{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,8]],"date-time":"2026-01-08T19:11:43Z","timestamp":1767899503022,"version":"3.49.0"},"reference-count":41,"publisher":"BMJ","issue":"2","license":[{"start":{"date-parts":[[2023,11,30]],"date-time":"2023-11-30T00:00:00Z","timestamp":1701302400000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100000289","name":"Cancer Research UK","doi-asserted-by":"publisher","award":["C61296\/A27223"],"award-info":[{"award-number":["C61296\/A27223"]}],"id":[{"id":"10.13039\/501100000289","id-type":"DOI","asserted-by":"publisher"}]},{"name":"UK Cancer Genetics Group","award":["patient reimbursement expenses"],"award-info":[{"award-number":["patient reimbursement expenses"]}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["J Med Genet"],"accepted":{"date-parts":[[2023,8,27]]},"published-print":{"date-parts":[[2024,2]]},"abstract":"<jats:sec>\n                  <jats:title>Background<\/jats:title>\n                  <jats:p>Testing for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be 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 predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Meeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts 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.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/jmg-2023-109440","type":"journal-article","created":{"date-parts":[[2023,11,30]],"date-time":"2023-11-30T22:45:21Z","timestamp":1701384321000},"page":"142-149","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":2,"title":["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)"],"prefix":"10.1136","volume":"61","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9852-2872","authenticated-orcid":false,"given":"Kelly","family":"Kohut","sequence":"first","affiliation":[{"name":"Centre for Psychosocial Research in Cancer: CentRIC, University of Southampton, Southampton, UK"},{"name":"Clinical Genetics, St George's University Hospitals NHS Foundation Trust, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Beverley","family":"Speight","sequence":"additional","affiliation":[{"name":"Clinical Genetics, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie","family":"Young","sequence":"additional","affiliation":[{"name":"Patient Contributor, Southampton, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rosalind","family":"Way","sequence":"additional","affiliation":[{"name":"Division of Genetics and Epidemiology, Institute of Cancer Research, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Wiggins","sequence":"additional","affiliation":[{"name":"Cancer Genetics, The Royal Marsden NHS Foundation Trust, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Monje-Garcia","sequence":"additional","affiliation":[{"name":"The St Mark's Centre for Familial Intestinal Cancer, London North West University Healthcare NHS Trust, London, UK"},{"name":"Imperial College London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9935-3169","authenticated-orcid":false,"given":"Diana M","family":"Eccles","sequence":"additional","affiliation":[{"name":"Faculty of Medicine, University of Southampton, Southampton, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Claire","family":"Foster","sequence":"additional","affiliation":[{"name":"Centre for Psychosocial Research in Cancer: CentRIC, University of Southampton, Southampton, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lesley","family":"Turner","sequence":"additional","affiliation":[{"name":"Patient Contributor, Southampton, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katie","family":"Snape","sequence":"additional","affiliation":[{"name":"Clinical Genetics, St George's University Hospitals NHS Foundation Trust, London, UK"},{"name":"St George's University of London, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Helen","family":"Hanson","sequence":"additional","affiliation":[{"name":"Clinical Genetics, St George's University Hospitals NHS Foundation Trust, London, UK"},{"name":"Division of Genetics and Epidemiology, Institute of Cancer Research, London, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"name":"on behalf of the CanGene-CanVar Patient Reference Panel","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2023,11,30]]},"reference":[{"key":"2025101713215462000_61.2.142.1","doi-asserted-by":"publisher","DOI":"10.7861\/clinmedicine.19-4-273"},{"key":"2025101713215462000_61.2.142.2","article-title":"Genomic sequencing in oncology: considerations for integration in routine cancer care","volume":"31","author":"Rahman","year":"2022","journal-title":"Eur J Cancer Care"},{"key":"2025101713215462000_61.2.142.3","doi-asserted-by":"crossref","first-page":"604","DOI":"10.1038\/s41431-022-01065-2","article-title":"Participant experiences of genome sequencing for rare diseases in the 100,000 Genomes project: a mixed methods study","volume":"30","author":"Peter","year":"2022","journal-title":"Eur J Hum Genet"},{"key":"2025101713215462000_61.2.142.4","unstructured":"Group HGS . Building on our inheritance: Genomic technology in Healthcare. 