Codesign of Lynch Choices: using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways
Codesign of Lynch Choices: using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways
Background: genetic testing has increased without corresponding growth in genetics/oncology workforces. Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA have been developed for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap in care, partnering with patients from the earliest stages of project conception.
Methods: we codesigned Lynch Choices, a PtDA (interactive, personalised website/booklet) for families with Lynch Syndrome. This will later be adapted for other conditions. In addition to a Patient Reference Panel, we purposively invited a large, international stakeholder panel including patient groups, charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to identify barriers and facilitators and maximise uptake potential. Patient/stakeholder feedback was incorporated in a transparent Table of Changes using the Person-Based Approach. Patient funding was provided, and a publication policy agreed with stakeholders. Additional grant funding facilitated partnerships with underserved communities.
Conclusions: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its challenges and resource limitations, is needed to optimise benefit to patients and clinicians. Implementation science methods should be applied from the earliest stages of codesign of a PtDA, involving patients who will use the resource and a wide range of stakeholders. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset.
cancer genetics, codesign, decision support intervention, implementation science, patient decision aid, psychosocial support, translation of research to clinical practice
Kohut, Kelly
62c06d25-2359-4a2a-a155-a54a8937fd8b
Morton, Kate
6fa41cd3-ba4d-476c-9020-b8ef93c7ade7
Turner, Lesley
9bb34823-a649-4371-b378-2d8b640387c0
Foster, Rebecca
74f75d51-0db1-4044-bd77-3ab87e6846ff
Eccles, Diana
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
on behalf of the CanGene-CanVar Patient Reference Panel
on behalf of the International Lynch Decision Aid Stakeholder Panel
19 March 2024
Kohut, Kelly
62c06d25-2359-4a2a-a155-a54a8937fd8b
Morton, Kate
6fa41cd3-ba4d-476c-9020-b8ef93c7ade7
Turner, Lesley
9bb34823-a649-4371-b378-2d8b640387c0
Foster, Rebecca
74f75d51-0db1-4044-bd77-3ab87e6846ff
Eccles, Diana
5b59bc73-11c9-4cf0-a9d5-7a8e523eee23
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Kohut, Kelly, Morton, Kate, Turner, Lesley, Foster, Rebecca, Eccles, Diana and Foster, Claire
,
on behalf of the CanGene-CanVar Patient Reference Panel and on behalf of the International Lynch Decision Aid Stakeholder Panel
(2024)
Codesign of Lynch Choices: using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways.
Psycho-Oncology, 33 (3), [e6330].
(doi:10.1002/pon.6330).
Abstract
Background: genetic testing has increased without corresponding growth in genetics/oncology workforces. Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA have been developed for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap in care, partnering with patients from the earliest stages of project conception.
Methods: we codesigned Lynch Choices, a PtDA (interactive, personalised website/booklet) for families with Lynch Syndrome. This will later be adapted for other conditions. In addition to a Patient Reference Panel, we purposively invited a large, international stakeholder panel including patient groups, charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to identify barriers and facilitators and maximise uptake potential. Patient/stakeholder feedback was incorporated in a transparent Table of Changes using the Person-Based Approach. Patient funding was provided, and a publication policy agreed with stakeholders. Additional grant funding facilitated partnerships with underserved communities.
Conclusions: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its challenges and resource limitations, is needed to optimise benefit to patients and clinicians. Implementation science methods should be applied from the earliest stages of codesign of a PtDA, involving patients who will use the resource and a wide range of stakeholders. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset.
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Psycho-Oncology - 2024 - Kohut - Codesign of Lynch ChoicesTM Using implementation science to create a clinically
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Accepted/In Press date: 8 March 2024
e-pub ahead of print date: 19 March 2024
Published date: 19 March 2024
Keywords:
cancer genetics, codesign, decision support intervention, implementation science, patient decision aid, psychosocial support, translation of research to clinical practice
Identifiers
Local EPrints ID: 488096
URI: http://eprints.soton.ac.uk/id/eprint/488096
ISSN: 1057-9249
PURE UUID: 6635f78f-cf51-4177-8af7-9fdf2e2fe963
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Date deposited: 15 Mar 2024 17:38
Last modified: 14 May 2024 01:39
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Contributors
Author:
Kelly Kohut
Author:
Lesley Turner
Corporate Author: on behalf of the CanGene-CanVar Patient Reference Panel
Corporate Author: on behalf of the International Lynch Decision Aid Stakeholder Panel
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