作者: Richard De Abreu Lourenco , Michael Sullivan , Maria C McCarthy , Laura J McMillan , Lyn Gillam
DOI: 10.1002/PBC.29101
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摘要: 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 genomic from perspective different stakeholders context difficult-to-treat childhood cancer. METHODS Health providers (HCPs), parents survivors, general community members completed an online discrete choice experiment survey. Respondents considered whether to recommend (HCPs) or choose (parents/community) a approach treatment. eight questions varying by survival benefit, prognosis, likelihood finding target, quality life (QoL), HCP/parent preference, need for biopsy, cost, who pays. Data were analyzed using probability regression model, with findings expressed as relative importance, stated marginal willingness pay (mWTP). RESULTS One hundred twenty-six HCPs, 130 parents, 531 participated. recommending/choosing treatment increased significantly better improvements QoL, partner support. It decreased increasing costs if paid HCPs more responsive all but most influenced outcomes, QoL. In contrast these forced preference results, they QoL survival. CONCLUSION Our support primacy decision-making, some differences across other influencing decision-making. These emphasize high-quality information giving communication choices.