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Development of a measure of genome sequencing knowledge for young people: The kids-KOGS

Celine Lewis1,2, Bao S Loe3, Chris Sidey-Gibbons4

  • 1North East Thames Regional Genetics Services, Great Ormond Street Hospital NHS Foundation Trust, London, UK.

Clinical Genetics
|July 20, 2019
PubMed

Insights

A new tool, the kids-KOGS, effectively measures knowledge of genome sequencing (GS) in children aged 11-15. This reliable assessment aids researchers and healthcare providers in understanding pediatric patient comprehension of GS.

Area of Science:

  • Genetics and Genomics
  • Pediatric Medicine
  • Psychometrics

Background:

  • Genome sequencing (GS) is vital for diagnosing rare pediatric diseases.
  • Currently, no validated tools exist to assess children's understanding of GS.
  • Developing such a tool is crucial for effective communication and education in pediatric settings.

Purpose of the Study:

  • To develop and validate a reliable knowledge measure for genome sequencing (GS) in children aged 11-15.
  • The kids-KOGS aims to assess comprehension suitable for both clinical and educational contexts.
  • To establish the psychometric properties of the newly developed kids-KOGS tool.

Main Methods:

  • An iterative process created draft true/false items for the kids-KOGS.
  • 539 UK school pupils (ages 11-15) participated in the study.
  • Item-response theory and Cronbach's alpha were used for psychometric validation.

Main Results:

  • The kids-KOGS demonstrated excellent internal consistency (Cronbach's alpha = 0.84).
  • All 10 items performed well under the two-parameter logistic model, with no misfits.
  • The mean kids-KOGS score was 4.24 (SD ± 2.49), with age positively correlating with knowledge.

Conclusions:

  • The kids-KOGS is a short, reliable, and psychometrically sound tool for assessing pediatric knowledge of genome sequencing.
  • This measure can be utilized by researchers and healthcare professionals working with pediatric patients undergoing GS.
  • Further validation in clinical settings is recommended to broaden its application.

Keywords:
item response theorymeasurement instrumentpatient educationpatient knowledgewhole genome sequencingyoung people

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