Do patients use decision and communication aids as prompted when meeting with breast cancer specialists?

BACKGROUND: Our breast cancer clinic promotes patient use of decision and communication aids (DAs/CAs) through two mechanisms: coaching and prompting. From January through September 2010, we provided services to 462 of 1106 new visitors (42%). Of those 462 visitors, 267 (58%) received coaching. For the remainder (195 or 42%), the best we could do was prompt them to self-administer the DA and CAs. OBJECTIVE: We wanted to learn whether patients prompted to use DAs/CAs did so. METHODS: We surveyed prompted patients after their visits. We asked how much of each DA they reviewed, whether they listed questions, made notes and audio-recorded their consultations. We tallied frequencies and explored associations using logistic regression. RESULTS: Of the 195 prompted patients, 82 responded to surveys (42%). Nearly all (66/73 or 90%) reported reviewing some or all of the booklets and 52/73 (71%) reported viewing some or all of the DVDs. While 63/78 (81%) responded that they wrote a question list, only 14/61 (23%) said they showed it to their doctor. Two-thirds (51/77 or 66%) said someone took notes, but only 16/79 (20%) reported making audio recordings. DISCUSSION: More patients reported following prompts to use DAs than CAs. Few reported showing question lists to physicians or recording their visits. Our exploratory analyses surfaced associations between using CAs and race/ethnicity or education that merit further investigation. CONCLUSION: Prompting patients assures better use of decision than communication aids. Clinicians may need to take a more active role to ensure patients receive adequate notes and recordings.

Measuring decision quality: psychometric evaluation of a new instrument for breast cancer chemotherapy.

BACKGROUND: Women diagnosed with early stage (I or II) breast cancer face a highly challenging decision - whether or not to undergo adjuvant chemotherapy. We developed a decision quality instrument for chemotherapy for early stage breast cancer and sought to evaluate its performance. METHODS: Cross-sectional, mailed survey of recent breast cancer survivors, providers, and healthy controls and a retest survey of survivors. The decision quality instrument includes questions on knowledge and personal goals. It results in a knowledge score and concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, validity, and reliability of the survey instrument were examined. RESULTS: Responses were received from 352 patients, 89 providers and 35 healthy controls. The decision quality instrument was feasible to implement with few missing data. The knowledge scores had good retest reliability (intraclass correlation coefficient (ICC) =0.75). Knowledge scores discriminated between providers and patients (mean difference 31.1%, 95% CI 26.9, 35.3) and between patients and healthy controls (mean difference 11.2, 95% CI 5.4, 17.1). Most providers reported that the knowledge items covered essential content. Two of the five goal items had a ceiling effect, and one goal had low content validity. The goal items had moderate retest reliability (ICC's 0.57 to 0.78). In the multivariable model of treatment, none of the patient goals was associated with receipt of chemotherapy. Age and hormone receptor status were the only variables independently associated with chemotherapy. Most patients (77.6%) had treatment concordant with that predicted by the model. Patients who had concordant treatment had similar levels of confidence and regret as those who did not. CONCLUSIONS: The Decision Quality Instrument is a reliable and valid measure of patient knowledge about chemotherapy, but its ability to measure concordance with patient goals is limited. In this sample, patient goals were not associated with treatment, and most patients reported they were not asked their preference, suggesting that goals were not adequately considered in decision making.

Sustainment of the TeleSleep program for rural veterans.

