Toma de decisión en la prevención del cáncer de mama

Breast cancer is one of the most common cancers among women and the leading cause of death in women between the ages of 45-60 in most developed countries. The efficacy of prevention options has been established and includes lifestyle modifications, chemoprevention, and prophylactic surgery. Despite the efficacy of these options, breast cancer prevention remains underused, resulting in avoidable morbidity and mortality. Here, the main barriers to effective use of breast cancer prevention are outlined and a framework to facilitate patient-centered and evidence-based breast cancer prevention decision making is presented. The framework is intended to encourage a shared decision making approach to prevention decisions, within the context of a woman’s overall health. The inclusion of effective lifestyle interventions makes this framework relevant to most women, and is not exclusive to women at increased risk of developing breast cancer.El cáncer de mama es uno de los canceres más comunes y la causa principal de muerte entre las mujeres de las edades de 45 a 60 en la mayoría de los países desarrollados. La eficacia de las opciones preventivas están bien determinadas e incluyen modificaciones en el estilo de vida, quimioprevención y cirugía profiláctica. A pesar de la eficacia de estas opciones, los medios preventivos están infrautilizados, con resultados de morbilidad y mortalidad que podrían evitarse. En el presente trabajo, se exponen las barreras principales del uso efectivo de los medios de prevención del cáncer de mama y se presenta un encuadre para tomar decisiones en la prevención del cáncer de mama centradas en el paciente y basado en datos acerca de su eficacia. Este encuadre se propone para estimular una aproximación a la toma de decisiones compartida en el contexto de la salud global de la mujer. La inclusión de intervenciones efectivas sobre el estilo de vida hace que este encuadre sea relevante para la mayor parte de las mujeres y no sea exclusivo de las que tengan alto riesgo de cáncer de mama

Can mHealth Improve Risk Assessment in Underserved Populations? Acceptability of a Breast Health Questionnaire App in Ethnically Diverse, Older, Low-Income Women.

Background: Use of mobile health (mHealth) tools has expanded rapidly but little research has been done on its acceptability by low-income, diverse, older patient populations. Objective: To assess the attitudes of a diverse group of underserved women on the acceptability and usability of mHealth tools in a clinical setting using a breast health questionnaire application (app) at a public hospital mammography clinic. Methods: Semi-structured interviews were conducted in a breast-imaging center of an urban safety net institution from July-August 2012. Interviews included pre- and post-questions. Women completed the Athena breast health questionnaire app on an iPad and were asked about their experience and ways to improve the tool. Results: Fifteen women age 45-75 years from diverse ethnic and educational backgrounds were interviewed. The majority of women, 11 of 15, preferred the Athena app over a paper version and all the women thought the app was easy to use. Two Spanish-speaking Latinas preferred paper; and two women, with limited mobile phone use, did not have a preference. Many women indicated that it would be necessary to have staff available for instruction and assistance if the app were to be implemented. Conclusions: mHealth tools are an acceptable, if not preferred, method of collecting health information for diverse, older, low-income women. Further studies are required to evaluate the reliability and accuracy of data collection using mHealth tools in underserved populations. mHealth tools should be explored as a novel way to engage diverse populations to improve clinical care and bridge gaps in health disparities

Decision making in breast cancer prevention

Breast cancer is one of the most common cancers among women and the leading cause of death in women between the ages of 45-60 in most developed countries. The efficacy of prevention options has been established and includes lifestyle modifications, chemoprevention, and prophylactic surgery. Despite the efficacy of these options, breast cancer prevention remains underused, resulting in avoidable morbidity and mortality. Here, the main barriers to effective use of breast cancer prevention are outlined and a framework to facilitate patient-centered and evidence-based breast cancer prevention decision making is presented. The framework is intended to encourage a shared decision making approach to prevention decisions, within the context of a woman’s overall health. The inclusion of effective lifestyle interventions makes this framework relevant to most women, and is not exclusive to women at increased risk of developing breast cancer

Tamoxifen may prevent both ER+ and ER- breast cancers and select for ER- carcinogenesis: an alternative hypothesis

