The DOI matches its Crossref record; 59 of the 59 references it cites were found in a registry or an index.
Finding Out What Matters in Decision-Making Related to Genomics and Personalized Medicine in Pediatric Oncology: Developing Attributes to Include in a Discrete Choice Experiment
Abstract
Background Treatment decision-making in pediatric oncology can be complex. Recent advances in genome sequencing and novel or 'personalized' therapies potentially increases the complexity of decision-making and treatment options. Objectives This study explored the views and experiences of healthcare providers (HCPs) and parents with respect to decision-making in difficult-to-treat cancers, including genomic decision-making. Methods A two-phase qualitative study was undertaken in which oncologists and nurses and parents of children with relapsed and refractory cancers were interviewed using a semi-structured interview guide. Data were analyzed thematically, with a focus on measurable themes relevant to the development of candidate attributes for a discrete choice experiment (DCE). Secondly, a review of studies that utilized stated preference experiments in the fields of genomics, medical decision-making, and pediatrics was undertaken and compared with the candidate attributes identified from interviews. Results Six candidate attributes were developed from the interview themes: clinical benefit, quality of life (QoL) including both treatment effects and functionality, likelihood of a target, cost (who pays), recommendation of HCP or extent family supported the decision, and whether a biopsy was needed. Two further candidate attributes were identified from the literature review: severity of illness and cost (dollar amount). Conclusions This study identified eight candidate attributes that will be further validated prior to developing a DCE aimed at better understanding factors influencing decision-making related to genomic sequencing and personalized medicine. This study and the proposed DCE will contribute to improving ethical and clinical practices in the application of novel genomic technology in pediatric oncology.
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Some professionals doubt that all patients will benefit significantly from precision medicine.
“Apart from these positive assessments, studies also demonstrate that some professionals are uncertain about the value of genetic testing [51, 90] and doubt that all patients will benefit significantly from PM [30, 31, 42, 49, 54, 57].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [30]
Many clinicians and researchers are well aware of the limited or ambiguous evidence for the meaning of test results and possible treatment outcomes and regard the lack of practice guidelines as a barrier for the implementation of tests.
“Many clinicians and researchers are well aware of the limited [27, 30, 31, 35, 42, 79, 84] or ambiguous evidence [32] for the meaning of test results and possible treatment outcomes and regard the lack of practice guidelines as a barrier for the implementation of tests [27, 79].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [30]
In several studies, professionals and patients express concern about the high cost of PM.
“In several studies, professionals and patients express concern about the high cost of PM.”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [30]
Some health care professionals question the cost-benefit ratio of PM.
“Although professionals expect a reduction of the overall health care costs in the long term [47], some health care professionals question the cost–benefit ratio of PM [30, 54, 84, 105].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [30]
Compared to the costs of chronic diseases, PM costs are perceived as not only being massive, but also caused by a much smaller proportion of the entire patient population.
“Compared to the costs of chronic diseases, PM costs are perceived as not only being massive, but also caused by a much smaller proportion of the entire patient population [30].”
From Patients’ and professionals’ views related to ethical issues in precision medicine: a mixed research synthesis (2021) · cites this paper as [30]
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Metadata
- Authors
- McCarthy, M. C., De Abreu Lourenco, R., McMillan, L. J., Meshcheriakova, E., Cao, A., & Gillam, L.
- Affiliations
- Royal Children's Hospital (AU)
- Murdoch Children's Research Institute (AU)
- University of Technology Sydney (AU)
- The University of Melbourne (AU)
- Corresponding author
- McCarthy, Maria C.
- Venue
- The Patient - Patient-Centered Outcomes Research
- Published
- 2020-02-10
- Volume
- 13
- Issue
- 3
- Pages
- 347-361
- ISSN
- 1178-1653 (ISSN-L)
- 1178-1661
- OpenAlex
- W3005685261
- Cited by
- 24
- References
- 59
- Citations by year
- 2026: 2 · 2025: 4 · 2024: 2 · 2023: 4 · 2022: 4 · 2021: 6 · 2020: 2
- FWCI
- 3.40
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Patient (publishedVersion)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- UTS ePRESS (University of Technology Sydney) (submittedVersion)
- Funders
- Victorian Cancer Agency (HSR15034)
- Topics
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Economic and Environmental Valuation
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- pediatric oncology, personalized medicine, discrete choice experiment, candidate characteristics, stated preference, relapsed/refractory cancer, healthcare providers' perspectives, parents' perspectives, genome sequencing, quality of life, cost, biopsy, family support
- MeSH terms
- Adult, Australia, Choice Behavior, Decision Making, Female, Humans, Interviews as Topic, Male, Middle Aged, Neoplasms, New Zealand, Pediatrics, Genomics, Qualitative Research, Young Adult, Precision Medicine
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