Fear of hypoglycemia (FOH) affects people with both type 1 and type 2 diabetes, yet resources for healthcare providers to address this issue are limited. 

 

What is Fear of Hypoglycemia (FOH)?  

FOH is intense worry about low blood glucose and its potential effects. Many people with type 1 diabetes (T1D), as well as parents of children with T1D, experience this fear. It encompasses a variety of negative emotions related to low blood glucose. 

As a result of FOH, individuals with T1D often intentionally maintain higher glucose levels to reduce their risk of experiencing lows. 

Over time, this can result in: 

  • Persistent A1C levels above target 
  • Increased risk of diabetes-related complications, including diabetes-related ketoacidosis (DKA) 
  • Overall, lower energy levels and quality of life 

 

The T1D Exchange Fear of Hypoglycemia Screening Project  

T1D Exchange started the FOH Screening Project to analyze resources and clinical processes needed for effective FOH screening. It also aims to understand the prevalence of FOH and implement routine screening to identify adults with T1D who experience it. 

After years of research, the T1D Exchange team developed a FOH screening tool. This tool allows diabetes healthcare providers to incorporate it into routine care, helping to identify those needing additional support managing their FOH. It’s critical for providers to assess and understand FOH because its intensity can influence management decisions and impact the overall health of people with T1D.  

The FOH screening tool is based on previously existing questionnaires, interviews, and surveys conducted with healthcare providers, people living with T1D, and caregivers of children with T1D. 

Below, we dive into the research conducted as part of T1D Exchange’s FOH Screening Project.  

 

Background Research 

In 2020, we published research around an existing 14-question survey called the “Hypoglycemic Attitudes and Behavior Scale (HABS)” and the “Hypoglycemia Fear Survey II-short form (HFS-II).”  

We knew the HFS-II was well used as a self-reported tool, but it was too long for healthcare providers to use during office visits with their patients. 

The HABS survey measures people’s worries about low glucose, their strategies to avoid hypoglycemia, and their confidence in managing it. Previous validation of the HABS survey was focused on adults with type 2 diabetes, so we tested the HABS survey with people living with T1D and found that it performed well among the T1D community. 

We then used the HABS and HFS-II (short form) surveys, along with other patient-reported outcomes measures around anxiety, depression, and diabetes-related emotional distress, to assess participants’ experiences with hypoglycemia and hyperglycemia.  

We found that FOH is common in people with diabetes, and it has multiple behavioral and emotional aspects. These findings identified the need for more precise screening for FOH in clinical care. 

We also observed that elevated levels of anxiety, depression, and diabetes-related distress were independently associated with increased FOH, whereas a longer duration of diabetes was associated with less fear. Additionally, experiencing a recent severe hypoglycemic event heightened concern about lows, but did not predict avoidance behaviors. 

 

Developing a New FOH Screening Tool: Understanding Healthcare Provider Perspectives on FOH 

As we were drafting a new FOH screening survey, we conducted interviews with healthcare providers to get their perspectives on FOH and screening. We discovered that, due to the lack of a standardized questionnaire, providers relied on informal conversations, anecdotes shared by their patients, and data from insulin pumps and continuous glucose monitors to identify individuals struggling with FOH. 

Our research indicated that developing a straightforward and reliable screener could help clinicians identify people experiencing FOH earlier and connect them with the most appropriate support for their diabetes management and their mental health.  

 

Validating a New FOH Screening Tool: Testing with People with T1D 

Once the T1D Exchange team drafted a screening survey for FOH, we needed to validate that it was a reliable way to identify people with T1D who are experiencing FOH. This tool included nine questions and was evaluated for reliability and validity with participants from the T1D Exchange Registry. 

These results allowed us to establish cut-off scores indicating each participant’s level of FOH. These values could be used to inform clinical action. 

  • Insignificant FOH: Below 9 
  • Low FOH: 9-30 
  • High FOH: 31-44 

Through testing the new screener with people living with T1D, we found that the new FOH screener showed consistency with existing surveys and mental health questionnaires.   

 

Prevalence and Characteristics of Fear of Hypoglycemia 

As the next step in the T1D Exchange FOH Screening Project, we assessed the prevalence and characteristics of FOH in adults with T1D from endocrinology clinics. 

Of 553 adults with T1D, we found that: 

  • 30% had high FOH scores.
  • Most reported FOH while driving, sleeping, being out in public, or when alone. 
  • Most indicated they consumed more food than necessary to prevent low glucose levels. 

 

Compared to participants with low FOH scores, those with high FOH scores had: 

  • A1C levels about 0.5% higher 
  • Average glucose levels 13 to 25 mg/dL higher 
  • Increased depression and anxiety 
  • Higher body weight 
  • More frequent severe hypoglycemic events 
  • Higher incidence of impaired awareness of hypoglycemia 
  • Greater comorbidities 
  • Higher thresholds for what they considered “low” glucose levels 

 

We also conducted focus groups with diabetes healthcare providers to evaluate the feasibility of integrating this screening tool into clinical practice. 

During these discussions, healthcare providers expressed the need for a validated FOH screening tool to better support their patients and indicated their desire to implement the screener in their clinics.  

However, the providers also identified several key challenges they face in implementing the screener, which included: 

  • Time constraints during clinic visits 
  • Prioritization of individuals for FOH screening 
  • Availability of mental health professionals 
  • Resource limitations 

 

In Summary 

T1D Exchange researchers spent several years developing and validating a FOH screener for adults with T1D. This screening tool can improve diabetes psychosocial care by providing healthcare providers with a valid, concise, and practical instrument that can be easily utilized in clinical settings. 

Several questions within the screening tool have shown significant associations with elevated A1C levels, highlighting the clinical relevance of the screener. 

The FOH screener can facilitate essential conversations between healthcare providers and people with T1D about the emotional effects of hypoglycemia. It can also help assess whether additional mental health support is necessary.  

Knowing a person’s level of FOH allows providers to better understand the sources of the fear and tailor medical guidance to meet the specific needs of the individual. 

 

Want to learn more about the emotional and practical challenges of living with T1D and FOH? We asked our T1D community members to share their honest, personal experiences with FOH and how they successfully manage it. Read about their experiences.