Introduction: Breast Cancer Prevention Trial (BCPT) and Multiple Outcomes of Raloxifene (MORE) data have been interpreted to indicate that tamoxifen reduces the risk of ER+ but not ER- breast carcinogenesis. We explored whether these data also support an alternative hypothesis, that tamoxifen influences the natural history of both ER+ and ER- cancers, that it may be equally effective in abrogating or delaying ER- and ER+ carcinogenesis, and place selection pressure, in some cases, for the outgrowth of ER- cancers. Methods: BCPT and MORE data were used to investigate whether: first, tamoxifen could reduce equally the emergence of ER- and ER+ tumors; and second, tamoxifen could select a fraction of emerging ER+ cancers and promote their transformation to ER- cancers. Assuming that some proportion, Z, of ER+ tumors becomes ER- after tamoxifen exposure and that the risk reduction for both ER- and ER+ tumors is equal, we solved for both the transformation rate and the risk reduction rate. Results: If tamoxifen equally reduces the incidence of ER+ and ER- tumors by 60%, the BCPT results are achieved with a transformation of approximately Z = 20% of ER+ to ER- tumors. Validation with MORE data using an equal risk reduction of 60% associated with tamoxifen produces an almost identical transformation rate Z of 23%. Conclusion: Data support an alternative hypothesis that tamoxifen may promote ER- carcinogenesis from a precursor lesion that would otherwise have developed as ER+ without tamoxifen selection

Willingness to test for BRCA1/2 in High Risk Women: Influenced by Risk Perception and Family Experience, rather than by Objective or Subjective Numeracy?

Genetic testing for breast and ovarian cancer can help target prevention programs, and possibly reduce morbidity and mortality. A positive result of BRCA1/2 is a substantial risk factor for breast and ovarian cancer, and its detection often leads to risk reduction interventions such as increased screening, prophylactic mastectomy and oophorectomy. We examined predictors of the decision to undergo cancer related genetic testing: perceived risk, family risk of breast or ovarian cancer, and numeracy as predictors of the decision to test among women at high risk of breast cancer. Stepwise regression analysis of survey responses from 459 women registered in the Cancer Genetics Network revealed greater likelihood to test for women with more family history, higher perceived risk of mutation, or Ashkenazi descent. Neither subjective nor objective numeracy was associated with the decision to test, although we replicated an earlier finding that subjective numeracy predicted willingness to pay for testing. Findings underscore the need for genetic counselling that disentangles risk perception from objective information to promote better decision-making in the context of genetic testing. Highlighting these factors is crucial for public health campaigns, as well as to clinic-based testing and direct-to-consumer testing. (PsycINFO Database Record (c) 2016 APA, all rights reserved

Balancing the presentation of information and options in patient decision aids: An updated review

Background: Standards for patient decision aids require that information and options be presented in a balanced manner; this requirement is based on the argument that balanced presentation is essential to foster informed decision making. If information is presented in an incomplete/non-neutral manner, it can stimulate cognitive biases that can unduly affect individuals' knowledge, perceptions of risks and benefits, and, ultimately, preferences. However, there is little clarity about what constitutes balance, and how it can be determined and enhanced. We conducted a literature review to examine the theoretical and empirical evidence related to balancing the presentation of information and options. Methods: A literature search related to patient decision aids and balance was conducted on Medline, using MeSH terms and PubMed; this search supplemented the 2011 Cochrane Collaboration's review of patient decision aids trials. Only English language articles relevant to patient decision making and addressing the balance of information and options were included. All members of the team independently screened clusters of articles; uncertainties were resolved by seeking review by another member. The team then worked in sub-groups to extract and synthesise data on theory, definitions, and evidence reported in these studies. Results: A total of 40 articles met the inclusion criteria. Of these, six explained the rationale for balancing the presentation of information and options. Twelve defined "balance"; the definition of "balance" that emerged is as follows: "The complete and unbiased presentation of the relevant options and the information about those options-in content and in format-in a way that enables individuals to process this information without bias". Ten of the 40 articles reported assessing the balance of the relevant decision aid. All 10 did so exclusively from the users' or patients' perspective, using a five-point Likert-type scale. Presenting information in a side-by-side display form was associated with more respondents (ranging from 70% to 96%) judging the information as "balanced". Conclusion: There is a need for comparative studies investigating different ways to improve and measure balance in the presentation of information and options in patient decision aids

