Genomic sequencing in oncology: Considerations for integration in routine cancer care

Rahman, Belinda; Lamb, Alastair; Protheroe, Andrew; Shah, Ketan; Solomons, Joyce; Williams, Jonathan; Ormondroyd, Elizabeth

doi:10.1111/ecc.13584

Cited by 4 publications

(2 citation statements)

References 27 publications

(31 reference statements)

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“…A 'good' decision is intricately personal and based on values, priorities, life situation, tolerance for uncertainty and the influence of others. 10 Patient-facing resources for genetic cancer susceptibility are needed to scale-up information provision, due to the ever-increasing amount of genetic testing initiated through universal tumour screening [11][12][13] 'mainstreaming' beyond the traditional clinical genetics setting to point of care testing in oncology clinics [14][15][16][17][18] and additional findings in cancer susceptibility genes from genetic or genomic (whole genome sequencing) testing initiated for non-cancer related indications.…”

Section: Introductionmentioning

confidence: 99%

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

Kohut,

Morton,

Turner

et al. 2024

Psycho-Oncology

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BackgroundResources 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.MethodsPatient/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.ResultsPatient 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.ConclusionsCreating 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.

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Section: Introductionmentioning

confidence: 99%

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

Kohut,

Morton,

Turner

et al. 2024

Psycho-Oncology

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“…Implementation of the National Genomic Test Directory in England, 1 along with growing awareness of the relevance of genomics to cancer treatment, surveillance and risk reduction, [2][3][4] has increased the number of people with potential or confirmed germline pathogenic variants (GPV) in cancer predisposition genes. National testing and clinical management guidelines promote access and equity of care for patients.…”

Section: Introductionmentioning

confidence: 99%

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC)

Kohut,

Speight,

Young

et al. 2023

J Med Genet

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BackgroundTesting for germline pathogenic variants (GPVs) in cancer predisposition genes is increasingly offered as part of routine care for patients with cancer. This is often urgent in oncology clinics due to potential implications on treatment and surgical decisions. This also allows identification of family members who should be offered predictive genetic testing. In the UK, it is common practice for healthcare professionals to provide a patient information leaflet (PIL) at point of care for diagnostic genetic testing in patients with cancer, after results disclosure when a GPV is identified, and for predictive testing of at-risk relatives. Services usually create their own PIL, resulting in duplication of effort and wide variability regarding format, content, signposting and patient input in co-design and evaluation.MethodsRepresentatives from UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar programme and Association of Genetic Nurse Counsellors (AGNC) held a 2-day meeting with the aim of making recommendations for clinical practice regarding co-design of PIL for germline cancer susceptibility genetic testing. Lynch syndrome and haematological malignancies were chosen as exemplar conditions.ResultsMeeting participants included patient representatives including as co-chair, multidisciplinary clinicians and other experts from across the UK. High-level consensus for UK recommendations for clinical practice was reached on several aspects of PIL using digital polling, including that PIL should be offered, accessible, co-designed and evaluated with patients.ConclusionsRecommendations from the meeting are likely to be applicable for PIL co-design for a wide range of germline genetic testing scenarios.

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The future of cancer care in the UK—time for a radical and sustainable National Cancer Plan

Aggarwal,

Choudhury,

Fearnhead

et al. 2024

The Lancet Oncology

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Genomic sequencing in oncology: Considerations for integration in routine cancer care

Cited by 4 publications

References 27 publications

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

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

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC)

The future of cancer care in the UK—time for a radical and sustainable National Cancer Plan

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Genomic sequencing in oncology: Considerations for integration in routine cancer care

Cited by 4 publications

References 27 publications

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

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

Co-design of patient information leaflets for germline predisposition to cancer: recommendations for clinical practice from the UK Cancer Genetics Group (UKCGG), Cancer Research UK (CRUK) funded CanGene-CanVar Programme and the Association of Genetic Nurse Counsellors (AGNC)

The future of cancer care in the UK—time for a radical and sustainable National Cancer Plan

Contact Info

Product

Resources

About

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

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