2012."},{"key":"2025101713215462000_61.2.142.5","doi-asserted-by":"crossref","first-page":"135","DOI":"10.1136\/jmedgenet-2020-106876","article-title":"UKCGG consensus group guidelines for the management of patients with constitutional Tp53 pathogenic variants","volume":"58","author":"Hanson","year":"2020","journal-title":"J Med Genet"},{"key":"2025101713215462000_61.2.142.6","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1111\/bjh.18675","article-title":"Germline predisposition to haematological malignancies: best practice consensus guidelines from the UK cancer Genetics group (UKCGG), Cangene-Canvar and the NHS England haematological oncology working group","volume":"201","author":"Speight","year":"2023","journal-title":"Br J Haematol"},{"key":"2025101713215462000_61.2.142.7","doi-asserted-by":"publisher","DOI":"10.1136\/gutjnl-2019-319915"},{"key":"2025101713215462000_61.2.142.8","doi-asserted-by":"crossref","first-page":"35","DOI":"10.1111\/bjh.18682","article-title":"Management of patients with Germline predisposition to haematological malignancies considered for allogeneic blood and marrow transplantation: best practice consensus guidelines from the UK cancer Genetics group (UKCGG), Cangene-Canvar, NHS England Genomic laboratory Hub (GLH) haematological malignancies working group and the British society of blood and marrow transplantation and cellular therapy (BSBMTCT)","volume":"201","author":"Clark","year":"2023","journal-title":"Br J Haematol"},{"key":"2025101713215462000_61.2.142.9","doi-asserted-by":"publisher","DOI":"10.1136\/jmg-2022-108898"},{"key":"2025101713215462000_61.2.142.10","unstructured":"Confederation N , ed. Our Inheritance, Our Future: Realising the Potential of Genetics in the NHS (DOH White Paper). 2003."},{"key":"2025101713215462000_61.2.142.11","doi-asserted-by":"publisher","DOI":"10.7861\/clinmedicine.14-4-436"},{"key":"2025101713215462000_61.2.142.12","doi-asserted-by":"crossref","first-page":"3390","DOI":"10.1038\/s41598-020-60149-5","article-title":"\u201cOncologist-led BRCA 'Mainstreaming' in the ovarian cancer clinic: a study of 255 patients and its impact on their management\u201d","volume":"10","author":"Rumford","year":"2020","journal-title":"Sci Rep"},{"key":"2025101713215462000_61.2.142.13","doi-asserted-by":"crossref","first-page":"293","DOI":"10.1007\/s10689-019-00122-y","article-title":"Moving into the mainstream: Healthcare professionals' views of implementing treatment focussed genetic testing in breast cancer care","volume":"18","author":"Hallowell","year":"2019","journal-title":"Fam Cancer"},{"key":"2025101713215462000_61.2.142.14","doi-asserted-by":"crossref","DOI":"10.1093\/bjsopen\/zrad023","article-title":"Hereditary colorectal, gastric, and Pancreatic cancer: comprehensive review","volume":"7","author":"Sepp\u00e4l\u00e4","year":"2023","journal-title":"BJS Open"},{"key":"2025101713215462000_61.2.142.15","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-019-0596-9"},{"key":"2025101713215462000_61.2.142.16","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1913948"},{"key":"2025101713215462000_61.2.142.17","doi-asserted-by":"publisher","DOI":"10.1038\/s41591-022-01746-x"},{"key":"2025101713215462000_61.2.142.18","unstructured":"Royal college of physicians British society for Genomic medicine . Guidance on the use of genetic and Genomic information in the clinic. 3RD edition. London Report of the Joint Committee on Genomics in Medicine; 2019."},{"key":"2025101713215462000_61.2.142.19","unstructured":"England NHS . NHS Genomic medicine service. 2021. Available: https:\/\/www.england.nhs.uk\/genomics\/nhs-genomic-med-service"},{"key":"2025101713215462000_61.2.142.20","unstructured":"Topol E . The Topol review: preparing the Healthcare workforce to deliver the Digital future. 2019."},{"key":"2025101713215462000_61.2.142.21","unstructured":"HoCSaT C . Genomics and Genome editing in the NHS. House of Commons, 2018."