Burden of Treatment in Children and Adolescents With Type 1 Diabetes Evaluated by Focus Groups

Abstract

Objective: Taking into account the burden of treatment (BOT) should favor psychological fulfillment and adherence of young patients to treatment, which largely determines the quality of type 1 diabetes (T1D) control. To identify BOT components, the Ariane study carried out a focus group survey among 84 children and adolescents with T1D aged 12.6 ± 3.7 years. Research Design and Methods: Focus groups were organized in 10 pediatric diabetes centers, a qualitative research method that brings together a small group of patients to express their perception of treatment and answer questions in a moderated nonmedical setting. Results: A total of 3640 verbatim voicing children's concerns were recorded, transcribed, and analyzed by five working groups composed of pediatric diabetologists, specialized nurses, adults with childhood-onset T1D, and two groups from the civil society. Each group studied the verbatim separately to extract 24 main concerns summarizing BOT. These concerns fell into two distinct categories: concerns about physical, material, and care organization (N = 15) or psychological concerns (N = 9). A BOT score summed the number of concerns of each patient. The mean BOT score was 7.4 ± 3.3 (range 1-18). Gender had a prominent influence on concerns (p=0.002). Conclusions: The identification of common concerns expressed through focus groups provides a new tool for estimation of BOT in childhood T1D.

Keywords: adolescents; burden of treatment; children; focus groups; type 1 diabetes.

Figure 1

The 24 concerns derived from the analysis of focus group verbatims, presented in descending order of frequency. For each concern, the percentage of patients is noted in brackets. Gray lines are concerns linked to the direct physical consequences of the treatment. White lines are concerns related to psychological aspects in the broad sense.

Figure 2

(A) Percent of patients having expressed a given concern. Concerns are presented in increasing order from Q1 to Q24. For example, 74.5% of girls expressed Q1 vs 30.4% of boys. (B) Statistically significant differences (p  < 0.05) between categories.