ArticleJournal of genetic counseling2004
Decision making with uncertain information: learning from women in a high risk breast cancer clinic.
Article in Journal of genetic counseling, 2004. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
18 citing papers in PubMed, 2 syntheses or guidelines pooled it, 44 citations in OpenAlex.
- Women's decision making about risk-reducing strategies in the context of hereditary breast and ovarian cancer: a systematic review.Journal of genetic counseling · 2009Pooled it
- How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review.Journal of genetic counseling · 2008Pooled it
- A pre-visit tailored website enhances counselees' realistic expectations and knowledge and fulfils information needs for breast cancer genetic counselling.Familial cancer · 2012Trial
- The Development and Evaluation of Novel Patient Educational Material for a Variant of Uncertain Significance (VUS) Result in Hereditary Cancer Genes.Current oncology (Toronto, Ont.) · 2024Article
- "Left in limbo": Exploring how patients with colorectal cancer interpret and respond to a suspected Lynch syndrome diagnosis.Hereditary cancer in clinical practice · 2021Article
- PGx in psychiatry: Patients' knowledge, interest, and uncertainty management preferences in the context of pharmacogenomic testing.Patient education and counseling · 2021Article
- Cancer Counseling of Low-Income Limited English Proficient Latina Women Using Medical Interpreters: Implications for Shared Decision-Making.Journal of genetic counseling · 2018Article
- Lynch Syndrome Limbo: Patient Understanding of Variants of Uncertain Significance.Journal of genetic counseling · 2017Article
- "I Don't Want to Be an Ostrich": Managing Mothers' Uncertainty during BRCA1/2 Genetic Counseling.Journal of genetic counseling · 2017Article
- Facilitators and Challenges in Psychosocial Adaptation to Being at Increased Familial Risk of Breast Cancer.Journal of genetic counseling · 2015Article
- Specific psychosocial issues of individuals undergoing genetic counseling for cancer - a literature review.Journal of genetic counseling · 2014Review
- Effects of BRCA1 and BRCA2 mutations on female fertility.Proceedings. Biological sciences · 2012Article
- Sources of uncertainty about daughters' breast cancer risk that emerge during genetic counseling consultations.Journal of genetic counseling · 2012Article
- Distress and psychosocial needs of a heterogeneous high risk familial cancer population.Journal of genetic counseling · 2011Article
- Large intron 14 rearrangement in APC results in splice defect and attenuated FAP.Human genetics · 2010Article
- Is no news good news? Inconclusive genetic test results in BRCA1 and BRCA2 from patients and professionals' perspectives.Hereditary cancer in clinical practice · 2010Article
- Predictors of decision making in families at risk for inherited breast/ovarian cancer.Health psychology : official journal of the Division of Health Psychology, American Psychological Association · 2009Article
- On using a cancer center cancer registry to identify newly affected women eligible for hereditary breast cancer syndrome testing: practical considerations.Journal of genetic counseling · 2006Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
Patients and practitioners may believe that clinically validated laboratory tests provide definitive information. Genetic counselors know this is not always so, and the possibility of inconclusive genetic test results is often discussed in the pretest counseling session. This added discussion topic prolongs the process of genetic counseling, but if there is inadequate patient understanding, patient frustration may be high when receiving a result of uncertain significance, and patients may make decisions about subsequent medical management based on incorrect assumptions. For patients/participants in a research setting, where the clinical validity of testing may be unclear, some patients/participants may still want to use test results to influence their medical management. This paper presents findings from a qualitative study wherein 15 women from the High Risk Breast Cancer Clinic at Utah's Huntsman Cancer Institute discussed how uncertainty regarding results affected their decision making. The women were randomly selected from 3 categories--women with test results of uncertain significance; women without cancer who have a mutation; and women who are members of high-risk families, but for whom no mutation was found. Study findings will be used in future studies to better understand how to improve communication regarding uncertain results, especially in a research environment.
Indexed as
Identifiers
What OpenQuestion holds
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.