Development of the Knowledge of Genome Sequencing (KOGS) questionnaire

Saskia C Sanderson; Bao Sheng Loe; Maddie Freeman; Camila Gabriel; Danielle C Stevenson; Chris Gibbons; Lyn Chitty; Celine Lewis

doi:10.1016/j.pec.2018.07.011

Development of the Knowledge of Genome Sequencing (KOGS) questionnaire

Patient Educ Couns. 2018 Nov;101(11):1966-1972. doi: 10.1016/j.pec.2018.07.011. Epub 2018 Jul 11.

Authors

Saskia C Sanderson¹, Bao Sheng Loe², Maddie Freeman³, Camila Gabriel⁴, Danielle C Stevenson⁵, Chris Gibbons⁶, Lyn Chitty⁷, Celine Lewis⁷

Affiliations

¹ North East Thames Regional Genetics Services, Great Ormond Street Hospital, London, UK; UCL Great Ormond Street Institute of Child Health, UK; Department of Behavioural Science and Health, University College London, London, UK. Electronic address: saskia.sanderson@ucl.ac.uk.
² The Psychometrics Centre, University of Cambridge, Cambridge, UK.
³ Department of Behavioural Science and Health, University College London, London, UK.
⁴ Center for Bioethics, Harvard Medical School, Boston, USA.
⁵ North East Thames Regional Genetics Services, Great Ormond Street Hospital, London, UK.
⁶ Patient Reported Outcomes, Value and Experience (PROVE) Center, Brigham and Women's Hospital, Boston, USA; Department of Surgery, Harvard Medical School, Boston, USA.
⁷ North East Thames Regional Genetics Services, Great Ormond Street Hospital, London, UK; UCL Great Ormond Street Institute of Child Health, UK.

PMID: 30031711
DOI: 10.1016/j.pec.2018.07.011

Abstract

Objective: Whole-genome sequencing is being implemented in research and clinical care, yet tools to assess patients' knowledge are lacking. Our aim was to develop a robust measure of whole-genome sequencing knowledge suitable for patients and other stakeholders including research participants, public, students, and healthcare professionals.

Methods: An initial set of 17 items was developed via an iterative process including literature review, expert consultation, focus groups, and cognitive interviews with patients, and then administered to 243 individuals. We used exploratory factor analysis and item-response theory to confirm the psychometric suitability of the candidate items for assessing whole-genome sequencing knowledge.

Results: There was a strong main component after removing 5 items with low factor loadings. Item and scale homogeneity was achieved using Mokken scale analysis. Three further items were removed because they were misfits, inverse duplicates or resulted in local dependency. The remaining nine items fitted the two-parameter logistic IRT model which achieved excellent fit to the observed data. Cronbach's alpha was 0.79 indicating acceptable reliability.

Conclusion: The KOGS, developed using a rigorous psychometric approach, is a brief and reliable tool.

Practice implications: The KOGS may prove useful for researchers and healthcare professionals using whole-genome sequencing with patients and other stakeholders.

Keywords: Item response theory; Measurement instrument; Patient education; Patient knowledge; Whole-genome sequencing.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Factor Analysis, Statistical
Female
Health Knowledge, Attitudes, Practice*
Humans
Male
Patient Education as Topic / methods*
Psychometrics / instrumentation
Reproducibility of Results
Surveys and Questionnaires / standards*
Whole Genome Sequencing*

Abstract

Publication types

MeSH terms

Grants and funding