Background: In fiscal year 2021, the Veterans Health Administration (VHA) provided care for sleep disorders to 599,966 Veterans, including 189,932 rural Veterans. To further improve rural access, the VA Office of Rural Health developed the TeleSleep Enterprise-Wide Initiative (EWI). TeleSleep's telemedicine strategies include tests for sleep apnea at the Veteran's home rather than in a sleep lab; Clinical Video Telehealth applications; and other forms of virtual care. In 2017 and 2020, VHA provided 3-year start-up funding to launch new TeleSleep programs at rural-serving VA medical facilities. Methods: In early 2022, we surveyed leaders of 24 sites that received TeleSleep funding to identify successes, failures, facilitators, and barriers relevant to sustaining TeleSleep implementations upon expiration of startup funding. We tabulated frequencies on the multiple choice questions in the survey, and, using the survey's critical incident framework, summarized the responses to open-ended questions. TeleSleep program leaders discussed the responses and synthesized recommendations for improvement. Results: 18 sites reported sustainment, while six were "on track." Sustainment involved medical centers or regional entities incorporating TeleSleep into their budgets. Facilitators included: demonstrating value; aligning with local priorities; and collaborating with spoke sites serving rural Veterans. Barriers included: misalignment with local priorities; and hiring delays. COVID was a facilitator, as it stimulated adoption of telehealth practices; and also a barrier, as it consumed attention and resources. Recommendations included: longer startup funding; dedicated funding for human resources to accelerate hiring; funders communicating with local facility leaders regarding how TeleSleep aligns with organizational priorities; hiring into job classifications aligned with market pay; and obtaining, from finance departments, projections and outcomes for the return on investment in TeleSleep.

Validation Study on Risk-Reduction Activities after Exposure to a Personalized Breast Cancer Risk-Assessment Education Tool in High-Risk Women in the WISDOM Study.

We performed a 318-participant validation study of an individualized risk assessment tool in women identified as having high- or highest-risk of breast cancer in the personalized arm of the Women Informed to Screen Depending on Measures of risk (WISDOM) trial. Per protocol, these women were educated about their risk and risk reducing options using the Breast Health Decisions (BHD) tool, which uses patient-friendly visuals and 8th grade reading level language to convey risk and prevention options. Prior to exposure to the educational tool, 4.7% of women were already taking endocrine risk reduction, 38.7% were reducing alcohol intake, and 62.6% were exercising. Three months after initial use of BHD, 8.4% of women who considered endocrine risk reduction, 33% of women who considered alcohol reduction, and 46% of women who considered exercise pursued the risk-reducing activities. Unlike lifestyle interventions which are under the control of the patient, additional barriers at the level of the healthcare provider may be impeding the targeted use of endocrine risk reduction medications in women with elevated breast cancer risk.

Veterans Health Administration response to 2021 recall of Philips Respironics devices: A case study.

This case study describes, for the time frame of June 2021 through August 2022, the U.S. Veterans Health Administration (VHA) organizational response to a manufacturer's recall of positive airway pressure devices used in the treatment of sleep disordered breathing. VHA estimated it could take over a year for Veterans to receive replacement devices. Veterans awaiting a replacement faced a dilemma. They could continue using the recalled devices and bear the product safety risks that led to the recall, or they could stop using them and bear the risks of untreated sleep disordered breathing. Using a program monitoring approach, we report on the processes VHA put in place to respond to the recall. Specifically, we report on the strategic, service, and operational plans associated with VHA's response to the recall for Veterans needing replacement devices. In program monitoring, the strategic plan reflects the internal process objectives for the program. The service plan articulates how the delivery of services will intersect the customer journey. The operational plan describes how the program's resources and actions must support the service delivery plan. VHA's strategic plan featured a clinician-led, as opposed to primarily legal or administrative response to the recall. The recall response team also engaged with VHA's medical ethics service to articulate an ethical framework guiding the allocation of replacement devices under conditions of scarcity. This framework proposed allocating scarce devices to Veterans according to their clinical need. The service plan invited Veterans to schedule visits with sleep providers who could assess their clinical need and counsel them accordingly. The operational plan distributed devices according to clinical need as they became available. Monitoring our program processes in real time helped VHA launch and adapt its response to a recall affecting more than 700,000 Veterans.

Measuring decision quality: psychometric evaluation of a new instrument for breast cancer surgery.

