Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: a systematic review of patient impact and experience

Frontiers in Health Services

Health Services

Kate Morton¹  Lesley Turner¹  Chloe Grimmett¹  Claire Foster¹  Kelly Kohut²  Vicky Fenerty³  Diana M. Eccles⁴  Jonathan Shepherd⁵  Lois Woods⁵ 

[1] Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, United Kingdom;Centre for Psychosocial Research in Cancer: CentRIC, School of Health Sciences, University of Southampton, Southampton, United Kingdom;Clinical Genetics, St George's University Hospitals NHS Foundation Trust, London, United Kingdom;Engagement Services, University of Southampton Library, University of Southampton, Southampton, United Kingdom;Faculty of Medicine, University of Southampton, Southampton, United Kingdom;Southampton Health Technology Assessments Centre, University of Southampton, Southampton, United Kingdom;

关键词: cancer genetics;    genetic counselling;    patient decision aid;    shared decision-making;    decision support;   

DOI  :  10.3389/frhs.2023.1092816

 received in 2022-11-18, accepted in 2023-04-26,  发布年份 2023

来源: Frontiers

【 摘 要 】

BackgroundPatients with genetic cancer susceptibility are presented with complex management options involving difficult decisions, for example about genetic testing, treatment, screening and risk-reducing surgery/medications. This review sought to explore the experience of patients using decision support resources in this context, and the impact on decision-making outcomes.MethodsSystematic review of quantitative, qualitative and mixed-methods studies involving adults with or without cancer who used a decision support resource pre- or post-genetic test for any cancer susceptibility. To gather a broad view of existing resources and gaps for development, digital or paper-based patient resources were included and not limited to decision aids. Narrative synthesis was used to summarise patient impact and experience.ResultsThirty-six publications describing 27 resources were included. Heterogeneity of resources and outcome measurements highlighted the multiple modes of resource delivery and personal tailoring acceptable to and valued by patients. Impact on cognitive, emotional, and behavioural outcomes was mixed, but mainly positive. Findings suggested clear potential for quality patient-facing resources to be acceptable and useful.ConclusionsDecision support resources about genetic cancer susceptibility are likely useful to support decision-making, but should be co-designed with patients according to evidence-based frameworks. More research is needed to study impact and outcomes, particularly in terms of longer term follow-up to identify whether patients follow through on decisions and whether any increased distress is transient. Innovative, streamlined resources are needed to scale up delivery of genetic cancer susceptibility testing for patients with cancer in mainstream oncology clinics. Tailored patient-facing decision aids should also be made available to patients identified as carriers of a pathogenic gene variant that increases future cancer risks, to complement traditional genetic counselling.Systematic Review Registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020220460, identifier: CRD42020220460.

【 授权许可】

Unknown   
© 2023 Kohut, Morton, Turner, Shepherd, Fenerty, Woods, Grimmett, Eccles and Foster.