Literature DB >> 23169493

A focus group study on breast cancer risk presentation: one format does not fit all.

Michel Dorval1, Karine Bouchard, Jocelyne Chiquette, Gord Glendon, Christine M Maugard, Wilhelm Dubuisson, Seema Panchal, Jacques Simard.   

Abstract

Identifying a strategy that would optimize both the communication and understanding of the individual breast cancer risk remains a considerable challenge. This study explored the preferences of women with a family history of breast cancer about six presentation formats of individual breast cancer risk, as calculated from a risk prediction model. Thirty-four unaffected women attending genetic counseling because of a family history of breast cancer participated in six focus groups conducted in Québec City (2), Montréal (2) and Toronto (2), Canada. Six risk formats were presented for a fictitious case involving a 35-year-old woman (1-numerical: cumulative risk probabilities by age until 80 years; 2-risk curves: probabilities expressed in a risk curve that also provided a risk curve for a woman with no family history in first-degree relatives; 3-relative risk of breast cancer by age 80 years; 4 and 5-absolute risk of breast cancer and absolute chance of not developing breast cancer in the next 20 years; 6-qualitative: color-coded figure). Participants were asked to indicate their appreciation of each format. A group discussion followed during which participants commented on each format. The most and least appreciated formats were risk curves and relative risk, respectively. Overall, participants advocated the use of formats that combine quantitative, qualitative and visual features. Using a combination of approaches to communicate individual breast cancer risks could be associated with higher satisfaction of counselees. Given the increasing use of risk prediction models, it may be relevant to consider the preferences of both the counselee and the professional.

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Year:  2012        PMID: 23169493      PMCID: PMC3722946          DOI: 10.1038/ejhg.2012.248

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  45 in total

1.  The language of uncertainty in genetic risk communication: framing and verbal versus numerical information.

Authors:  M Welkenhuysen; G Evers-Kiebooms; G d'Ydewalle
Journal:  Patient Educ Couns       Date:  2001-05

Review 2.  Risk communication strategies: state of the art and effectiveness in the context of cancer genetic services.

Authors:  Claire Julian-Reynier; Myriam Welkenhuysen; Lea Hagoel; Marleen Decruyenaere; Penelope Hopwood
Journal:  Eur J Hum Genet       Date:  2003-10       Impact factor: 4.246

Review 3.  Re-conceptualizing risk in genetic counseling: implications for clinical practice.

Authors:  Jehannine C Austin
Journal:  J Genet Couns       Date:  2010-01-30       Impact factor: 2.537

4.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups.

Authors:  Allison Tong; Peter Sainsbury; Jonathan Craig
Journal:  Int J Qual Health Care       Date:  2007-09-14       Impact factor: 2.038

5.  Communication in genetic counseling: cognitive and emotional processing.

Authors:  Lee Ellington; Kimberly M Kelly; Maija Reblin; Seth Latimer; Debra Roter
Journal:  Health Commun       Date:  2011-06-09

6.  Psychological response to amniocentesis: II. Effects of coping style.

Authors:  S Phipps; A B Zinn
Journal:  Am J Med Genet       Date:  1986-09

7.  Statistical numeracy for health: a cross-cultural comparison with probabilistic national samples.

Authors:  Mirta Galesic; Rocio Garcia-Retamero
Journal:  Arch Intern Med       Date:  2010-03-08

Review 8.  Genetics, genomics, and cancer risk assessment: State of the Art and Future Directions in the Era of Personalized Medicine.

Authors:  Jeffrey N Weitzel; Kathleen R Blazer; Deborah J MacDonald; Julie O Culver; Kenneth Offit
Journal:  CA Cancer J Clin       Date:  2011-08-19       Impact factor: 508.702

Review 9.  A systematic review of breast cancer incidence risk prediction models with meta-analysis of their performance.

