You are here

Article Text

Article menu
Download PDFPDF
ISDM Conference – AMH Randomised Trial Abstract
103 Coproducing a novel online intervention to support shared decision making about cancer genomic testing
  1. Jolyn Hersch1,2,
  2. Phyllis Butow1,
  3. Anastasia Latin1,2,
  4. Lauren O’Hara1,2,
  5. Mandy L Ballinger3,
  6. Rebekah Laidsaar-Powell1,
  7. Nicci Bartley1,
  8. Christine Cockburn4,
  9. Kirsten Mccaffery2,
  10. Ilona Juraskova1
  1. 1School of Psychology, The University of Sydney, Sydney, Australia
  2. 2School of Public Health, The University of Sydney, Sydney, Australia
  3. 3Centre for Molecular Oncology, University of NSW, Sydney, Australia
  4. 4Rare Cancers Australia, Bowral, Australia

Abstract

Introduction Genomic settings are complex and challenging for informed decision making. Partnering with patients and professionals, we aimed to coproduce an innovative intervention for cancer patients to improve decision making and COnsent in GENomic Testing (CoGenT).

Methods Developing the CoGenT intervention, incorporating an online Dynamic Consent Platform (DCP) and Question Prompt List (QPL), involved: i) interviews with 34 stakeholders (cancer patients who were/were not taking part in genomic research, carers, study coordinators, clinicians) to elicit information needs (for QPL) and ‘think-aloud’ feedback on an existing non-cancer DCP; ii) drafting the first QPL about genomic research participation and iii) interviews with 22 stakeholders for feedback, resulting in a prototype DCP to support cancer patients offered genomic testing.

Results Information needs revolved around genomic testing, results/implications, and research participation. Interviews suggested we could enhance QPL utility by providing answers. Views on the DCP highlighted its potential value to inform patients, enable them to indicate preferences, and identify where they need support. Interviews demonstrated the importance of optimizing clarity, accessibility, and engagement in the CoGenT DCP. The QPL includes 29 questions and brief answers on which consent personnel can elaborate if desired. Feedback was positive about the QPL. We refined wording to address participants’ suggestions. The prototype DCP is being iteratively reviewed and revised through further stakeholder interviews.

Discussion The CoGenT intervention is valued by patients, clinicians, and research personnel. This work will facilitate equitable access to cancer genomic research by ensuring consent processes meet the needs of key stakeholders.

Conclusion We will pilot the CoGenT intervention to assess effects on decision-quality outcomes compared with usual consent processes in cancer genomic studies. If results are positive, these evidence-based resources will help establish practices to follow when genomic testing enters routine care, with patients and families well-prepared and supported before, during and after testing.

https://doi.org/10.1136/bmjebm-2024-SDC.102

Statistics from Altmetric.com

    Request Permissions

    If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.