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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)

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)
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)

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.

Clinical Decision-Making, Genetics, Genomics, Information Science, Patient Care
0022-2593
Kohut, Kelly Elizabeth
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Speight, Beverley
d74b96de-a585-4bdb-b906-423dd0de7608
Young, Julie
117d1947-a6d0-400e-bd39-a04227ffd573
Way, Rosalind
b5e9c317-c145-474f-89f6-52823f16c89a
Wiggins, Jennifer
4b979ae9-20fb-421f-9373-e9dfb74e6c30
Monje-Garcia, Laura
dd115ae9-911e-4b2f-9644-cda80f27c15c
Eccles, Diana
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Eccles, Diana
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Turner, Lesley
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Snape, Katie
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Hanson, Helen
c2c514c2-de84-4a31-80ec-6b03a67db570
Morton, Katherine
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Foster, Becky
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The CanGene‐CanVar Patient Reference Panel
Kohut, Kelly Elizabeth
62c06d25-2359-4a2a-a155-a54a8937fd8b
Speight, Beverley
d74b96de-a585-4bdb-b906-423dd0de7608
Young, Julie
117d1947-a6d0-400e-bd39-a04227ffd573
Way, Rosalind
b5e9c317-c145-474f-89f6-52823f16c89a
Wiggins, Jennifer
4b979ae9-20fb-421f-9373-e9dfb74e6c30
Monje-Garcia, Laura
dd115ae9-911e-4b2f-9644-cda80f27c15c
Eccles, Diana
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Eccles, Diana
10d58972-8d94-4e46-b0c1-7cb17ea694c1
Turner, Lesley
9ce55e58-e149-4768-8618-388c3c9b7dae
Snape, Katie
c266b215-eb29-49ff-9062-0be5c97a934b
Hanson, Helen
c2c514c2-de84-4a31-80ec-6b03a67db570
Morton, Katherine
6fa41cd3-ba4d-476c-9020-b8ef93c7ade7
Foster, Becky
74f75d51-0db1-4044-bd77-3ab87e6846ff

Kohut, Kelly Elizabeth, Speight, Beverley, Way, Rosalind, Wiggins, Jennifer, Monje-Garcia, Laura, Eccles, Diana, Foster, Claire, Eccles, Diana, Turner, Lesley, Snape, Katie and Hanson, Helen , The CanGene‐CanVar Patient Reference Panel (2023) 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). Journal of Medical Genetics, [jmg-2023-109440]. (doi:10.1136/jmg-2023-109440). (In Press)

Record type: Article

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.

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Accepted/In Press date: 27 August 2023
Additional Information: Funding Information: HH, KK, KS, Bethany Torr and RW are supported by funding from Cancer Research UK Catalyst Award CanGene-CanVar (C61296/A27223). Patient reimbursement expenses were supported by the UK Cancer Genetics Group. Publisher Copyright: © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY. Published by BMJ.
Keywords: Clinical Decision-Making, Genetics, Genomics, Information Science, Patient Care

Identifiers

Local EPrints ID: 484497
URI: http://eprints.soton.ac.uk/id/eprint/484497
ISSN: 0022-2593
PURE UUID: 93f3266d-5bd5-402b-9d3a-01d84aa414e5
ORCID for Diana Eccles: ORCID iD orcid.org/0000-0002-9935-3169
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378
ORCID for Katherine Morton: ORCID iD orcid.org/0000-0002-6674-0314
ORCID for Becky Foster: ORCID iD orcid.org/0000-0002-9320-4269

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Date deposited: 16 Nov 2023 14:29
Last modified: 21 Sep 2024 01:49

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Contributors

Author: Kelly Elizabeth Kohut
Author: Beverley Speight
Author: Julie Young
Author: Rosalind Way
Author: Jennifer Wiggins
Author: Laura Monje-Garcia
Author: Diana Eccles ORCID iD
Author: Claire Foster ORCID iD
Author: Diana Eccles
Author: Lesley Turner
Author: Katie Snape
Author: Helen Hanson
Author: Becky Foster ORCID iD
Corporate Author: The CanGene‐CanVar Patient Reference Panel

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