Introduction: Although type 1 diabetes (T1D) technology has improved health outcomes for many, some people continue to experience severe hypoglycemic events (SHEs). This study reviews the history of SHEs and impaired awareness of hypoglycemia (IAH) compound risk for future SHEs, and describes the lived experiences of SHEs among adult people with T1D (pwT1D) with recurrent SHEs (≥ 2/year) and IAH who use continuous glucose monitors (CGMs).
Methods: In this online survey study with eligible CGM-users from the T1D Exchange Registry, participants were asked open-ended questions on the impact of SHEs on their lives, then responses were analyzed thematically. Participants reporting ≥ 2 SHEs in the last year and IAH were included in the analytic sample.
Results: Participant (n = 158) responses were coded into 12 thematic categories. A total of 82% of participants reported one or more of the following themes: Emotional and Psychological Impact of SHEs, Social/Relationships Impacts, and Attempts to Prevent and Cope. Specifically, nearly half of participants described the Emotional and Psychological Impact of SHEs (49.4%), with fear around hypoglycemia being especially prominent (e.g., "I worry I might pass out and not wake up…"). Over one-third of participants described impacts of SHEs on their Social Relationships (33.5%), including increased distress from their loved ones. Remaining themes described impacts on numerous other domains of life.
Conclusion: Adult pwT1D using CGMs who had recurrent SHEs and IAH experience substantial burden in their daily lives. New therapeutic options to help this population eliminate SHEs and meet T1D treatment goals would be especially beneficial.
Keywords: Burden of illness; Hypoglycemia; Qualitative research; Quality of life; Severe hypoglycemia; Type 1 diabetes mellitus (T1D); Unawareness.
With modern technological advances in the field of diabetes, more people with type 1 diabetes use devices such as continuous glucose monitors, insulin pumps, and hybrid closed-loop systems to help manage blood sugar levels and lower the risk of dangerous low blood sugar events. These technologies can improve glucose management, but they do not completely eliminate the risk of severe hypoglycemic events. This risk is particularly higher for those with impaired awareness of hypoglycemia, where they do not feel early warning signs of low blood sugar. This study aimed to better understand the lived experiences of adults with type 1 diabetes who use continuous glucose monitors in combination with insulin pumps, hybrid closed-loop systems or multiple daily injections but still experience recurrent severe hypoglycemic events and impaired awareness of hypoglycemia. The study involved an online survey that asked 158 participants to describe the impact of severe hypoglycemic events on their everyday lives. The most common impacts were seen in relationships, attempts to prevent and cope, and emotional or psychological health. Almost half of participants were concerned about severe hypoglycemic events, and over one-third said that these events added worry and stress to their relationships with friends and family. Other areas in life, such as work, independence, and well-being were also disrupted by these occurrences. Even when using advanced glucose management technology, participants felt a heavy burden from diabetes on their daily lives. These findings show that new treatment approaches could benefit the quality of life for this group.
© 2026. The Author(s).