ArticlePatient education and counseling2019
Decision role preferences for return of results from genome sequencing amongst young breast cancer patients.
Article in Patient education and counseling, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
What it found
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of communication interventions to help healthcare professionals discuss genetic testing for breast cancer.Breast cancer research and treatment · 2020Pooled it
- Trial
- The impact of the number of tests presented and a provider recommendation on decisions about genetic testing for cancer risk.Patient education and counseling · 2021Trial
- Decision-making and role preferences for receiving individual pharmacogenomic research results among participants at a Ugandan HIV research institute.BMC medical ethics · 2025Article
- Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Genetic counseling and testing for females at elevated risk for breast cancer: Protocol for the randomized controlled trial of the Know Your Risk intervention.Contemporary clinical trials · 2023Article
- Diversity of interpretations of the concept "patient-centered care for breast cancer patients"; a scoping review of current literature.Journal of evaluation in clinical practice · 2022Article
- Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- Elderly patients' decision-making embedded in the social context: a mixed-method analysis of subjective norms and social support.BMC geriatrics · 2020Article
- Development of patient "profiles" to tailor counseling for incidental genomic sequencing results.European journal of human genetics : EJHG · 2019Article
- Women's preferences for and experiences with prenatal genetic testing decision making: Sociodemographic disparities in preference-concordant decision making.Patient education and counseling · 2019Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
objectiveTo better understand decision role preferences in women diagnosed with breast cancer at a young age for return of results of genome sequencing in research and clinical settings.
methodsParticipants were surveyed about communication and decision-making preferences related to genome sequencing results and factors that may affect these preferences. The primary outcome was decision role preference (Control Preference Scale) for selecting what results to receive within medical care or within a research study.
resultsFor results returned as part of medical care, most patients preferred a collaborative (N = 481, 45%) or active (N = 488, 45%) role with only 107 (10%) choosing a passive role. When making the decision as part of a research study, most patients preferred an active role (N = 617, 57%), 350 (33%) choosing a collaborative role, and110 (10%) choosing a passive role.
conclusionMost women in this study preferred to share in decision making. Participants had somewhat different role preferences for clinical and research contexts, with greater preference for active roles in the research context. PRACTICE IMPLICATIONS: We advocate for practice guidelines that incorporate discussion of decision role as an integral part of patient centered care and shared decision-making and recognize that more work is needed to inform guidelines.
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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.