Parents' Psychological and Decision-Making Outcomes following Prenatal Diagnosis with Complex Congenital Heart Defect: An Exploratory Study

UNLABELLED: Background. Parents with a fetus diagnosed with a complex congenital heart defect (CHD) are at high risk of negative psychological outcomes. Purpose. To explore whether parents' psychological and decision-making outcomes differed based on their treatment decision and fetus/neonate survival status. Methods. We prospectively enrolled parents with a fetus diagnosed with a complex, life-threatening CHD from September 2018 to December 2020. We tested whether parents' psychological and decision-making outcomes 3 months posttreatment differed by treatment choice and survival status. Results. Our sample included 23 parents (average Age[years]: 27 ± 4, range = 21-37). Most were women (n = 18), non-Hispanic White (n = 20), and married (n = 21). Most parents chose surgery (n = 16), with 11 children surviving to the time of the survey; remaining parents (n = 7) chose comfort-directed care. Parents who chose comfort-directed care reported higher distress (x¯ = 1.51, s = 0.75 v. x¯ = 0.74, s = 0.55; Mdifference = 0.77, 95% confidence interval [CI], 0.05-1.48) and perinatal grief (x¯ = 91.86, s = 22.96 v. x¯ = 63.38, s = 20.15; Mdifference = 27.18, 95% CI, 6.20-48.16) than parents who chose surgery, regardless of survival status. Parents who chose comfort-directed care reported higher depression (x¯ = 1.64, s = 0.95 v. x¯ = 0.65, s = 0.49; Mdifference = 0.99, 95% CI, 0.10-1.88) than parents whose child survived following surgery. Parents choosing comfort-directed care reported higher regret (x¯ = 26.43, s = 8.02 v. x¯ = 5.00, s = 7.07; Mdifference = 21.43, 95% CI, 11.59-31.27) and decisional conflict (x¯ = 20.98, s = 10.00 v. x¯ = 3.44, s = 4.74; Mdifference = 17.54, 95% CI; 7.75-27.34) than parents whose child had not survived following surgery. Parents whose child survived following surgery reported lower grief (Mdifference = -19.71; 95% CI, -39.41 to -0.01) than parents whose child had not. Conclusions. The results highlight the potential for interventions and care tailored to parents' treatment decisions and outcomes to support parental coping and well-being. HIGHLIGHTS: Question: Do the psychological and decision-making outcomes of parents differ based on their treatment decision and survival outcome following prenatal diagnosis with complex CHD?Findings: In this exploratory study, parents who decided to pursue comfort-directed care after a prenatal diagnosis reported higher levels of psychological distress and grief as well as higher decisional conflict and regret than parents who decided to pursue surgery.Meaning: The findings from this exploratory study highlight potential differences in parents' psychological and decision-making outcomes following a diagnosis of complex CHD for their fetus, which appear to relate to the treatment approach and the treatment outcome and may require tailoring of psychological and decision support

Subjective but not objective numeracy influences willingness to pay for BRCA1/2 genetic testing

A positive test result for BRCA1/2 gene mutation is a substantial risk factor for breast and ovarian cancer. However, testing is not always covered by insurance, even for high risk women. Variables affecting willingness to pay (WTP) have implications for clinic-based and direct-to-consumer testing. The relative impact of objective and subjective numeracy on WTP, in the context of worry, perceived risk (of having the mutation and developing breast cancer) and family history, was examined in 299 high-risk women, not previously tested for BRCA1/2. Objective and subjective numeracy correlated positively with one another, yet only subjective numeracy correlated (positively) with WTP. This could not be explained by educational level or worry. In line with the numeracy result, other objective factors including family history, age, and Ashkenazi descent were not correlated with WTP. Perceived risk of having a mutation was also correlated with WTP, though perceived risk of developing breast cancer was not, perhaps because it lacks direct connection with testing. Thus, subjective confidence in the ability to interpret test results and perceived risk of a positive test result are more important drivers in paying for BRCA1/2 testing than factors more objective and/or further removed from the testing itself (e.g., perceived risk of developing cancer, family history). Findings underscore the need for genetic counselling that makes probabilistic information accessible and intelligible, so as to build confidence and promote accurate perception of mutation risk and ultimately better decision-making

