ArticleHealth expectations : an international journal of public participation in health care and health policy2006
Decision aids for familial breast cancer: exploring women's views using focus groups.
Article in Health expectations : an international journal of public participation in health care and health policy, 2006. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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Who cites it
6 citing papers in PubMed.
- Development of Breast Cancer Choices: a decision support tool for young women with breast cancer deciding whether to have genetic testing for BRCA1/2 mutations.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2019Article
- Article
- Evidence-based health information from the users' perspective--a qualitative analysis.BMC health services research · 2013Article
- Factors influencing consultation to discuss family history of cancer by asymptomatic patients in primary care.Journal of community genetics · 2011Article
- Development and pilot testing of two decision aids for individuals considering genetic testing for cancer risk.Journal of genetic counseling · 2007Article
- Picking a frame for communicating about genetics: stigmas or challenges.Journal of genetic counseling · 2007Article
Corrections and comments
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThere is increasing need for accessible information about familial breast cancer for those facing complex decisions around genetic testing, screening and treatment. Information currently includes leaflets and computerized decision aids, offering interactive interfaces to clarify complex choices.
objectiveExploration of users' views and reactions to three decision aids for genetic testing for breast cancer using focus groups.
settingA regional cancer genetics service in the UK.
participantsWomen over 18 years of age who had been referred to Cancer Genetics Service for Wales (CGSW) and had received a risk assessment for familial breast cancer.
methodsQualitative study involving one pilot and six extended focus groups with 39 women at high, moderate and population risk. Two CD-ROMs and one paper-based aid evaluated for: clarity of presentation, ease of handling, emotive response, increased knowledge and greater informed choice.
resultsWomen reported variable preferences for different types of decision aids and mixed emotions, indicating the sensitivity of raising issues in decision support tools, lack of consensus over the most appropriate aid and no systematic differences between risk groups. Women remarked that aids increased their knowledge, particularly about breast cancer genes and risk and wanted a decision aid designed within the context of the NHS, in both paper-based and CD-ROM formats from an authoritative source. Mixed views about presentation styles suggest decision aids would be most effective with a user-selected range of formats.
conclusionsDecision aid development should be informed by users and should meet the needs of those concerned about their risk of breast cancer in the UK. Without such aids, patients will continue to search for information from a variety of sources of varying quality.
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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.