Codesign of Lynch Choices^TM: Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways

TY - JOUR

T1 - Codesign of Lynch ChoicesTM

T2 - Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways

AU - Kohut, Kelly

AU - Morton, Kate

AU - Turner, Lesley

AU - Foster, Rebecca

AU - Eccles, Diana

AU - Foster, Claire

N1 - Funding Information: Thank you to all the patient partners who contributed their time and shared their lived experiences and views to optimise Lynch Choices. Funding was provided by Cancer Research UK Catalyst Award CanGene‐CanVar [C61296/A27223] and The University of Southampton: Faculty of Environmental and Life Sciences Higher Education Innovation Fund and Public Engagement in Research Unit. Funding Information: Thank you to all the patient partners who contributed their time and shared their lived experiences and views to optimise Lynch ChoicesTM. Funding was provided by Cancer Research UK Catalyst Award CanGene-CanVar [C61296/A27223] and The University of Southampton: Faculty of Environmental and Life Sciences Higher Education Innovation Fund and Public Engagement in Research Unit. CanGene-CanVar Patient Reference Panel consortium author list: Caroline Dale, Sue Duncombe, Rochelle Gold, Sonia Patton, Warren Rook, Richard Stephens, Lesley Turner, Frankie Vale, Helen White, Ivan Woodward, Steve Worrall, Julie Young. International Lynch Decision Aid Stakeholder Panel consortium author list: Munaza Ahmed, Lyndsy Ambler, Antonis Antoniou, Stephanie Archer, Ruth Armstrong, Elizabeth Bancroft, Kristine Barlow-Stewart, Lily Barnett, Marion Bartlett, Julian Barwell, Dany Bell, Cheryl Berlin, Felicity Blair, Matilda Bradford, John Burn, Sarah Cable, Melissa Cambell-Kelly, Dharmisha Chauhan, Ruth Cleaver, Beth Coad, Gaya Connolly, Gillian Crawford, Emma Crosbie, Victoria Cuthill, Tabib Dabir, Mev Dominguez Valentin, Karina Dahl Steffensen, Eleanor Davies, Glyn Elwyn, Mary Jane Esplen, D Gareth Evans, Pia Fabricius, Andrea Forman, Kaisa Fritzell, Claire Giffney, Joana Gomes, Rebecca Hall, Helen Hanson, Menna Hawkins, Deborah Holliday, Roberta Horgan, Karen Hurley, Margaret James, Ros Jewell, Siobhan John, Victoria Kiesel, Anna Koziel, Anjana Kulkarni, Fiona Lalloo, Helen Liggett, Aela Limbu, Kate Lippiett, Anne Lowry, Manami Matsukawa, Ranjit Manchanda, Tracie Miles, Shakira Milton, Pål Møller, Kevin Monahan, Laura Monje-Garcia, Gabriela Moslein, Alex Murray, Jennie Murray, Kai-Ren Ong, Christine Patch, Anbu Paramasivam, Alison Pope, Sarah Pugh, Imran Rafi, Gabriel Recchia, Nicola Reents, Neil Ryan, Sibel Saya, Raza Sayyed, Salma Shickh, Toni Seppala, Lucy Side, Katie Snape, Sian Smith, Tracy Smith, Barbara Stayner, Eriko Takamine, Katrina Tatton-Brown, Helle Vendel Petersen, Robert Volk, Karen Westaway, Nikki Warner, Jennifer Wiggins, Lisa Wilde, Jennet Williams, Catherine Willis, Elizabeth Winchester, Emma Woodward, Alice Youngs. Publisher Copyright: © 2024 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

PY - 2024/3/19

Y1 - 2024/3/19

N2 - Background: 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 exist for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap, partnering with patients to codesign Lynch ChoicesTM, a PtDA website for families with Lynch Syndrome. In addition to a Patient Reference Panel, we purposively invited an international stakeholder panel including charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to optimise translation of research findings to improve care. Methods: Patient/stakeholder suggestions were incorporated in a transparent Table of Changes and prioritised using the Person-Based Approach throughout planning and codesign of Lynch ChoicesTM. An interactive stakeholder meeting was convened to identify barriers and facilitators to clinical implementation of the PtDA. Results: Patient and stakeholder partnerships drove the direction of the research throughout codesign, resulting in several iterative refinements to the PtDA prior to roll out including the addition of illustrations/videos, clearer presentation of cancer risks and increased accessibility for lower literacy. Barriers and facilitators identified from stakeholders were used to create an implementation process map. Conclusions: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its resource limitations, is needed to optimise benefit to patients and clinicians. 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 to translate research findings into clinical practice.

AB - Background: 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 exist for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap, partnering with patients to codesign Lynch ChoicesTM, a PtDA website for families with Lynch Syndrome. In addition to a Patient Reference Panel, we purposively invited an international stakeholder panel including charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to optimise translation of research findings to improve care. Methods: Patient/stakeholder suggestions were incorporated in a transparent Table of Changes and prioritised using the Person-Based Approach throughout planning and codesign of Lynch ChoicesTM. An interactive stakeholder meeting was convened to identify barriers and facilitators to clinical implementation of the PtDA. Results: Patient and stakeholder partnerships drove the direction of the research throughout codesign, resulting in several iterative refinements to the PtDA prior to roll out including the addition of illustrations/videos, clearer presentation of cancer risks and increased accessibility for lower literacy. Barriers and facilitators identified from stakeholders were used to create an implementation process map. Conclusions: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its resource limitations, is needed to optimise benefit to patients and clinicians. 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 to translate research findings into clinical practice.

KW - cancer genetics

KW - codesign

KW - decision support intervention

KW - implementation science

KW - patient decision aid

KW - psychosocial support

KW - translation of research to clinical practice

UR - http://www.scopus.com/inward/record.url?scp=85188305014&partnerID=8YFLogxK

U2 - 10.1002/pon.6330

DO - 10.1002/pon.6330

M3 - Article

C2 - 38502032

AN - SCOPUS:85188305014

SN - 1057-9249

VL - 33

JO - Psycho-Oncology

JF - Psycho-Oncology

IS - 3

M1 - e6330

ER -