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

Abstract

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.

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

“…Despite their potential usefulness and acceptability to patients and clinicians, a recent systematic literature review of decision support resources for genetic testing or cancer risk management did not identify any PtDA for patients with a genetic cancer susceptibility that were suitable for clinical implementation 19 . Most of the published resources were focussed on breast and ovarian cancer susceptibility due to a pathogenic variant (mutation) in the BRCA1 and BRCA2 genes with few resources dedicated to other conditions such as Lynch syndrome (‘Lynch’).…”

“…Our research team (KK, KM, LT, RF, DE, CF) chose to use Lynch as an exemplar condition to codesign an interactive, digital PtDA as part of a 5‐year research programme funded by the charity Cancer Research UK, called CanGene‐CanVar (https://cangene-canvaruk.org). The decision to focus on Lynch was based on the gap identified through our systematic literature review 19 and feedback from patients, 36 combined with the timely NHS initiative to increase awareness, screening and education. The PtDA template will later be adapted for other genetic cancer susceptibilities 36 and potentially non‐cancer related genetic conditions.…”

‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website

“…A large cochrane review found that PtDA increased knowledge and confidence compared with usual care 22 . Our research group (K. K., K. M., L. T., C. F., D. E.) conducted a systematic literature review 23 of decision‐support interventions for genetic testing or care of people with a genetic cancer susceptibility. This identified the potential for these resources to be useful and valued by patients and HCP, however, there was a lack of patient codesign.…”