Diabetes-specific health-related quality of life is closely linked to glucose control in youth with type 1 diabetes, new international research suggests.
That strong association and its potential mitigation by factors associated with better glycemic control point to opportunities for proactive intervention among vulnerable children, teens, and young adults, according to Barbara J Anderson, PhD, professor of pediatrics at Baylor College of Medicine, Houston, Texas, and colleagues in their paper published online May 25 in Diabetes Care.
The data come from the global, observational, cross-sectional TEENs study of 5887 participants with type 1 diabetes aged 8 to 25 years from 20 countries on five continents and in 219 centers worldwide. The relationship between HbA1cand diabetes-specific health-related quality of life (D-HRQOL) was consistent around the world, Dr Anderson told Medscape Medical News.
“It’s a bidirectional relationship. They’re so closely related it doesn’t really matter which came first” in terms of intervention, she noted.
The findings suggest that it’s important to ask about quality-of-life issues and to refer patients and families to mental-health specialists when necessary. In particular, clinicians should be sure that patients and their families understand that type 1 diabetes is difficult to control and they shouldn’t expect perfect blood sugars all the time.
“The medical community often forgets to tell people that at diagnosis.…Families leave the hospital thinking if they do all the things they’re told they’re going to get stable blood sugars,” Dr Anderson commented.
Females, Young Adults at High Risk
In the study, the proportions of subjects achieving age-appropriate HbA1ctargets were just 31.9% of 8- to 12-year-olds, 29.1% of 13- to 18-year-olds, and 18.4% of the young-adult (19- to 25-year-old) group.
The 19- to 25-year-old group reported lower scores on the 100-point D-HRQOL scale compared with the younger two age groups. And across all ages, the females reported lower D-HRQOL than did the males (P < .001). (All were reported by the youths themselves, not their parents.)
Overall, D-HRQOL was significantly and inversely related to HbA1c: The lower the HbA1c, the better the D-HRQOL, with scores of 71.5, 68.4, and 64.8 for HbA1c values < 7.5%, 7.5 to 9%, and > 9%, respectively.
Gender differences in quality-of-life reporting are consistent across different chronic medical conditions and even among healthy young people, Dr Anderson pointed out. “Girls consistently report lower quality of life than boys do. I think it speaks to the difficulty of being an adolescent female and all the things they’re forced to deal with at that age that boys aren’t.”
With diabetes, she added, females may be more prone to viewing themselves as “damaged” and attempt to hide or ignore their condition. Moreover, hormonal changes during puberty may affect blood glucose levels in females more than in males.
Given all that, “Maybe we should be proactive and put resources into interventions for young females that might pay off later in terms of quality of life and glycemic outcomes,” she suggested.
The findings of worse quality of life and glycemic control in the young-adult age group is a major concern, she said, given that this group can fall through the cracks as they transition from pediatric to adult care. The handling of that situation is highly variable around the country — some pediatric centers will keep patients into their early 20s and provide transition assistance, while others strictly cut people off when they turn 18.
In any case, that group also merits heightened attention, she said.
Family Conflict Predicts Risk
Among all the age groups, family conflict appeared to be very common and to underlie diminished D-HRQOL. Overall, 46% of the participants reported experiencing family conflict over monitoring blood glucose, and 39% over giving insulin.
The presence of diabetes-specific family conflict over blood glucose monitoring was significantly related to poorer D-HRQOL (P < .001). Also, if a parent or participant had to reduce or stop working because of diabetes, the participant reported lower D-HRQOL (P < .001).
“We know that families play a large role in terms of diabetes management of young children and of teenagers. To find this in such a large global study was really important because family conflict is one of the potentially modifiable variables that we have as clinicians,” Dr Anderson said.
“If my patient is from a single-parent family or their father is in jail, I can’t change those things. But if there’s a lot of family tension and conflict around diabetes, I know how to help people struggling with that.”
Specifically, she said, “It’s so easy to blame and shame a young person when they have a high number on the glucose meter, rather than to say, ‘Isn’t it great you checked your blood sugar? Now we know what to do about it.’ Parents don’t mean to do this, it’s just that they’re anxious.”
She advises physicians to simply ask families whether they’re having arguments related to diabetes. “I think the more we know this, the more we can try to be proactive.…We can say it’s really important not to fight about blood glucose levels. They’re not 100% under your child’s control.”
Another important question is whether fear of hypoglycemia is leading the youngster to deliberately run blood sugars higher, a common problem. “If we learn about these things, we can intervene,” she noted.
And if the problems seem beyond the physician’s control, “this might be the time to refer to a psychologist or social worker.”
Behaviors Associated With Better Control
The study also identified three specific and potentially modifiable behaviors linked to better D-HRQOL: carbohydrate counting compared with avoiding simple sugars (P < .001), more frequent daily blood glucose monitoring (3 to 7 vs 0 to 2 days per week, P < .001), and 30 minutes or more of daily physical activity (P < .001).
While access to test strips may be limited — even in wealthy countries — exercise and carb counting can always be advised, she noted.
In 2012, when this study was done, use of continuous glucose monitoring (CGM) was quite low in all of the regions studied, even in the United States and Western Europe. The recent uptick in use of CGM as well as the newer closed-loop technologies may help improve type 1 diabetes control overall, but for teens this can be a double-edged sword.
“Some teens won’t wear the devices and view them as part of the disease burden. This may be hard for physicians who are on the technology bandwagon, but as a psychologist, I can say that kids shouldn’t be forced,” Dr Anderson advised.
Overall, “this is pointing out that it isn’t the insulin algorithm that controls glycemic outcomes, it’s everything in the person’s life.”
Funding for the TEENs study was provided by Sanofi Diabetes. Dr Anderson reports participation in advisory boards for Sanofi, research support from the National Institutes of Health, JDRF, the Leona M and Harry B Helmsley Charitable Trust, and consultancy for Sanofi. Disclosures for the coauthors are listed in the paper.