Table 2

Recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and the Association of Genetic Nurse Counsellors (AGNC) on co-design of patient information leaflets (PILs) for germline predisposition to cancer

PIL indication/topicRecommendations for clinical practice
It should be best practice for PIL:
Suggestions from meeting discussion
Diagnostic genetic testingTo be offered to people with cancer or a pre-malignant condition being offered genetic/genomic testingNeed less detail pre-results
Pathogenic gene variantTo be offered to people who have a pathogenic variant in a cancer susceptibility geneMostly generic PIL+personalised letter
Predictive genetic testingTo be offered to people being offered predictive testing (in addition to a copy of their clinic letter)At-risk relatives should be referred for genetic counselling
PIL formatTo contain subheadings to make finding information easierShould stand out
Eg, bold
Subheadings to be presented in the form of questions
To include pictures to help explain key concepts
PIL contentTo mention psychological aspects/feelings related to having genetic testing
To include links to relevant charitiesCheck trusted
To include links to relevant patient peer support groups
To include information about family planning/reproductive options, where relevantCheck phrasing with patients
About genetic testing to present all the choices, including to do nothing/not have genetic testing
About genetic testing to mention rules about genetic testing and insuranceSee ABI Code
About genetic testing to mention what might happen after results
For people with a pathogenic gene variant to mention that more personalised information can be provided during an appointment with genetics or other specialistsPrecise estimates might not be available
To be checked using a readability tool such as SMOG with the aim of achieving a reading level of 9–11 years. Medical terms may be temporarily removed, then added back into the PIL, making sure they are clearly explainedAim for national reading age
To include simple explanations for any medical jargon or complex language
To include the term pathogenic gene variant to match the term on genetic test reportsOther descriptions can be included
To be translated into the patient’s first language, if resources are available
To be reviewed by patients with lived experience of the conditionCost for this
To consider language and aim to be as inclusive as possible for all patients, including those with protected characteristicsCo-design with these patients
To have a date issued and date due for reviewSecure funding
Risk communicationTo include information about the chances of getting cancer/pre-malignant conditions, where relevant
To present chances for people to get cancer/premalignant conditions with numbers as well as words (eg, showing % or a x/10 or x/100 people, not just saying ‘high’ or ‘low’ chance)
To include visual presentation of the chances of getting cancer/premalignant conditions, for example, icon arrays (repeated shapes showing people affected in a different colour), graphs, bar chartsIcon arrays preferred
To include contact details for relevant healthcare professionals/services (eg, genetics, oncology, haematology)
Communicating uncertaintyTo explain uncertainty, including where it comes from (such as lack of scientific knowledge, not enough families to study) and how this might make people feelArea for further research
  • See online supplemental table for more details about discussion and recommendations from meeting participants.