Table 1 A summary of recommendations from the semi-structured interviews that were made independently by a majority of interviewees (n ≥ 5). A full table of all recommendations is in the Supplementary Materials.
From: Recommendations for designing genetic test reports to be understood by patients and non-specialists
Grouping | Recommendation | n | Detail |
|---|---|---|---|
Comm. style | Make reports easier for non-specialists to understand | 9 | Use layman’s terms, avoid jargon, most reports are incomprehensible even to (non-specialist) medical professionals |
Structure & appearance | Consider the structure and appearance of the document | 9 | The structure and appearance of the document affect understanding, and ease of reading |
Structure & appearance | Make the result prominent | 9 | The result of the test should stand out and be easily found within the document |
Structure & appearance | Keep technical test details separate | 9 | Put technical details such as test methodology into a separate section |
Content | Provide an ‘actions to be taken’ section | 8 | Include a section of recommendations and concrete next steps |
Content | Provide sources of further information and support | 8 | Provide sources of authoritative information, especially on the condition, communicating the result to others and obtaining support including genetic counselling and peer support |
Content | Provide a ‘what this result means’ section | 7 | Explain what the implications of the result are (diagnosis, risks, treatment, family) |
Content | Ensure the result wording is unambiguous | 6 | Make the result as unambiguous as possible. Use plain language |
Structure & appearance | Use colour to make things clear and easy to read | 6 | Colours help with understanding and appearance of document |
Structure & appearance | Keep reports as short and simple as possible | 6 | Avoid dense blocks of text and lengthy reports as much as possible |
Structure & appearance | Don’t dilute the main message | 5 | Don’t intersperse key messages with genetics explainers or technical details |
Comm. style | Provide patients with all information | 5 | Patients should receive all of the information resulting from the test including technical details |
Structure & appearance | Present result in neutral terms | 5 | Don’t use ‘positive’ or ‘negative’, or colour-code results. Aim rather for a statement of fact. |