The latest CanGene-CanVar publications comes from Work Package 4: "Co- design of patient information leaflets for germline predisposition to cancer: 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)" by Kelly Kohut, Beverley Speight, Julie Young, Rosalind Way, Jennifer Wiggins, Laura Monje- Garcia, Diana M Eccles, Claire Foster, Lesley Turner, Katie Snape, Helen Hanson, on behalf of the CanGene- CanVar Patient Reference Panel, on behalf of the Consensus Meeting Participants.
Testing for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. The results of these tests can have implications on treatment and surgical decisions along with allowing family members to be identified and offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for diagnostic genetic testing of at-risk relatives. Services usually create their our PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation. Representatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions.
Meeting participants included patient representatives acting as co-chair, multidisciplinary clinicians and other exports from across the UK. High level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients. Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.
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Written by Ruth McCarthy, Research Administrator at The Institute of Cancer Reserach
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