Social Network to Monitor Hypoglycemia
According to researchers, “Hypoglycemia is a serious sequela of diabetes treatment not tracked by formal health surveillance. Associated harms span vehicle crashes and injuries, missed work, debilitating worry, medical complications, and death.”
Serious adverse drug reports to the FDA are often associated with insulin-related adverse events, and hypothermia associated with insulin accounts for one-third of all emergency department (ED) visits that are medication related.
To date, the incidence of hypoglycemia has been identified primarily through ED visit surveillance or trial-related adverse event reporting. Noting that “reports about events below the threshold for an ED visit and reports from community-based patient samples are lacking,” researchers recently conducted a survey of members of an international online diabetes social network to examine experiences of hypoglycemia and related harms. Results of the survey were reported in JAMA Internal Medicine [2013;173(5):345-351].
The researchers utilized a software application (app) to poll members of the TuDiabetes.org network from March 2011 through April 2012. Eligibility criteria were TuDiabetes membership, ≥13 years of age, a self-reported diagnosis of diabetes, ability to read and write in English, and Internet access. Of 2827 users of the app, 687 opted in to the volunteer sample, a response rate of 24.3%. The final sample included 613 respondents who reported using insulin.
Primary outcome measures were (1) frequency of having a low glucose value in the past 2 weeks and (2) episodes of severe hypoglycemia in the past 12 months. For those respondents reporting recent and/or severe hypoglycemia, outcome measures included lifetime experience of vehicle crashes or several medical injuries, daily debilitating worry, and withdrawal from driving, exercise, sex, and going outside of the home to avoid hypoglycemia and consequences. Secondary outcomes included measures of research engagement.
Of the 613 respondents in the final sample, 90.5% were white, 86.8% lived in the United States, and 59.9% were female. The majority (88.3%) reported having type 1 diabetes mellitus/latent autoimmune diabetes in adults (TID/LADA). Age ranged from 14 to 81 years (mean 43 years; median 44 years) and reported duration of disease ranged from 0 to 67 years (mean 19 years; median 17 years).
The reported number of recent lows ranged from 0 to 75 (mean 6.2; median 4); 53.2% of those with TID/LADA and 18.2% of those with type 2 diabetes (T2D) reported experiencing >4 lows in the past 2 weeks. Only 9% of the sample reported no lows in the past 2 weeks.
Severe lows in the past 12 months were less common: 70.8% of the sample reported none and 29.2% reported at least 1 (30.3% of those with TID/LADA and 20.8% of those with T2D).
Of the total sample, 38.3% reported ≤4 recent lows and no past-year severe lows. One third of the sample reported >4 recent lows and no past-year severe lows; 12.6% reported ≤4 recent lows and ≥1 past-year severe low; and 16.6% reported >4 recent lows and at least 1 past-year severe event.
In the survey responses regarding harms, 54.2% of respondents reported multiple harms. The most frequently reported harm in the total sample was avoidance of exercise (54.0%), followed by daily debilitating worry about hypoglycemia (45.8%). Among those reporting >4 recent lows or a past-year severe low, those harms were also the most commonly reported.
Finally, the researchers reported that engagement among the respondents was high: 96.6% of the sample permitted recontact for research and 31.7% posted personal study data on their app profile page.
In conclusion, the researchers stated, “Participatory surveillance of hypoglycemia in an online diabetes social network enables characterization of patient-centered harms in a community sample and bidirectional communication with affected persons, augmenting traditional surveillance.”
