A systematic review of instruments measuring the division of care responsibilities between children with type 1 diabetes and their parents

J. Aalders*, G.M. Nefs, E.E. Hartman, L.A. Nguyen, Per Winterdijk, E. van Mil, H.J. Aanstoot, Frans Pouwer

*Corresponding author for this work

Research output: Contribution to journalReview articlepeer-review

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Abstract

Background
The division of care responsibilities between parents and children with type 1 diabetes, and an optimal transfer of responsibilities from parent to child over time are assumed to be key for optimal diabetes outcomes during childhood and adolescence. However, an overview of instruments assessing this division as well as their psychometric qualities is currently lacking.

Objective
The study aims to 1) identify all existing instruments, 2) evaluate their psychometric properties, and 3) provide an overview of scoring methods.

Methods
Pubmed and PsycINFO were searched using a priori-defined search string. Peerreviewed studies in English using an instrument assessing the division of diabetes care responsibilities between children (6-18 years) and parents were included. In total, 84 of 725 articles qualified, covering 62 unique samples.

Results
Thirteen questionnaires were identified. The Diabetes Family Responsibility Questionnaire (DFRQ) was most frequently used across studies. Instructions, content and number of tasks, response options, and scoring methods varied across questionnaires. Recent studies often adapted questionnaires, contributing to the heterogeneity across measures. Overall, reporting and quality of psychometric properties was suboptimal.

Conclusion
The division of diabetes care responsibilities can be operationalized with various instruments, each having its strengths and weaknesses but all with limited psychometric support. To measure the division of diabetes care responsibilities more adequately, an updated version of the popular DFRQ or a new scale needs to be developed and evaluated.
Original languageEnglish
Pages (from-to)59-93
JournalCurrent Diabetes Reviews
Volume19
Issue number5
DOIs
Publication statusPublished - 2023

Keywords

  • DFRQ
  • Type 1 diabetes mellitus
  • division of diabetes
  • glycemic outcomes
  • heterogeneity
  • psychometrics

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