabetes and hypoglycemia, the screener was also adjusted for gender, age, duration of T1D, insulin pump use, and CGM use.

About the Participants

  • 592 qualified participants
  • Mean duration of T1D: 24 years
  • Mean age of participants: 43 years old
  • 30% reported at least one “severe hypoglycemia” episode — defined as needing care from someone else due to an altered physical/mental state — during the previous 12 months
  • 33% reported “impaired hypoglycemia awareness” — defined as a lessened awareness/sensation of symptoms related to low blood glucose

Results of the FoH Screener

The scores of each participants’ survey determined the degree of FoH they were experiencing:

  • Insigifiant FoH: Below 9
  • Low FoH: 9-30
  • High FoH: 31-45

The screener tool also tracks who has been properly assessed for FoH and who hasn’t — a critical detail to support a clinic’s ongoing patient care workflow.

Compared to those with “low” FoH scores, participants with “high” FoH scores had:

  • Average A1c levels about .52% higher
  • Average blood glucose levels about ran about 13 to 25 mg/dL points higher
  • Higher levels of depression, anxiety, and diabetes distress
  • Higher body weight
  • Frequent severe hypoglycemia episodes
  • Increased likelihood/risk/diagnosis of comorbidities (other health conditions)
  • Higher blood glucose level they considered “low”

By identifying FoH, you and your health care team can work together to address or prevent this wide variety of concerns and challenges.

What’s next: working the FoH screener into routine patient care

“Our goal was to develop a valid, short, and actionable FoH screener for clinical use,” explains the T1D Exchange study authors.

“One limitation is that the FoH screener was validated only in an adult population with T1D. Future research should examine the possibility to extend the screener for use among adults with T2D.”

The Registry participants also have relatively low A1c levels. Considering the significant percentage who still tested high for FoH, the study authors expect the screener will be very useful identifying FoH in those with higher A1cs.

“This screener can fill the gap in diabetes psychosocial care by providing a valid, short, and actionable tool for HCPs to utilize in clinical practice,” explains the study. “The screener is a tool to initiate conversations and identify problematic FoH so that providers can assess the sources of their patients’ fears and make necessary treatment decisions or referrals.”

Learn more about our research here.