COPENHAGEN – Parents of children with type 1 diabetes intensely experience the psychological impact of the disease, according to new study findings.
“Both parents and children may need counseling to help them cope with worries associated with the disease,” Douglas C.A. Taylor said at the annual meeting of the European Society for the Study of Diabetes.
The study, supported by Sanofi-Aventis U.S., was part of a baseline assessment of participants who were enrolled in a 24-week randomized clinical trial comparing insulin glargine to twice-daily intermediate-acting insulin, said Mr. Taylor, who is director of health economics and outcomes research for i3 Innovus, in Medford, Mass.
A total of 175 children and adolescents (aged 9–17 years), and one parent of each, answered either the youth or the caregiver modified versions of the Diabetes Quality-of-Life Measure, a self-administered questionnaire gauging life satisfaction, diabetes worry, and diabetes impact.
Life satisfaction questions assessed issues such as disease management, checkups, treatment, flexibility, and family burden of diabetes. Disease impact questions asked about embarrassment related to the disease, interference of the disease on family, school, and leisure. And diabetes worry questions addressed future concerns about the disease impact on education, marriage, job prospects, and future health.
The female parent was the respondent in 86% of the parental surveys.
Overall, parents scored worse (higher) than their children in all domains of the questionnaire. In the domain of life satisfaction, the parents' mean score was 28, compared with a mean score of 27 for the children; however, this difference was not statistically significant. For both the disease impact and the disease worry, the parents' score was 23, compared with 21 for the children, a difference that in both cases was statistically significant.
When the responses were divided by the gender of the children, boys reported better quality of life than girls; yet in the domains of disease impact and disease worry, parents of sons scored worse than those of daughters.
“My personal opinion is that the boys are less worried about the diabetes than the girls, because the boys aren't really thinking in the long term,” he said.