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The development of the DISCO-RC for measuring children's discomfort during research procedures
Mira S Staphorst1, Reinier Timman2, Jan Passchier3
1Department of Psychiatry, section of Medical Psychology and Psychotherapy, Erasmus University Medical Center, Room: Na-2013, PO box 2040, 3000 CA, Rotterdam, The Netherlands.
Insights
A new questionnaire, the DISCO-RC (DISCOmfort in Research with Children), was developed to measure children's discomfort during medical research. This tool provides evidence-based data for ethics committees evaluating paediatric research protocols.
Area of Science:
- Pediatric Research
- Clinical Trials Methodology
- Psychometrics
Background:
- Lack of standardized instruments to measure children's self-reported discomfort in clinical research.
- Need for evidence-based data to support ethics committee evaluations of discomfort in study protocols.
- Development of a child-friendly instrument is crucial for accurate assessment.
Purpose of the Study:
- To develop and validate the DISCO-RC (DISCOmfort in Research with Children) questionnaire.
- To create a generic, short, and child-friendly instrument for assessing discomfort in pediatric research.
- To provide an evidence-based tool for evaluating discomfort in clinical research involving children.
Main Methods:
- Literature search on children's self-reported discomfort and interviews with 46 children (aged 6-18) to identify key discomforts and response preferences.
- Consultation with nine pediatric research professionals for content and feasibility input.
- Drafting, pretesting with 25 children, and psychometric evaluation (validity, reliability, internal consistency) of the DISCO-RC.
Main Results:
- Identified key discomforts in pediatric research, including pain and boredom, with a preference for a 5-point Likert scale.
- Developed a short, digital instrument measuring various discomforts, confirmed feasible and face-valid through pretesting.
- Achieved acceptable convergent validity and test-retest reliability, with expected low internal consistency.
Conclusions:
- The DISCO-RC is a practical, psychometrically sound instrument for measuring children's discomfort during research procedures.
- The questionnaire facilitates evidence-based evaluation of discomfort in pediatric research.
- Recommended as a standard component in pediatric research studies to enhance ethical review.
Background:
There is a need for data on children's self-reported discomfort in clinical research, helping ethics committees to make their evaluation of discomfort described in study protocols evidence-based. Since there is no appropriate instrument to measure children's discomfort during medical research procedures, we aimed to develop a generic, short and child-friendly instrument: the DISCO-RC questionnaire (DISCOmfort in Research with Children).
Methods:
This article describes the six steps of the development of the DISCO-RC. First, we updated a literature search on children's self-reported discomfort in clinical research to get insight in what words are used to measure discomfort (step 1). Subsequently, we interviewed 46 children (6-18 years) participating in research to get insight into important forms of discomfort for children (step 2), and asked them about their preferred response option for measuring discomfort (step 3). Next, we consulted nine paediatric research professionals from various backgrounds for input on the content and feasibility of the DISCO-RC (step 4). Based on the previous steps, we developed a draft version of the DISCO-RC, which we discussed with the professionals. The DISCO-RC was then pretested in 25 children to ensure face-validity from the child's perspective and feasibility (step 5). Finally, validity, reliability and internal consistency were tested (step 6).
Results:
The search-update revealed several words used for measuring discomfort in research (e.g. 'worries', 'unpleasantness'). The interviews gave insight into important forms of discomfort for children in research (e.g. 'pain', 'boredom'). Children preferred a 5-point Likert scale as response option for the DISCO-RC. The experts recommended a short, digital instrument involving different forms of discomfort, and measuring discomfort of individual research procedures. Pretesting of the DISCO-RC resulted in a few layout changes, and feedback from the children confirmed the feasibility of the DISCO-RC. Convergent validity and test-retest reliability were acceptable. Internal consistency based on item-rest correlations and Cronbach's alpha were low, as expected.
Conclusions:
The DISCO-RC is a generic, practical and psychometrically sound instrument for measuring children's discomfort during research procedures. It contributes to make the evaluation of discomfort in paediatric research evidence-based. Therefore, we recommend including the DISCO-RC as standard component of paediatric research studies.
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