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

TL;DR

This study identifies the treatment burdens faced by children and teens with type 1 diabetes through focus groups, revealing key concerns that could improve treatment adherence and quality of care.

Contribution

The study introduces a new method to quantify treatment burden using focus group-derived concerns specific to pediatric type 1 diabetes patients.

Findings

3640 verbatim statements were analyzed to extract 24 main concerns about treatment burden.

Concerns were categorized into physical/material/care organization (15) and psychological (9) types.

Gender significantly influenced the concerns expressed (p=0.002).

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.

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