},{"key":"2025101713215462000_61.2.142.22","unstructured":"Agency M . Best practice guidance on patient information leaflets. Department of Health and Social Care 2020."},{"key":"2025101713215462000_61.2.142.23","unstructured":"Medicines M . Always Read the Leaflet: Getting the best information with every medicine. 2005."},{"key":"2025101713215462000_61.2.142.24","unstructured":"Medicines adherence: involving patients in decisions about prescribed medicines and supporting Adherance. National Institute of Health and Care Excellence 2009."},{"key":"2025101713215462000_61.2.142.25","unstructured":"Health and social care act section 250. 2012."},{"key":"2025101713215462000_61.2.142.26","unstructured":"England N . NHS England. The Information Standard for Health and Care Information Production Quality Statements,"},{"key":"2025101713215462000_61.2.142.27","unstructured":"England N . Working in partnership with people and communities: statutory guidance. Care DoHS 2022."},{"key":"2025101713215462000_61.2.142.28","doi-asserted-by":"publisher","DOI":"10.1136\/dtb.2019.000008"},{"key":"2025101713215462000_61.2.142.29","doi-asserted-by":"crossref","first-page":"240","DOI":"10.1038\/s41436-019-0663-2","article-title":"Creating genetic reports that are understood by Nonspecialists:a case study","volume":"22","author":"Recchia","year":"2020","journal-title":"Genet Med"},{"key":"2025101713215462000_61.2.142.30","doi-asserted-by":"crossref","first-page":"1309","DOI":"10.1038\/s41431-022-01199-3","article-title":"Research participants: critical friends, agents for change","volume":"30","author":"Hastings Ward","year":"2022","journal-title":"Eur J Hum Genet"},{"key":"2025101713215462000_61.2.142.31","unstructured":"England NHS . Implementing Lynch syndrome testing and surveillance pathways: a Handbook to support local systems. 2017."},{"key":"2025101713215462000_61.2.142.32","unstructured":"Excellence NIfHaC . DG27] Molecular testing strategies for Lynch syndrome in people with colorectal cancer. 2017."},{"key":"2025101713215462000_61.2.142.33","unstructured":"Excellence NIfHaC . DG42] Testing strategies for Lynch syndrome in people with endometrial cancer. 2020."},{"key":"2025101713215462000_61.2.142.34","unstructured":"Excellence NIfHaC . Lynch syndrome: should I take aspirin to reduce my chance of getting bowel cancer? patient decision aid. 2020."},{"key":"2025101713215462000_61.2.142.35","doi-asserted-by":"crossref","first-page":"740334","DOI":"10.3389\/fphar.2021.740334","article-title":"Factors that facilitate and hinder the comprehension of patient information leaflets (Pils): A brief Scoping review","volume":"12","author":"Medina-C\u00f3rdoba","year":"2021","journal-title":"Front Pharmacol"},{"key":"2025101713215462000_61.2.142.36","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2296-15-163"},{"key":"2025101713215462000_61.2.142.37","doi-asserted-by":"publisher","DOI":"10.3399\/bjgp15X685285"},{"key":"2025101713215462000_61.2.142.38","doi-asserted-by":"crossref","first-page":"684","DOI":"10.1111\/ced.15012","article-title":"Readability assessment of the British Association of Dermatologists' patient information leaflets","volume":"47","author":"Hunt","year":"2022","journal-title":"Clin Exp Dermatol"},{"key":"2025101713215462000_61.2.142.39","doi-asserted-by":"crossref","first-page":"115","DOI":"10.1071\/AH21083","article-title":"Patient satisfaction with a consumer Codesigned lower limb Cellulitis leaflet","volume":"46","author":"Bishop","year":"2022","journal-title":"Aust Health Rev"},{"key":"2025101713215462000_61.2.142.40","doi-asserted-by":"publisher","DOI":"10.1007\/s11096-014-9975-0"},{"key":"2025101713215462000_61.2.142.41","doi-asserted-by":"publisher","DOI":"10.1016\/j.sapharm.2016.10.006"}],"container-title":["Journal of Medical Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/jmg-2023-109440","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,17]],"date-time":"2025-10-17T20:22:08Z","timestamp":1760732528000},"score":1,"resource":{"primary":{"URL":"https:\/\/jmg.bmj.com\/lookup\/doi\/10.1136\/jmg-2023-109440"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,11,30]]},"references-count":41,"journal-issue":{"issue":"2","published-online":{"date-parts":[[2024,1,19]]},"published-print":{"date-parts":[[2024,2]]}},"alternative-id":["10.1136\/jmg-2023-109440"],"URL":"https:\/\/doi.org\/10.1136\/jmg-2023-109440","relation":{},"ISSN":["0022-2593","1468-6244"],"issn-type":[{"value":"0022-2593","type":"print"},{"value":"1468-6244","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,11,30]]}}}