BACKGROUND: The purpose of this paper is to examine the acceptability, feasibility, reliability and validity of a new decision quality instrument that assesses the extent to which patients are informed and receive treatments that match their goals. METHODS: Cross-sectional mail survey of recent breast cancer survivors, providers and healthy controls and a retest survey of survivors. The decision quality instrument includes knowledge questions and a set of goals, and results in two scores: a breast cancer surgery knowledge score and a concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, discriminant validity, content validity, predictive validity and retest reliability of the survey instrument were examined. RESULTS: We had responses from 440 eligible patients, 88 providers and 35 healthy controls. The decision quality instrument was feasible to implement in this study, with low missing data. The knowledge score had good retest reliability (intraclass correlation coefficient=0.70) and discriminated between providers and patients (mean difference 35%, p<0.001). The majority of providers felt that the knowledge items covered content that was essential for the decision. Five of the 6 treatment goals met targets for content validity. The five goals had moderate to strong retest reliability (0.64 to 0.87). The concordance score was 89%, indicating that a majority had treatments concordant with that predicted by their goals. Patients who had concordant treatment had similar levels of confidence and regret as those who did not. CONCLUSIONS: The decision quality instrument met the criteria of feasibility, reliability, discriminant and content validity in this sample. Additional research to examine performance of the instrument in prospective studies and more diverse populations is needed.

Does use of the adjuvant! model influence use of adjuvant therapy through better risk communication?

Adjuvant! is a model that provides recurrence and mortality risk predictions for patients with breast cancer considering adjuvant therapies. Although low-risk patients who saw Adjuvant! chose adjuvant therapy less frequently, whether this was because of educational or other aspects of the decision aid is unknown. The authors explored whether Adjuvant! affects choice of therapy through increased patient knowledge. A subset of data were analyzed from a cluster randomized trial in which oncology practices in 2 major United States cities were randomly assigned to use either Adjuvant! or an informational pamphlet to educate patients. Of 405 patients, 48 were low-risk, with 28 assigned to the decision aid and 20 to the pamphlet. Among the low-risk patients, using frequency tables and Fisher exact tests, the authors explored whether Adjuvant! was associated with more accurate patient estimates of survival; whether accuracy was associated with treatment choice; and whether, after controlling for accuracy, any remaining association was seen between Adjuvant! and treatment choice. Adjuvant! was associated with more accurate estimates of baseline prognosis compared with the pamphlet (57% vs. 25%; P = .04). Patients who had more accurate estimates of baseline prognosis were less likely to choose adjuvant therapy (62% vs. 89%; P = .04). After controlling for accuracy, no statistically significant association was found between the use of Adjuvant! and adjuvant therapy (P = .59 and P = .11 for inaccurate and accurate patients, respectively). Adjuvant! seems to influence patient choice through educational rather than other means of persuasion. However, many patients held inaccurate risk perceptions after viewing Adjuvant!.

Oncologist use of the Adjuvant! model for risk communication: a pilot study examining patient knowledge of 10-year prognosis.

BACKGROUND: Our purpose was to collect preliminary data on newly diagnosed breast cancer patient knowledge of prognosis before and after oncology visits. Many oncologists use a validated prognostic software model, Adjuvant!, to estimate 10-year recurrence and mortality outcomes for breast cancer local and adjuvant therapy. Some oncologists are printing Adjuvant! screens to use as visual aids during consultations. No study has reported how such use of Adjuvant! printouts affects patient knowledge of prognosis. We hypothesized that Adjuvant! printouts would be associated with significant changes in the proportion of patients with accurate understanding of local therapy prognosis. METHODS: We recruited a convenience sample of 20 patients seen by 2 senior oncologists using Adjuvant! printouts of recurrence and mortality screens in our academic medical center. We asked patients for their estimates of local therapy recurrence and mortality risks and counted the number of patients whose estimates were within +/- 5% of Adjuvant! before and after the oncology visit, testing whether pre/post changes were significant using McNemar's two-sided test at a significance level of 5%. RESULTS: Two patients (10%) accurately estimated local therapy recurrence and mortality risks before the oncology visit, while seven out of twenty (35%) were accurate afterwards (p = 0.125). CONCLUSION: A majority of patients in our sample were inaccurate in estimating their local therapy recurrence and mortality risks, even after being shown printouts summarizing these risks during their oncology visits. Larger studies are needed to replicate or repudiate these preliminary findings, and test alternative methods of presenting risk estimates. Meanwhile, oncologists should be wary of relying exclusively on Adjuvant! printouts to communicate local therapy recurrence and mortality estimates to patients, as they may leave a majority of patients misinformed.

