Kohut, K;
Speight, B;
Young, J;
Way, R;
Wiggins, J;
Monje-Garcia, L;
Eccles, DM;
Foster, C;
Turner, L;
Snape, K;
et al.
Kohut, K; Speight, B; Young, J; Way, R; Wiggins, J; Monje-Garcia, L; Eccles, DM; Foster, C; Turner, L; Snape, K; Hanson, H; CanGene-CanVar Patient Reference Panel; Consensus Meeting Participants
(2024)
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).
J Med Genet, 61 (2).
pp. 142-149.
ISSN 1468-6244
https://doi.org/10.1136/jmg-2023-109440
SGUL Authors: Snape, Katie Mairwen Greenwood
Abstract
BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Recommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.
Item Type: |
Article
|
Additional Information: |
© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/
This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. |
Keywords: |
Clinical Decision-Making, Genetics, Genomics, Information Science, Patient Care, Humans, Counselors, Genetic Testing, Neoplasms, Genetic Predisposition to Disease, United Kingdom, Germ Cells, CanGene-CanVar Patient Reference Panel, Consensus Meeting Participants, Germ Cells, Humans, Neoplasms, Genetic Predisposition to Disease, Genetic Testing, United Kingdom, Counselors, Patient Care, Genetics, Genomics, Clinical Decision-Making, Information Science, 06 Biological Sciences, 11 Medical and Health Sciences, Genetics & Heredity |
SGUL Research Institute / Research Centre: |
Academic Structure > Institute of Medical & Biomedical Education (IMBE) |
Journal or Publication Title: |
J Med Genet |
ISSN: |
1468-6244 |
Language: |
eng |
Dates: |
Date | Event |
---|
19 January 2024 | Published Online | 27 August 2023 | Accepted |
|
Publisher License: |
Creative Commons: Attribution 4.0 |
Projects: |
|
PubMed ID: |
38050080 |
Web of Science ID: |
WOS:001165141900011 |
![](http://static.pubmed.gov/portal/portal3rc.fcgi/2745237/img/27842) |
Go to PubMed abstract |
URI: |
https://openaccess.sgul.ac.uk/id/eprint/116576 |
Publisher's version: |
https://doi.org/10.1136/jmg-2023-109440 |
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