Recommendations for designing genetic test reports to be understood by patients and non-specialists.
Eur J Hum Genet
Springer Science and Business Media LLC
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Farmer, G. D., Gray, H., Chandratillake, G., Raymond, L., & Freeman, A. (2020). Recommendations for designing genetic test reports to be understood by patients and non-specialists.. Eur J Hum Genet, 28 (7), 885-895. https://doi.org/10.1038/s41431-020-0579-y
Funder: David and Claudia Harding Foundation
Patients and non-specialist healthcare professionals are increasingly expected to understand and interpret the results of genetic or genomic testing. These results are currently reported using a variety of templates, containing different amounts, levels, and layouts of information. We set out to establish a set of recommendations for communicating genetic test results to non-expert readers. We employed a qualitative-descriptive study design with user-centred design principles, including a mixture of in-person semi-structured interviews and online questionnaires with patients, healthcare professionals and the general public. The resulting recommendations and example template include providing at-a-glance comprehension of what the test results mean for the patient; suggested next steps; and details of further information and support. Separation and inclusion of technical methodological details enhances non-specialists' understanding, while retaining important information for specialists and the patients' records. The recommendations address the high-level needs of patients and their non-specialist clinicians when receiving genetic test results. These recommendations provide a solid foundation for the major content and structure of reports, and we recommend further engagement with patients and clinicians to tailor reports to specific types of test and results.
Article, /692/700/1719, /706/689/477/2811, article
Wellcome Trust (Wellcome) (105362/Z/14/Z)
External DOI: https://doi.org/10.1038/s41431-020-0579-y
This record's URL: https://www.repository.cam.ac.uk/handle/1810/317159
Attribution 4.0 International (CC BY 4.0)
Licence URL: https://creativecommons.org/licenses/by/4.0/