Are patients getting the "gist" in risk communication? Patient understanding of prognosis in breast cancer treatment.

BACKGROUND: Many oncologists consult the Adjuvant! prognostic model to communicate risk with breast cancer patients; however, little is known about how effective that communication is. METHODS: The authors analyzed this small data set featuring 20 breast cancer patients' risk estimates, focusing on rankings or gist of the estimates. RESULTS: Overall, there was no gain in the accuracy of patient rankings. The number of patients with more accurate estimates was matched by the number of patients with less accurate estimates after consultation. CONCLUSIONS: The current methods used by oncologists to present Adjuvant! risks were not effective in helping patients to get the gist of their risks.

Impact of Timing on Measurement of Decision Quality and Shared Decision Making: Longitudinal Cohort Study of Breast Cancer Patients.

Purpose.The objective of this study was to examine whether scores of shared decision-making measures differ when collected shortly after (1 month) or long after (1 year) breast cancer surgical treatment decisions. Methods. Longitudinal, multisite survey of breast cancer (BC) patients, with measurements at 1 month and 1 year after surgery at 4 cancer centers. Patients completed the BC Surgery Decision Quality Instrument (used to generate a knowledge score, ratings of goals, and concordance with treatment preferences) and Shared Decision Making (SDM) Process survey at both time points. We tested several hypotheses related to the scores over time, including whether the scores discriminated between sites that did and did not offer formal decision support services. Exploratory analyses examined factors associated with large increases and decreases in scores over time. Results. Across the 4 sites, 229 patients completed both assessments. The mean total knowledge scores (69.2% [SD 16.6%] at 1 month and 69.4% [SD 17.7%] at 1 year, P = 0.86), SDM Process scores (2.7 [SD 1.1] 1 month v. 2.7 [SD 1.2] 1 year, P = 0.68), and the percentage of patients receiving their preferred treatment (92% at 1 month and 92% at 1 year, P = 1.0) were not significantly different over time. The site using formal decision support had significantly higher knowledge and SDM Process scores at 1 month, and only the SDM Process scores remained significantly higher at 1 year. A significant percentage of patients had large changes in their individual knowledge and SDM Process scores, with increases balancing out decreases. Conclusion. For population-level assessments, it is reasonable to survey BC patients up to a year after the decision, greatly increasing feasibility of measurement. For those evaluating decision support interventions, shorter follow-up is more likely to detect an impact on knowledge scores.

Monitoring the implementation of Consultation Planning, Recording, and Summarizing in a breast care center.

OBJECTIVE: We implemented and monitored a clinical service, Consultation Planning, Recording and Summarizing (CPRS), in which trained facilitators elicit patient questions for doctors, and then audio-record, and summarize the doctor-patient consultations. METHODS: We trained 8 schedulers to offer CPRS to breast cancer patients making treatment decisions, and trained 14 premedical interns to provide the service. We surveyed a convenience sample of patients regarding their self-efficacy and decisional conflict. We solicited feedback from physicians, schedulers, and CPRS staff on our implementation of CPRS. RESULTS: 278 patients used CPRS over the 22-month study period, an exploitation rate of 32% compared to our capacity. 37 patients responded to surveys, providing pilot data showing improvements in self-efficacy and decisional conflict. Physicians, schedulers, and premedical interns recommended changes in the program's locations; delivery; products; and screening, recruitment and scheduling processes. CONCLUSION: Our monitoring of this implementation found elements of success while surfacing recommendations for improvement. PRACTICE IMPLICATIONS: We made changes based on study findings. We moved Consultation Planning to conference rooms or telephone sessions; shortened the documents produced by CPRS staff; diverted slack resources to increase recruitment efforts; and obtained a waiver of consent in order to streamline and improve ongoing evaluation.

