Living with type 1 diabetes (T1D) means constantly trying to keep your blood sugar levels in range to avoid complications. T1D is a demanding condition that involves a complex day-to-day routine. However, trying to keep your blood sugar levels in range puts you at risk for hypoglycemia (low blood sugar).
While many studies have been conducted on hypoglycemia, very few have looked at what people with T1D actually need to mitigate this risk. After all, it is not only the most common complication, but it is also the one that people with T1D fear the most.
A large-scale research project called Hypo-RESOLVE conducted a study in four countries (Denmark, Germany, Netherlands and United Kingdom) in the hopes of understanding the support that people with T1D need to manage the risk of hypoglycemia. As part of this study, 219 adults with T1D answered the following four questions:
- What do you wish other people understood about hypoglycemia?
- What would you like your healthcare professional(s) to do differently to support you in avoiding or managing hypoglycemia?
- What would you like other people to do to support you in preventing and managing hypoglycemia?
- What would you tell a close friend about what it’s like living with the risk of hypoglycemia?
These questions aimed to determine what support healthcare professionals, family members, friends, colleagues and others can provide to help people with T1D prevent, manage and live better with the risk of hypoglycemia.
Friends, family and others
Here is what people with T1D would like their friends and family to be able to do to support them:
- Learn about hypoglycemia prevention. Participants said that their family and friends should have access to training courses to gain a better understanding of hypoglycemia and correct some misunderstandings (e.g., mistaking hypoglycemia for intoxication, suggesting insulin to treat hypoglycemia). Training would also help them learn about the symptoms, causes, steps to take and appropriate treatment. Participants also mentioned that they needed more flexibility at work when dealing with hypoglycemia.
- Understand the seriousness. Participants would like their friends and family to understand how serious the consequences of hypoglycemia can be if left untreated (e.g., seizure, coma, long-term cognitive impairment), so that they don’t underestimate the danger.
- Remain calm and be kind. Participants said that it is crucial that friends and family members remain calm and empathetic. They would also like to have some time and space, as needed, when recovering from an episode.
- Understand that symptoms can vary. Hypoglycemic episodes vary in terms of symptoms, severity, impact and recovery time.
Some of the unmet needs mentioned by participants relate to healthcare professionals. Here are a few of the areas where healthcare professionals could provide better support to people with T1D to manage the risk of hypoglycemia:
- Access to new technology. To help anticipate hypoglycemic episodes and better understand trends (e.g., continuous glucose monitoring system).
- Training. More information on the causes, symptoms and consequences.
- Personalized care. More empathy, less judgment.
- Psychological support. To manage the fear and anxiety associated with the risk of hypoglycemia.
Some participants in the study said they do get enough support from their healthcare team. All in all, each person has their own needs, and family, friends and healthcare professionals need to ask how they can specifically help.
The BETTER project tackles hypoglycemia in Quebec
Launched in 2018, the BETTER project is a large-scale research project on hypoglycemia. It was developed by researchers and healthcare professionals, and is conducted in collaboration with adults and parents of children with T1D. The project leads different studies and aims to create a registry (a kind of census) of people who live with T1D.
To date, more than 2,000 people have signed up for the registry. Participation in the registry helps to assess the frequency and severity of hypoglycemic episodes, symptom awareness and the fear of hypoglycemia.
If you are an adult with T1D or have a child with T1D in Quebec, please take about 10 minutes of your time to sign up and fill out the questionnaire(s) online.
- Chatwin, H., Broadley, M., Hendrieckx, C. et al. (2021) Unmet support needs relating to hypoglycaemia among adults with type 1 diabetes: Results of a multi‐country web‐based qualitative study. Diabetic Medicine. e14727. ISSN 0742-3071