Table 1.

Illustrative quotes from clinician respondents regarding the use of “family reports”.

Use during result disclosure

Much better than scribbling things on paper in front of the family, or trying to guide them through the complex language of laboratory reports.

Genetics is so scientific and abstract, having a physical item in their language, clearly spelt out and “bespoke’” is so powerful. Thanks for this!!

For some families it works best as a take-home record at the end of a results consultation, however others seem to follow the discussion better if they can glance down at the report.

Very helpful to be able to leave the family with a clear, concise report after what is often a very complex appointment in a high stress situation for the family

For informative results, the family report can be useful during the results disclosure session as a visual guide for families to follow the discussion. For uninformative results, the family report is more useful as a take-home record at the end of the consultation.

Distribution

…very useful in helping other specialists who were not at the result disclosure meeting to be able to understand the results

[I would distribute to] all involved clinicians as I think everyone struggles to understand the main report. Assists in communication and care coordination

… helpful for a brief summary of results for non-genetics health professionals, easy to access in patient record

Use beyond the acute pediatric setting

I believe it should be the basis of all future genetics consultations … as a supplement to genetics letters and information giving

I would also use the format to guide a simple language family report in the future outside of acute care. I had thought about that but not done it yet!

I have taken inspiration from these reports to layout reports for other research projects. They have not been used as a direct template, but the flavor of the report has been helpful to generate other reports

I think these should be adopted much more broadly as they really help families to understand and retain the information in a way that is practical to them.

Would be helpful for [molecular genetics] labs to incorporate family reports, so that a family report is routinely generated as part of genomic testing (similarly, so that clinicians can edit as appropriate)