The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting.

BACKGROUND: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. OBJECTIVE: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? METHODS: The organization surveyed patients on decision self-efficacy (273 respondents, 99% response rate) and anxiety (190, 68%) before and after question-listing interventions delivered from 2006 - 2011. We analyzed responses using two-sided paired t-tests at 5% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). RESULTS: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. CONCLUSIONS: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety.

Consultation planning to help breast cancer patients prepare for medical consultations: effect on communication and satisfaction for patients and physicians.

PURPOSE: To measure the prevalence of communication barriers between breast cancer patients and their physicians and to present the results of a study evaluating the impact of two visit preparation techniques on communication and satisfaction for breast cancer patients and their physicians. PATIENTS AND METHODS: We recruited 132 breast cancer patients from two outpatient cancer centers in a sequential, controlled trial. Ninety-four consented and completed the trial. Patients were assigned to one of two visit preparation interventions before their appointment with either a surgeon or a medical oncologist. In the control intervention, called Productive Listening, a researcher listened to and prompted patients to reflect on their experiences communicating with physicians. In the experimental intervention, called Consultation Planning, a researcher elicited questions and concerns, generated a printed agenda for the upcoming consultation, and engaged patients in techniques to improve communication with their physicians. Valid and reliable surveys measured communication barriers, satisfaction with the intervention, and patients' and physicians' satisfaction with the consultation. RESULTS: Sixty-four percent of the patients reported three or more communication barriers. Patients reported a significant reduction in communication barriers after both the intervention and the control session. Patients reported significantly higher satisfaction after the Consultation Planning sessions. Physicians reported significantly higher satisfaction with those patients who had participated in a Consultation Planning session. CONCLUSION: Visit preparation sessions help patients prepare for medical consultations and reduce barriers to communication. Consultation Planning sessions, in which a researcher solicited the patient's agenda, were more satisfying to patients and physicians than the Productive Listening sessions.

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

BACKGROUND: Qualitative studies have identified barriers to communication and informed decision making among breast cancer survivors making treatment decisions. The prevalence of these barriers is unknown. OBJECTIVE: To quantify the need for decision support among breast cancer survivors. METHODS: We surveyed 2,521 breast cancer survivors participating in an online registry hosted by the Cancer Support Community to find out what proportion of breast cancer patients: made decisions during their first visit with a specialist; received satisfactory information before that visit; asked questions and received responses; and endorsed expanded use of decision support. RESULTS: We received 1,017 (41%) responses and analyzed 917 surveys from women who lived in the United States. Most of the respondents recalled making treatment decisions during their first visit (52%). A minority (14%) received information before the first specialist visit. At least 25% of respondents rated their satisfaction below 7 on a scale of 10 for decision-making, information, and questions asked and answered. Respondents endorsed the need for assistance with obtaining information, listing questions, taking notes, and making audio-recordings of visits. LIMITATIONS: The respondent sample skewed younger and had higher-stage cancer compared with all breast cancer survivors. Responses were subject to recall bias. CONCLUSIONS: 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.

Impact of decision aids in a sustained implementation at a breast care center.

