Life quality remains high after many decades with type 1 diabetes
medwireNews: Many people still have an excellent quality of life after 40 or 50 years of living with type 1 diabetes, show findings from the French JUBILE study.
“The usual sad message perceived by people newly diagnosed and by their relatives [is that] glucose control is poor even with new technologies, acute and chronic complications are persistent, [and] life expectancy is limited,” write the researchers in Diabetic Medicine.
And they caution that their study by design focused on people who remained alive after several decades with the condition, and therefore missed those who struggled with glucose control, had complications, and died young.
However, when the team surveyed people who had been diagnosed with type 1 diabetes in 1970–1972 or earlier, the majority of reported having a good social life, and that they traveled in France and both within and outside of Europe.
“[W]hatever its limitations, the results of the JUBILE study brings a message of hope: living a long, pleasant, fully rewarding life is possible even with type 1 diabetes,” say Jean-Jacques Altman (Hôpital Européen Georges Pompidou et Université Paris‐Descartes, France) and study co-authors.
The 808 people surveyed ranged in age from 41 to 90 years, with a median of 63 years and median diabetes duration of 49 years. The vast majority (82%) were fully autonomous in everyday life, with “many difficulties” reported by just 4.9%, mostly those with diabetes of more than 50 years’ duration.
The researchers say this could be partly due to a protective effect of the relatively low average glycated hemoglobin level in the JUBILE cohort, of 58 mmol/mol (7.4%), in combination with a low rate of smoking, good blood pressure control, and a “relatively low rate of chronic complications.”
Retinopathy was the most common complication, with 54% of respondents having at least moderate retinopathy. But just 27% had albuminuria, with 3% requiring renal transplant or dialysis, and just 32% had a history of cardiac, cerebral, or vascular peripheral disease complications. Indeed, 21% of study participants had no complications.
More than half (56%) remained fully aware of hypoglycemia, with 35% having occasional unawareness and 8.5% permanent unawareness.
Diabetes had impacted on people’s work, with 40% reporting diabetes-related sick leave, although for three-quarters this occurred less than once a year. However, of the 45% who said diabetes had a role in their professional life, 21% actually felt it had a positive impact.
Nearly two-thirds (61%) of participants felt their social life was as good as that of their peers without diabetes, with 59% reporting they still went out regularly, and 82% dining out regularly. A large proportion (66%) still traveled, mostly within France, but with 43% traveling in other European countries and 35% outside of Europe.
Altman and team say that previous studies of people with longstanding type 1 diabetes were based largely on medical charts, with quality of life overlooked.
“This study provides a message of hope for the patients, their family and relatives and the medical teams involved in the care of these patients,” they conclude.
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