Providing guidance for genomics-based cancer treatment decisions: insights from stakeholder engagement for post-prostatectomy radiation therapy

BMC Medical Informatics and Decision Making

Research Article

Jennifer M. Lobo¹  Timothy N. Showalter²  James Abe²  Daniel M. Trifiletti² 

[1] Department of Public Health Sciences, University of Virginia School of Medicine, Charlottesville, VA, USA;Department of Radiation Oncology, University of Virginia School of Medicine, 1240 Lee Street, Box 800383, 22908, Charlottesville, VA, USA;

关键词: Genomics;    Genomic-driven medicine;    Personalized medicine;    Prostate cancer;    Adjuvant radiation therapy;    Stakeholder engagement;   

DOI  :  10.1186/s12911-017-0526-1

 received in 2017-01-27, accepted in 2017-08-18,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundDespite the emergence of genomics-based risk prediction tools in oncology, there is not yet an established framework for communication of test results to cancer patients to support shared decision-making. We report findings from a stakeholder engagement program that aimed to develop a framework for using Markov models with individualized model inputs, including genomics-based estimates of cancer recurrence probability, to generate personalized decision aids for prostate cancer patients faced with radiation therapy treatment decisions after prostatectomy.MethodsWe engaged a total of 22 stakeholders, including: prostate cancer patients, urological surgeons, radiation oncologists, genomic testing industry representatives, and biomedical informatics faculty. Slides were at each meeting to provide background information regarding the analytical framework. Participants were invited to provide feedback during the meeting, including revising the overall project aims. Stakeholder meeting content was reviewed and summarized by stakeholder group and by theme.ResultsThe majority of stakeholder suggestions focused on aspects of decision aid design and formatting. Stakeholders were enthusiastic about the potential value of using decision analysis modeling with personalized model inputs for cancer recurrence risk, as well as competing risks from age and comorbidities, to generate a patient-centered tool to assist decision-making. Stakeholders did not view privacy considerations as a major barrier to the proposed decision aid program. A common theme was that decision aids should be portable across multiple platforms (electronic and paper), should allow for interaction by the user to adjust model inputs iteratively, and available to patients both before and during consult appointments. Emphasis was placed on the challenge of explaining the model’s composite result of quality-adjusted life years.ConclusionsA range of stakeholders provided valuable insights regarding the design of a personalized decision aid program, based upon Markov modeling with individualized model inputs, to provide a patient-centered framework to support for genomic-based treatment decisions for cancer patients. The guidance provided by our stakeholders may be broadly applicable to the communication of genomic test results to patients in a patient-centered fashion that supports effective shared decision-making that represents a spectrum of personal factors such as age, medical comorbidities, and individual priorities and values.

【 授权许可】

CC BY   
© The Author(s). 2017