OBJECTIVE: We examined the reach and impact of five decision aids (DAs) routinely distributed to breast cancer patients as part of a shared decision making demonstration project. METHODS: From 2005 to 2008, we surveyed patients' change in knowledge and decisional conflict (DC) before and after their review of DAs. Using bivariate tests, we identified significant predictors of change in knowledge or decisional conflict and entered significant predictors into a multivariate regression model. RESULTS: We distributed 1553 DAs to 1098 patients and received 549 completed surveys. The DAs were associated with increased knowledge and decreased DC. For knowledge, significant predictors of above-average change included: lower baseline knowledge and viewing the surgery decision aid. For decisional conflict, significant predictors of above-average change included: higher decisional conflict; viewing any of the early-stage cancer DAs; and Hispanic ethnicity. CONCLUSIONS: DAs used in routine care were associated with significant knowledge gains and reductions in decisional conflict. Some subsets of patients (those reporting low baseline knowledge, high DC, or Hispanic ethnicity) may benefit more than others. PRACTICE IMPLICATIONS: Breast cancer patients benefit overall from routine distribution of DAs. Our exploratory findings may be useful in generating hypotheses to identify target populations who would most benefit from reviewing DAs.

Expanding the reach of decision and communication aids in a breast care center: a quality improvement study.

OBJECTIVE: One academically based breast cancer clinic implements decision and communication aids as part of routine clinical care. This quality improvement study aimed to expand reach of these supportive materials and services with budget-neutral program changes. METHODS: We used program theory and continuous quality improvement to design changes to our program. We calculated reach as the number of new patient visits for which we administered decision and communication aids. We compared reach before and after the program changes. RESULTS: Program changes included: reassigning program outreach tasks from over-committed to under-utilized personnel; deploying personnel in floating rather than fixed schedules; and creating a waitlist so service delivery was dynamically reallocated from overbooked to underbooked personnel. Before these changes, we reached 208 visitors with decision aids, and 142 visitors with communication aids. Changes were associated with expanded reach, culminating in program year 2008 with the delivery of 936 decision aids and 285 communication aids. CONCLUSIONS: We observed over a fourfold increase in decision aid reach and a twofold increase in communication aid reach. We attribute increases to recent program changes. PRACTICE IMPLICATIONS: This study illustrates how program theory and quality improvement methods can contribute to expanded reach of decision and communication aids.

Implementing decision and communication aids to facilitate patient-centered care in breast cancer: a case study.

OBJECTIVE: Decision Services (DS) provide support for breast cancer patients at the University of California, San Francisco to help ensure patient-centered care. METHODS: We examined a case study to explore whether our program practices matched our program theory, and what the patient in the case thought was effective and ineffective about our decision support interventions. RESULTS: The patient relied on a decision aid to educate her husband about her condition; felt that her question list contributed to a productive and efficient consultation with her oncologist; credited an audio-recording with helping her remember to follow-up with a genetic counselor; and reviewed the consultation summary 30 days into treatment in order to reflect on her decision. The patient rated the interventions highly on surveys, and experienced desirable reductions in decisional conflict, and improvements in knowledge. However, the question-prompting intervention was associated with a small decrease in self-efficacy, and the patient criticized the decision aid for omitting mention of a prognostic test. CONCLUSION: This case illustrates how decision support interventions can be deployed to promote patient-centered care. PRACTICE IMPLICATIONS: Breast care centers should consider distributing decision aids and assisting patients in listing questions, recording consultations, and obtaining written consultation summaries.

Improving the quality of decision making in breast cancer: consultation planning template and consultation recording template.

PURPOSE/OBJECTIVES: To describe two templates that can be used to improve the quality of breast cancer treatment decisions. DATA SOURCES: Case study, survey of current users, three clinical trials. FINDINGS: Clinical applications of the Consultation Planning Template and Consultation Recording Template vary across organizations. Clinical trials have demonstrated that the templates can improve the quality of decisions, the quality of communication between patients and providers, and satisfaction. CONCLUSIONS: The templates can be adapted to different clinical settings and can improve the quality of treatment decisions. IMPLICATIONS FOR NURSING: Nurses often provide the majority of education and coaching for patients making decisions. As patients' demands for involvement in decision making increase, nurses need practical tools to help patients participate. The templates are practical tools that nurses can use to help patients make better decisions.