Authors:  Catherine Meads; Ikhlaaq Ahmed; Richard D Riley
Journal:  Breast Cancer Res Treat       Date:  2011-10-22       Impact factor: 4.872

10.  The impact of genetic counselling about breast cancer risk on women's risk perceptions and levels of distress.

Authors:  A Cull; E D Anderson; S Campbell; J Mackay; E Smyth; M Steel
Journal:  Br J Cancer       Date:  1999-02       Impact factor: 7.640

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  10 in total

1.  Educating patients and providers through comprehensive pharmacogenetic test reports.

Authors:  Susanne B Haga
Journal:  Pharmacogenomics       Date:  2017-07-07       Impact factor: 2.533

2.  Experience of Norwegian Female BRCA1 and BRCA2 Mutation-Carrying Participants in Educational Support Groups: a Qualitative Study.

Authors:  Marion Myklebust; Eva Gjengedal; Nina Strømsvik
Journal:  J Genet Couns       Date:  2016-04-19       Impact factor: 2.537

3.  General Practitioners and Breast Surgeons in France, Germany, Netherlands and the UK show variable breast cancer risk communication profiles.

Authors:  Claire Julian-Reynier; Anne-Deborah Bouhnik; D Gareth Evans; Hilary Harris; Christi J van Asperen; Aad Tibben; Joerg Schmidtke; Irmgard Nippert
Journal:  BMC Cancer       Date:  2015-04-09       Impact factor: 4.430

4.  iPrevent®: a tailored, web-based, decision support tool for breast cancer risk assessment and management.

Authors:  Ian M Collins; Adrian Bickerstaffe; Thilina Ranaweera; Sanjaya Maddumarachchi; Louise Keogh; Jon Emery; G Bruce Mann; Phyllis Butow; Prue Weideman; Emma Steel; Alison Trainer; Mathias Bressel; John L Hopper; Jack Cuzick; Antonis C Antoniou; Kelly-Anne Phillips
Journal:  Breast Cancer Res Treat       Date:  2016-02-24       Impact factor: 4.872

5.  Responses to provision of personalised cancer risk information: a qualitative interview study with members of the public.

Authors:  Juliet A Usher-Smith; Barbora Silarova; Artitaya Lophatananon; Robbie Duschinsky; Jackie Campbell; Joanne Warcaba; Kenneth Muir
Journal:  BMC Public Health       Date:  2017-12-22       Impact factor: 3.295

6.  A randomised controlled trial of the effect of providing online risk information and lifestyle advice for the most common preventable cancers: study protocol.

Authors:  Juliet A Usher-Smith; Golnessa Masson; Katie Mills; Stephen J Sharp; Stephen Sutton; William M P Klein; Simon J Griffin
Journal:  BMC Public Health       Date:  2018-06-26       Impact factor: 3.295

7.  Development and usability testing of a very brief intervention for personalised cancer risk assessment to promote behaviour change in primary care using normalisation process theory.

Authors:  Katie Mills; Simon J Griffin; Stephen Sutton; Juliet A Usher-Smith
Journal:  Prim Health Care Res Dev       Date:  2020-01-14       Impact factor: 1.458

8.  Public preferences for communicating personal genomic risk information: a focus group study.

Authors:  Amelia K Smit; Louise A Keogh; Jolyn Hersch; Ainsley J Newson; Phyllis Butow; Gabrielle Williams; Anne E Cust
Journal:  Health Expect       Date:  2015-09-01       Impact factor: 3.377

9.  Disentangling the determinants of interest and willingness-to-pay for breast cancer susceptibility testing in the general population: a cross-sectional Web-based survey among women of Québec (Canada).

Authors:  Jolyane Blouin-Bougie; Nabil Amara; Karine Bouchard; Jacques Simard; Michel Dorval
Journal:  BMJ Open       Date:  2018-02-27       Impact factor: 2.692

10.  Whether, when, how, and how much? General public's and cancer patients' views about the disclosure of genomic secondary findings.

Authors:  Jude Emmanuel Cléophat; Michel Dorval; Zaki El Haffaf; Jocelyne Chiquette; Stephanie Collins; Benjamin Malo; Vincent Fradet; Yann Joly; Hermann Nabi
Journal:  BMC Med Genomics       Date:  2021-06-26       Impact factor: 3.063

  10 in total

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