The need for decision and communication aids: a survey of breast cancer survivors

Belkora, Jeffrey; Miller, M. F.; Dougherty, K. R.; Gayer, Christopher; Golant, Mitch; Buzaglo, Joanne S.

doi:10.12788/jcso.0116

Cited by 7 publications

(7 citation statements)

References 9 publications

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“…3 Interventions that enhance physician engagement in decision making and improve patient-physician communication have been tested in many forms and across many types of cancer. Such tools range from simple decision boards to more complex webbased instruments and are well documented to influence patients' choice of care.…”

Section: 2mentioning

confidence: 99%

Contralateral Prophylactic Mastectomy: Anxiety, Knowledge and Shared Decision Making

Bedrosian

Yao

2015

Ann Surg Oncol

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With the steady increase of contralateral prophylactic mastectomy (CPM) now well documented, attention increasingly has been directed at understanding the potential reasons driving utilization of this treatment approach. A key area is examining the perspective of patients who are making this choice and how this perspective may differ from those choosing more limited surgery. In this issue of the Annals of Surgical Oncology, Rosenberg et al. detail the decisionmaking process of young women who have opted for bilateral mastectomy. Using a large registry of young women, they explore psychological, emotional, and decision-making aspects of the choice for surgical management of breast cancer. In this cohort of patients younger than age 40 years, most of whom are not known to be BRCA 1/2 mutation carriers, they report that nearly half of the study population underwent CPM. They confirm prior associations between anxiety and fear and use of CPM and provide new insights about how surgical decisions vary depending on who is driving the decision: the physician or the patient. Significantly, nearly two-thirds of women who stated that the choice of surgical therapy was self-driven chose CPM. In stark contrast, women who reported that the decision was made by their doctor had very low rates (6 %) of CPM. In multivariate analysis, patient-driven decision was associated with threefold greater likelihood of CPM compared with those who reported shared decision making. While physician influences on use of CPM has previously been suggested, Rosenberg et al. provide more direct evidence that physician interaction and engagement on this topic may represent one opportunity to reverse the increasing utilization of CPM.

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Section: 2mentioning

confidence: 99%

Contralateral Prophylactic Mastectomy: Anxiety, Knowledge and Shared Decision Making

Bedrosian

Yao

2015

Ann Surg Oncol

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“…We elicited feedback from stakeholders, including patients, nurses, and surgeons, on how to “seamlessly” incorporate pre-consultation delivery of web-based breast cancer information into routine care, and identify anticipated implementation barriers. Based on this feedback, we identified core elements critical to successful implementation: 1) Identification of a surgeon champion and change team to guide activities for eliciting “buy-in”; 2) Delivery prior to the surgical consultation when patients’ informational needs are highest in order to prepare patients to play an active role in decision making [14,15]; 3) Direct delivery to patients; and 4) Performance of audit-feedback early in implementation to maximize the proportion of patients reached. In the developed implementation strategy, patients were offered the web-based information by nursing staff or a breast cancer navigator by telephone either at the time of diagnosis or when their appointment in the surgery clinic was made; this conversation followed a script that addressed anticipated barriers to patients accepting the information.…”

Section: Methodsmentioning

confidence: 99%

“…Successful surgical planning is dependent upon patients being both well informed and engaged in the decision making process [11–13]. During the “informational gap” between diagnosis and when they meet their surgeon, breast cancer patients often turn to the internet for information and guidance [4,14,15]. However, our prior work demonstrated that the information they find to support their decision for breast cancer surgery is frequently of poor quality [6].…”

Section: Introductionmentioning

confidence: 99%

Feasibility of Providing Web-Based Information to Breast Cancer Patients Prior to a Surgical Consult

Bruce¹,

Tucholka²,

Steffens

et al. 2017

J Canc Educ

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Patients facing decisions for breast cancer surgery commonly search the internet. Directing patients to high-quality websites prior to the surgeon consultation may be one way of supporting patients' informational needs. The objective was to test an approach for delivering web-based information to breast cancer patients. The implementation strategy was developed using the Replicating Effective Programs framework. Pilot testing measured the proportion that accepted the web-based information. A pre-consultation survey assessed whether the information was reviewed and the acceptability to stakeholders. Reasons for declining guided refinement to the implementation package. Eighty-two percent (309/377) accepted the web-based information. Of the 309 that accepted, 244 completed the pre-consultation survey. Participants were a median 59 years, white (98%), and highly educated (>50% with a college degree). Most patients who completed the questionnaire reported reviewing the website (85%), and nearly all found it helpful. Surgeons thought implementation increased visit efficiency (5/6) and would result in patients making more informed decisions (6/6). The most common reasons patients declined information were limited internet comfort or access (n = 36), emotional distress (n = 14), and preference to receive information directly from the surgeon (n = 7). Routine delivery of web-based information to breast cancer patients prior to the surgeon consultation is feasible. High stakeholder acceptability combined with the low implementation burden means that these findings have immediate relevance for improving care quality.

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“…5,6 However, delivering information within this narrow window can be challenging. Online delivery is one way to address this challenge.…”

Section: Introductionmentioning

confidence: 99%

A Randomized Controlled Trial Evaluating the Impact of Web-Based Information on Breast Cancer Patients' Knowledge of Surgical Treatment Options

Tucholka

Yang

Bruce

et al. 2018

Journal of the American College of Surgeons

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Background: Prior research suggests that providing women newly diagnosed with breast cancer information during the gap between cancer diagnosis and their first surgeon consultation may support decision making. Our objective was to compare patients’ knowledge after the pre-consultation delivery of standard websites versus a web-based decision aid (DA). Study Design: We randomized women with stage 0-III breast cancer within an academic and community breast clinic to be emailed a link to selected standard websites (National Cancer Institute, American Cancer Society, Breastcancer.org,) versus the Health Dialog DA (Clinicaltrials.gov NCT03116035). Patients seeking second opinions, diagnosed by excisional biopsy, or without an email address were ineligible. Pre-consultation knowledge was assessed using the Breast Cancer Surgery Decision Quality Instrument. We compared differences in knowledge using t-test. Results Median patient age was 59 years, 99% were white, and 65% a college degree or higher, with no differences in demographics between study arms. Knowledge was higher in patients who received the DA (median 80% vs 66% correct, p=0.01). DA patients were more likely to know that waiting a few weeks to make a treatment decision would not affect survival (72% versus 54%, p<0.01). Patients in both arms found the information helpful (median score 8/10). Conclusion Although patients found receipt of any pre-consultation information helpful, the DA resulted in improved knowledge over standard websites and effectively conveyed that there is time to make a breast cancer surgery decision. Decreasing the urgency patients feel may improve the quality of patient-surgeon interactions and lead to more informed decision-making.

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The need for decision and communication aids: a survey of breast cancer survivors

Abstract: Cancer survivors expressed gaps in their care with respect to reviewing information, asking questions, obtaining answers, and making decisions. Implementing decision and communication aids immediately upon diagnosis, when treatment decisions are being made, would address these gaps.

Cited by 7 publications

References 9 publications

Contralateral Prophylactic Mastectomy: Anxiety, Knowledge and Shared Decision Making

Contralateral Prophylactic Mastectomy: Anxiety, Knowledge and Shared Decision Making

Feasibility of Providing Web-Based Information to Breast Cancer Patients Prior to a Surgical Consult

A Randomized Controlled Trial Evaluating the Impact of Web-Based Information on Breast Cancer Patients' Knowledge of Surgical Treatment Options

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