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In diabetes device era, parents still report substantial type 1 burden

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August 17, 2017

Despite the availability of advanced diabetes technology, parents of young children with type 1 diabetes continue to report substantial burdens and negative family impact stemming from the disease, according to findings published in the Journal of Diabetes Science and Technology.

“Diabetes technologies have improved substantially in the past several decades, with tools such as smart insulin pumps with bolus calculators and continuous glucose monitors,” Kara R. Harrington, PhD, a clinical and research fellow with the Joslin Diabetes Center in Boston, and colleagues wrote. “Along with these technical advancements come new challenges and possible burdens, especially for young children and their families. ... Thus, it is important to ascertain typical burdens and stresses of parents of young children with diabetes in the contemporary diabetes management era. It is also important to understand how the burdens reported by parents are impacted by use or nonuse of different diabetes technologies, as well as by other demographic factors, such as socioeconomic status.”

Harrington and colleagues analyzed data from parents of 597 children with type 1 diabetes enrolled in the T1D Exchange Clinic Registry since February 2015 and aged 7 years or younger (mean age of children, 5 years; mean diabetes duration, 2.4 years). Insulin pump and CGM use, as well as the child’s most recent HbA1c, were reported by parents and confirmed by clinic report. Parents completed two surveys — the Problem Areas in Diabetes Survey-Parent Revised (PAID-PR) version and the Family Impact Survey (FIS). Scores were tabulated overall and stratified by age group (aged 4 years or younger, aged 4 to 6 years and aged 6 to 7 years). Researchers used linear regression models to determine the association of scores with HbA1c.

Within the cohort, mean HbA1c was 8.2%; 31% of children used CGM and 58% used insulin pump therapy.

Across age groups, researchers observed no significant between-group differences in type and frequency of burdens reported. Overall, they wrote, the greatest burden reported by parents was worrying about their child having hypoglycemia (74%), followed by worrying about the future and the possibility of serious complications for their child (70%) and feeling upset when their child’s diabetes management is “off track” (61%).

Other concerns, the researchers wrote, included worrying that their child will not be taken care of when away from home (57%) and feeling upset when their child’s blood glucose is out of range (54%).

In assessing FIS scores, the family impact burden most reported by parents was diminished amount or quality of sleep for family members (59%), followed by the need for flexible working arrangements to help care for their child (55%), they wrote.

The researchers noted that only 5% of parents reported feeling discouraged about their child’s diabetes treatment plan, suggesting adequate support from their multidisciplinary treatment teams.

“Intervention components need to provide strategies, skills and support integrated into routine care to support parental quality of life related to diabetes management,” they wrote. “These interventions must also provide guidance to parents implementing advanced diabetes treatments and technologies. Such interventions may have a positive impact on parents and ultimately on diabetes outcomes for young children with type 1 diabetes.” – by Regina Schaffer

Disclosures: The Leona M. and Harry B. Helmsley Charitable Trust supported this study. The authors report no relevant financial disclosures.