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

James Abe, Jennifer M. Lobo, Daniel Trifiletti, Timothy N. Showalter

Research output: Contribution to journalArticle

1 Citation (Scopus)

Abstract

Background: Despite 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. Methods: We 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. Results: The 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. Conclusions: A 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.

Original languageEnglish (US)
Article number128
JournalBMC Medical Informatics and Decision Making
Volume17
Issue number1
DOIs
StatePublished - Aug 24 2017
Externally publishedYes

Fingerprint

Prostatectomy
Genomics
Radiotherapy
Decision Support Techniques
Neoplasms
Decision Making
Therapeutics
Comorbidity
Prostatic Neoplasms
Acquired Immunodeficiency Syndrome
Communication
Recurrence
Informatics
Quality-Adjusted Life Years
Privacy
Appointments and Schedules
Industry

Keywords

  • Adjuvant radiation therapy
  • Genomic-driven medicine
  • Genomics
  • Personalized medicine
  • Prostate cancer
  • Stakeholder engagement

ASJC Scopus subject areas

  • Health Policy
  • Health Informatics

Cite this

Providing guidance for genomics-based cancer treatment decisions : Insights from stakeholder engagement for post-prostatectomy radiation therapy. / Abe, James; Lobo, Jennifer M.; Trifiletti, Daniel; Showalter, Timothy N.

In: BMC Medical Informatics and Decision Making, Vol. 17, No. 1, 128, 24.08.2017.

Research output: Contribution to journalArticle

@article{e3ede8cbb3db431c804f3babcafb55ec,
title = "Providing guidance for genomics-based cancer treatment decisions: Insights from stakeholder engagement for post-prostatectomy radiation therapy",
abstract = "Background: Despite 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. Methods: We 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. Results: The 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. Conclusions: A 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.",
keywords = "Adjuvant radiation therapy, Genomic-driven medicine, Genomics, Personalized medicine, Prostate cancer, Stakeholder engagement",
author = "James Abe and Lobo, {Jennifer M.} and Daniel Trifiletti and Showalter, {Timothy N.}",
year = "2017",
month = "8",
day = "24",
doi = "10.1186/s12911-017-0526-1",
language = "English (US)",
volume = "17",
journal = "BMC Medical Informatics and Decision Making",
issn = "1472-6947",
publisher = "BioMed Central",
number = "1",

}

TY - JOUR

T1 - Providing guidance for genomics-based cancer treatment decisions

T2 - Insights from stakeholder engagement for post-prostatectomy radiation therapy

AU - Abe, James

AU - Lobo, Jennifer M.

AU - Trifiletti, Daniel

AU - Showalter, Timothy N.

PY - 2017/8/24

Y1 - 2017/8/24

N2 - Background: Despite 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. Methods: We 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. Results: The 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. Conclusions: A 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.

AB - Background: Despite 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. Methods: We 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. Results: The 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. Conclusions: A 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.

KW - Adjuvant radiation therapy

KW - Genomic-driven medicine

KW - Genomics

KW - Personalized medicine

KW - Prostate cancer

KW - Stakeholder engagement

UR - http://www.scopus.com/inward/record.url?scp=85028310203&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85028310203&partnerID=8YFLogxK

U2 - 10.1186/s12911-017-0526-1

DO - 10.1186/s12911-017-0526-1

M3 - Article

C2 - 28836985

AN - SCOPUS:85028310203

VL - 17

JO - BMC Medical Informatics and Decision Making

JF - BMC Medical Informatics and Decision Making

SN - 1472-6947

IS - 1

M1 - 128

ER -