Evaluating CollaboRATE in a Clinical Setting: Analysis of Mode Effects on Scores, Response Rates and Costs of Data Collection

Shared decision-making (SDM) has become a policy priority, yet its implementation is not routinely assessed. To address this gap we tested the delivery of CollaboRATE, a 3-item patient reported experience measure of SDM, via multiple survey modes.To assess CollaboRATE response rates and respondent characteristics across different modes of administration, impact of mode and patient characteristics on SDM performance and cost of administration per response in a real-world primary care practice.Observational study design, with repeated assessment of SDM performance using CollaboRATE in a primary care clinic over 15 months of data collection. Different modes of administration were introduced sequentially including paper, patient portal, interactive voice response (IVR) call, text message and tablet computer.Consecutive patients ≥18 years, or parents/guardians of patients \u3c18 years, visiting participating primary care clinicians.CollaboRATE assesses three core SDM tasks: (1) explanation about health issues, (2) elicitation of patient preferences and (3) integration of patient preferences into decisions. Responses to each item range from 0 (no effort was made) to 9 (every effort was made). CollaboRATE scores are calculated as the proportion of participants who report a score of nine on each of the three CollaboRATE questions.Scores were sensitive to mode effects: the paper mode had the highest average score (81%) and IVR had the lowest (61%). However, relative clinician performance rankings were stable across the different data collection modes used. Tablet computers administered by research staff had the highest response rate (41%), although this approach was costly. Clinic staff giving paper surveys to patients as they left the clinic had the lowest response rate (12%).CollaboRATE can be introduced using multiple modes of survey delivery while producing consistent clinician rankings. This may allow routine assessment and benchmarking of clinician and clinic SDM performance

Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers

Abstract Background Making evidence-based decisions often requires comparison of two or more options. Research-based evidence may exist which quantifies how likely the outcomes are for each option. Understanding these numeric estimates improves patients’ risk perception and leads to better informed decision making. This paper summarises current “best practices” in communication of evidence-based numeric outcomes for developers of patient decision aids (PtDAs) and other health communication tools. Method An expert consensus group of fourteen researchers from North America, Europe, and Australasia identified eleven main issues in risk communication. Two experts for each issue wrote a “state of the art” summary of best evidence, drawing on the PtDA, health, psychological, and broader scientific literature. In addition, commonly used terms were defined and a set of guiding principles and key messages derived from the results. Results The eleven key components of risk communication were: 1) Presenting the chance an event will occur; 2) Presenting changes in numeric outcomes; 3) Outcome estimates for test and screening decisions; 4) Numeric estimates in context and with evaluative labels; 5) Conveying uncertainty; 6) Visual formats; 7) Tailoring estimates; 8) Formats for understanding outcomes over time; 9) Narrative methods for conveying the chance of an event; 10) Important skills for understanding numerical estimates; and 11) Interactive web-based formats. Guiding principles from the evidence summaries advise that risk communication formats should reflect the task required of the user, should always define a relevant reference class (i.e., denominator) over time, should aim to use a consistent format throughout documents, should avoid “1 in x” formats and variable denominators, consider the magnitude of numbers used and the possibility of format bias, and should take into account the numeracy and graph literacy of the audience. Conclusion A substantial and rapidly expanding evidence base exists for risk communication. Developers of tools to facilitate evidence-based decision making should apply these principles to improve the quality of risk communication in practice.http://deepblue.lib.umich.edu/bitstream/2027.42/116070/1/12911_2013_Article_751.pd