ArticleThe patient2020
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.
Article in The patient, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 3 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Factors that influence the uptake of precision-guided treatment recommendations in paediatric cancer: a systematic review.British journal of cancer · 2026Pooled it
- Attributes Used for Cancer Screening Discrete Choice Experiments: A Systematic Review.The patient · 2022Pooled it
- Quantitative Preferences for Lung Cancer Treatment from the Patients' Perspective: A Systematic Review.The patient · 2020Pooled it
- Trial
- Public perceptions of genetic sequencing in China: barriers and drivers of adoption.European journal of human genetics : EJHG · 2026Article
- Data Sharing, Biopsies and Patient Confidentiality in a Precision Medicine Trial for Childhood Cancer: A Mixed Method Study of Parents, Oncologists, and Scientists' Perspectives.Journal of personalized medicine · 2025Article
- How is Value Defined in Molecular Testing in Cancer? A Scoping Review.Applied health economics and health policy · 2025Article
- Context factors in clinical decision-making: a scoping review.BMC medical informatics and decision making · 2025Article
- Therapeutic biomarkers in acute myeloid leukemia: functional and genomic approaches.Frontiers in oncology · 2024Review
- Article
- Translating Precision Health for Pediatrics: A Scoping Review.Children (Basel, Switzerland) · 2023Article
- Review
- Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer.Cancers · 2022Article
- Parents' experiences with large-scale sequencing for genetic predisposition in pediatric renal cancer: A qualitative study.Psycho-oncology · 2022Article
- Continuing the sequence? Towards an economic evaluation of whole genome sequencing for the diagnosis of rare diseases in Scotland.Journal of community genetics · 2022Article
- An institutional audit of the use of novel drugs in pediatric oncology.Cancer reports (Hoboken, N.J.) · 2021Article
- Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis.BMC medical ethics · 2021Review
- Genomic Testing for Relapsed and Refractory Lymphoid Cancers: Understanding Patient Values.The patient · 2021Article
- Developing a Discrete Choice Experiment Instrument for Evaluating Patients' Preferences in Precision Oncology.Iranian journal of pharmaceutical research : IJPRArticle
Corrections and comments
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundTreatment 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.
objectivesThis 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.
methodsA 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.
resultsSix 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).
conclusionsThis 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.
Indexed as
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.