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/topic	Recommendations for clinical practice It should be best practice for PIL:	Suggestions from meeting discussion
Diagnostic genetic testing	To be offered to people with cancer or a pre-malignant condition being offered genetic/genomic testing	Need less detail pre-results
Pathogenic gene variant	To be offered to people who have a pathogenic variant in a cancer susceptibility gene	Mostly generic PIL+personalised letter
Predictive genetic testing	To 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 format	To contain subheadings to make finding information easier	Should stand out Eg, bold
	Subheadings to be presented in the form of questions
	To include pictures to help explain key concepts
PIL content	To mention psychological aspects/feelings related to having genetic testing
	To include links to relevant charities	Check trusted
	To include links to relevant patient peer support groups
	To include information about family planning/reproductive options, where relevant	Check 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 insurance	See 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 specialists	Precise 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 explained	Aim 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 reports	Other 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 condition	Cost for this
	To consider language and aim to be as inclusive as possible for all patients, including those with protected characteristics	Co-design with these patients
	To have a date issued and date due for review	Secure funding
Risk communication	To 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 charts	Icon arrays preferred
	To include contact details for relevant healthcare professionals/services (eg, genetics, oncology, haematology)
Communicating uncertainty	To explain uncertainty, including where it comes from (such as lack of scientific knowledge, not enough families to study) and how this might make people feel	Area for further research

See online supplemental table for more details about discussion and recommendations from meeting participants.