Understanding decisions to participate in genomic medicine in children's cancer care: A comparison of what influences parents, health care providers, and the general community

Richard De Abreu Lourenco; Maria C McCarthy; Laura J McMillan; Michael Sullivan; Lyn Gillam

doi:10.1002/pbc.29101

Understanding decisions to participate in genomic medicine in children's cancer care: A comparison of what influences parents, health care providers, and the general community

Pediatr Blood Cancer. 2021 Aug;68(8):e29101. doi: 10.1002/pbc.29101. Epub 2021 Jun 5.

Authors

Richard De Abreu Lourenco¹, Maria C McCarthy^{2

3

4}, Laura J McMillan², Michael Sullivan^{3

4}, Lyn Gillam^{5

6}

Affiliations

¹ Centre for Health Economics Research and Evaluation, University of Technology Sydney, Haymarket, New South Wales, Australia.
² Clinical Sciences, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
³ Children's Cancer Centre, Royal Children's Hospital, Parkville, Victoria, Australia.
⁴ Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia.
⁵ Melbourne School of Population and Global Health, University of Melbourne, Parkville, Victoria, Australia.
⁶ Department of Bioethics, Royal Children's Hospital, Parkville, Victoria, Australia.

PMID: 34089211
DOI: 10.1002/pbc.29101

Abstract

Background: The emerging role of genomically guided precision medicine in pediatric cancer care presents significant clinical, practical, and ethical challenges. We investigated the factors that influence decision-making in genomic medicine from the perspective of different stakeholders in the context of difficult-to-treat childhood cancer.

Methods: Health care providers (HCPs), parents of childhood cancer survivors, and general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a genomically guided approach to pediatric cancer treatment. Respondents completed eight choice questions varying by survival benefit, prognosis, likelihood of finding a target, quality of life (QoL), HCP/parent preference, need for biopsy, cost, and who pays. Data were analyzed using a probability regression model, with findings expressed as relative importance, stated importance, and marginal willingness to pay (mWTP).

Results: One hundred twenty-six HCPs, 130 parents, and 531 community members participated. The probability of recommending/choosing genomically guided treatment increased significantly with better prognosis, survival benefit, improvements in QoL, and decision-making partner support. It decreased with increasing costs and if parents paid for treatment. HCPs were more responsive to all factors but were most influenced by survival outcomes, and parents and community members by QoL. In contrast to these forced choice preference results, HCPs stated they were most influenced by QoL and community members by survival.

Conclusion: Our findings support the primacy of QoL in genomic decision-making, with some differences across stakeholders in the other factors influencing decision-making. These findings emphasize the need for high-quality information giving and communication to support genomic medicine choices.

Keywords: childhood cancer; choice; decision-making; genomics; next-generation sequencing; preferences.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Child
Decision Making*
Genomic Medicine*
Health Personnel
Humans
Neoplasms* / genetics
Neoplasms* / therapy
Parents
Quality of Life*
Surveys and Questionnaires