Communicating risk of hereditary breast and ovarian cancer with an interactive decision support tool

Rupert, Douglas; Squiers, Linda; Renaud, Jeanette; Whitehead, Nedra; Osborn, Roger; Furberg, Robert; Squire, Claudia; Tzeng, Janice

doi:10.1016/j.pec.2013.04.008

Cited by 27 publications

(58 citation statements)

References 26 publications

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“…Eight studies relate to breast and/or ovarian cancer, three to prenatal screening (44)(45)(46) and one each to cystic fibrosis carrier testing (39), Tay Sachs carrier screening (42,43), testing decisions for a multiplex panel (47), and teaching concepts of gene-environment interaction (48). A total of 10 studies were randomized controlled trials (RCT), the remainder being descriptive/usability studies (40,44,47,49,50). The most common design (five studies) compared conventional GC alone to GC used with an e-tool; (51)(52)(53)(54)(55)(56)(57) three studies compared counselling by another health care professional (HCP) alone to counselling plus an e-tool (44,49,50,58).…”

Section: Summary Of Study Designsmentioning

confidence: 99%

“…A total of 10 studies were randomized controlled trials (RCT), the remainder being descriptive/usability studies (40,44,47,49,50). The most common design (five studies) compared conventional GC alone to GC used with an e-tool; (51)(52)(53)(54)(55)(56)(57) three studies compared counselling by another health care professional (HCP) alone to counselling plus an e-tool (44,49,50,58). Two studies performed a direct comparison between GC and an e-tool (39,42,43).…”

Section: Summary Of Study Designsmentioning

confidence: 99%

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Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Birch

2014

Clinical Genetics

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In-person genetic counselling (GC) is the model typically used to provide patients with information regarding their genetic testing options. Current and emerging demand for genetic testing may overburden the health care system and exceed the available numbers of genetic counsellors. Furthermore, GC is not always available at times and places convenient for patients. There is little evidence that the in-person model alone is always optimal and alternatives to in-person GC have been studied in genetics and other areas of health care. This review summarizes the published evidence between 1994 and March 2014 for interactive e-learning and decisional support e-tools that could be used in pre-test GC. A total of 21 papers from 15 heterogeneous studies of interactive e-learning tools, with or without decision aids, were reviewed. Study populations, designs, and outcomes varied widely but most used an e-tool as an adjunct to conventional GC. Knowledge acquisition and decisional comfort were achieved and the e-tools were generally well-accepted by users. In a time when health care budgets are constrained and availability of GC is limited, research is needed to determine the specific circumstances in which e-tools might replace or supplement some of the functions of genetic counsellors.

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Section: Summary Of Study Designsmentioning

confidence: 99%

Section: Summary Of Study Designsmentioning

confidence: 99%

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Birch

2014

Clinical Genetics

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“…These challenges include the following: lack of primary care providers (PCPs) knowledge about HBOC and limited experience in referring women for genetic counseling 13–15 ; poor systematic collection of family history data 16,17 ; provider difficulty in communicating genetic risk 18–20 ; and poor patient understanding regarding HBOC, the genetic counseling and testing process, and the meaning of genetic testing results. 21–24 Some interventions to address these challenges include continuing medical education for providers and the inclusion of nurses, allied health professionals, and patient navigators in the delivery of communication.…”

Section: Introductionmentioning

confidence: 99%

Young Women's Perceptions Regarding Communication with Healthcare Providers About Breast Cancer, Risk, and Prevention

Lunsford

Sapsis

Smither

et al. 2018

Journal of Women's Health

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Background Women younger than 45 years old have lower rates of breast cancer, but higher risk of recurrence and mortality after a cancer diagnosis. African American women are at risk for early onset and increased mortality; Ashkenazi Jewish women are at risk for genetic mutations leading to breast and ovarian cancer. Although younger women are encouraged to talk to doctors about their family history, little is known about these discussions. Materials and Methods In 2015, 167 women aged 18–44 years participated in 20 focus groups segmented by geographic location, age, race/ethnicity, and family history of breast and ovarian cancer. Transcript data were analyzed using NVivo 10 software. Results Although the majority of women talked to their doctor about breast and ovarian cancer, these conversations were brief and unsatisfying due to a lack of detail. Topics included family history, breast cancer screening, and breast self-examination. Some women with and without family history reported that healthcare providers offered screening and early detection advice based on their inquiries. However, few women took action or changed lifestyle behaviors with the intent to reduce risk as a result of the conversations. Conclusions Conversations with young women revealed missed opportunities to: enhance patient-provider communication and increase knowledge about breast cancer screening and surveillance for higher risk patients. Physicians, allied health professionals, and the public health community can better assist women in getting accurate and timely information about breast and ovarian cancer, understanding their family history to determine risk, and increasing healthy behaviors.

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“…DSTs have a long history of use within health, for example, cancer treatment;9 however, their use in midwifery care has been limited to only a few clinical scenarios that include mode of birth following a caesarean section,10 – 14 antenatal screening for fetal anomaly15 and delivery options for breech birth 16. Research shows that these DSTs are effective in reducing the decisional conflict that women have when it comes to making a choice 14 , 17.…”

Section: Existing Interventionsmentioning

confidence: 99%

The effect of a birthplace decision support tool on women’s decision-making and information gathering behaviours during pregnancy: mybirthplace study protocol

Wiggins

2018

BMJ Health Care Inform

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The recent Maternity Review for England highlighted the need for more choice for women with more accessible information to support decisions. This study assesses the effect of an unique Decision Support Tool (DST) called MyBirthplace on decision making and information gathering behaviours of pregnant women regarding birth place choice. The study seeks to understand women's views and opinions about using the DST and their feelings about how well the DST supports them to make a decision. METHODS: A mixed method sequential exploratory design will be utilised to meet the above aim. This three phase study will involve a proposed sample of 169 women from a large maternity hospital in the United Kingdom. Phase one will be a questionnaire survey with women pre and post access to the DST, which is given to them by their midwife at the initial appointment. The questionnaire will look at baseline data, knowledge level and decision making using the Stages of Decision making scale (SDMS). A follow up questionnaire at 28 weeks (phase 2) will review the SDMS to enable the usefulness of Mybirthplace to be evaluated and to seek women's opinion on various aspects of MyBirthplace. The proposed sample size was determined by a power calculation based on changes attributed to the DST as measured by the SDMS. Phase three involves qualitative interviews with a minimum of 10 purposely chosen women at approximately 36 weeks gestation, and is followed by collating data on where the women actually give birth. DISCUSSION: This study is the first study to assess the effect of a DST in supporting women's choice of place of birth. It will add to current DST literature. It is also one of very few studies to utilise the stages of decision making scale with DST in pregnancy and thus will build on the existing literature; whilst broaching key concepts highlighted in the National Maternity Review.

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Communicating risk of hereditary breast and ovarian cancer with an interactive decision support tool

Cited by 27 publications

References 26 publications

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Interactive e‐counselling for genetics pre‐test decisions: where are we now?

Young Women's Perceptions Regarding Communication with Healthcare Providers About Breast Cancer, Risk, and Prevention

The effect of a birthplace decision support tool on women’s decision-making and information gathering behaviours during pregnancy: mybirthplace study protocol

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