Acceptability, usability and pilot implementation feasibility of the Lynch Choices digital decision support intervention: a preliminary survey evaluation by individuals with Lynch syndrome and their relatives
Year: 2026
Type: article
Abstract: Background Individuals with Lynch syndrome (LS) face high lifetime cancer risks and complex decisions regarding cancer risk management. Lynch Choices TM is a codesigned digital decision support intervention incorporating person-based, theory-informed decision aids to encourage informed, values-based decision-making about taking daily aspirin and gynaecological risk-reducing surgery. This preliminary survey study evaluated proof-of-concept acceptability, usability and pilot feasibility of offering Lynch Choices TM in routine inherited cancer care. Methods A cross-sectional online survey was advertised via a clinical genetics service, patient organisations and social media from January to August 2024. Eligible participants were adults self-identifying with LS or their relatives. The survey collected demographic characteristics, health literacy screening and evaluation of Lynch Choices TM using Likert-scale items and optional free-text comments. Results Eighty-one participants consented; 66 (81%) provided sufficient data for analysis. The overall response rate is unknown due to the unquantifiable number of individuals who viewed recruitment materials though community advertisements. Recruitment exceeded the prespecified target sample size of 50, suggesting willingness to engage with digital decision support outside of clinical encounters. Participants were geographically dispersed across the UK and Ireland with a range of ages. Half reported a personal history of cancer. Health literacy was generally high: 85% reported never needing help reading materials and 79% were extremely confident completing forms. Ratings of Lynch Choices TM were highly favourable: 97% found it helpful, 96% easy to understand, 96% easy to use and 91% would recommend it to others. Free text comments highlighted positive feedback and suggestions for further refinement. Conclusions Lynch Choices TM demonstrated high acceptability and among survey respondents including individuals with LS and their relatives. Findings provide proof-of-concept evidence supporting acceptability, usability and implementation feasibility in an unsupervised, real-world setting. Further evaluation should continue to assess acceptability and usability, particularly among individuals with lower digital confidence or health literacy to avoid widening health disparities. Based on early positive findings, the focus will be on optimising implementation to improve acceptability, inclusion, reach and impact. Future studies will examine effects on knowledge, decisional conflict, psychological outcomes and uptake of cancer prevention strategies. The Lynch Choices TM approach may also be adapted for other inherited cancer predispositions.
Source: BMC Cancer
Authors: Kelly Kohut, Lesley Turner, Tracy Smith, Roberta Horgan, Rebecca Foster, Helen Hanson, Katie Snape, John Burn, Mev Domínguez-Valentin, on behalf of the CanGene-CanVar Patient Reference Panel, Caroline Dale, Sue Duncombe, Rochelle Gold, Sonia Patton, Warren Rook, Richard Stephens, Lesley Turner, Frankie Vale, Helen White, Ivan Woodward, Steve Worrall, Julie Young, on behalf of the International Lynch Decision Aid Expert Partner Panel, 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, 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, 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, Dawn Stacey, 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, Diana Eccles, Claire Foster
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,390
OpenAlex ID: W7225829119
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