Development and Evaluation of a Decision Aid for BRCA Carriers with Breast Cancer

BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA's decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.     

Development of an Interactive Decision Aid for Female BRCA1/BRCA2 Carriers

Shared decision making between patients and providers is becoming increasingly common, particularly when there is no clear preferred course of action. As a result, decision aids are being adopted with growing frequency and have been applied to many medical decision-making issues. One such issue where there is uncertainty is breast cancer risk management among BRCA1/BRCA2 carriers. We present the development of a CD-ROM decision aid to facilitate risk management decision making in this population. Our decision aid was developed with the intention of providing it through a randomized clinical trial. The CD-ROM is a multimedia, interactive intervention which provides information about breast cancer, risks associated with BRCA1 and BRCA2 mutations, risk management options for hereditary breast cancer, and a breast cancer risk management decision aid. The goal of this CD-ROM, offered as an adjunctive intervention, is to reduce decisional conflict and psychological distress and improve comprehension of risk information, decisional satisfaction, medical adherence, and quality of life for this population of women at increased risk for breast cancer.     

Shock,Adjust, Decide: Reproductive Decision Making in Cystic Fibrosis (CF) Carrier Couples—A Qualitative Study

Cystic fibrosis (CF) is the most common recessive condition affecting the White British population. Facilitating reproductive decision making for couples at genetic risk for CF is an important aspect of genetic counseling practice in the UK. The purpose of this study was to explore the reproductive decision making process for 31 members of CF carrier couples (15 men and 16 women) with or without an affected child. The design involved a qualitative approach consisting of semi-structured interviews and data analysis informed by grounded theory methodology. Sex and personal experience of CF were identified as factors that may influence reproductive decision making. Findings suggest these hypotheses: (1) CF carrier couples who have an affected child/pregnancy, are more likely to embark on another pregnancy than couples who have a healthy child from an at-risk pregnancy, and (2) men and women play different roles in the reproductive decision making process. Data analysis resulted in development of a structured framework modeling the reproductive decision making process, which may be helpful in guiding genetic counseling with CF carrier couples and other at risk couples making reproductive decisions.     

Predictors of relationship adjustment among couples coping with a high risk of developing breast/ovarian cancer

This study investigated the association between supportive and collaborative processes and dyadic adjustment in 94 women at increased risk of breast/ovarian cancer and their partners. Participants were recruited through two familial cancer clinics. They completed mailed, self-report questionnaires that included measures of psychological distress, dyadic adjustment (consensus, cohesion and satisfaction) and couple predictor variables (perceived support and team approach). Most couples reported average-to-high levels of consensus, cohesion and satisfaction, with a small proportion of couples (6.4%) reporting scores that reached clinically significant levels of dyadic distress. Greater perceived support was associated with better dyadic consensus and satisfaction, and dyadic cohesion and satisfaction were higher among couples who reported greater use of a team approach. General distress did not moderate the association between dyadic coping and relationship quality. There were no significant relationships between intra-couple congruence on support or team approach, and dyadic adjustment. Most couples had a functional relationship in the face of the current health stressor, although a subgroup may be at elevated risk of negative psychological consequences, including further relationship strain. The results highlight that dyadic coping strategies are important factors involved in the quality of couples' relationship following genetic counselling for breast/ovarian cancer risk.     

Decision making styles and progress in occupational decision making

This study provides a reexamination of the role of different decisional strategies in facilitating progress in occupational decision making. Although the assumptions that a rational decision making style is the preferred mode of vocational functioning has been endorsed in a variety of career theories and interventions, there has been conflicting evidence about the validity of this assumption. To examine the role of different decisional approaches in the progress of making an occupational decision, the rational, intuitive, and dependent decision making style scores of 71 undergraduate students were used to predict progress in occupational decision making. The results of the regression analyses failed to provide support for the assumption that a rational style is the most effective in accomplishing this careerrelated task, but indicated strong support for the conclusion that the use of dependent decisional strategies is damaging, particularly in early stages of the decisional process.     

Development and Evaluation of a Decision Aid About Prenatal Testing for Women of Advanced Maternal Age

Objective: To develop and evaluate a decision aid designed to prepare patients of advanced maternal age for counseling about prenatal diagnostic testing. Setting: A regional genetics center. Design: A before/after study. Interventions: Participants used an audioguided workbook to learn about options and outcomes and to clarify personal risks, values, questions, and predispositions. Subjects: 21 women of advanced maternal age and 17 spouses. Main outcome measures: Knowledge of prenatal testing alternatives, decisional conflict, level of anxiety, and acceptability of the decision aid. Results: After using the decision aid, participants had significantly reduced decisional conflict (uncertainty) and a significant increase in knowledge. There was no effect on state or trait anxiety. More than three-quarters of participants were satisfied with the length, clarity, balance, and acceptability of the decision aid. Conclusions: The decision aid shows promise as a useful aid for preparing couples for counseling.     

Focusing on Patient Needs and Preferences May Improve Genetic Counseling for Colorectal Cancer

During cancer genetic counseling, different items which counselors consider important are discussed. However, relatively little empirical evidence exists regarding the needs and preferences of counselees. In this study needs and preferences were assessed from counselees with a personal and/or family history of colorectal cancer (CRC), who were referred for genetic counseling regarding CRC. They received a slightly modified version of the QUOTE-GENE^ca questionnaire prior to their first visit to the Hereditary Cancer Clinic. Response rate was 60 % (48/80 participants). Counselees rated the importance of 45 items assessing their needs and preferences regarding the content and process of genetic counseling. Participants rated the items regarding discussion of information about their familial CRC risk (100 %) and preventive options (98 %) as important or very important. Fewer participants rated items concerning general information on genetics as important. Sensitive communication during counseling was considered very important by a large percentage of counselees. Generally, no major differences were seen between participants in relation to individual characteristics. Our data suggest that focusing on familial CRC risk and surveillance options, in combination with sensitive communication may lead to better satisfaction with genetic counseling.     

Individual strategy preferences and decisional fit

The present research introduces the concept of decisional fit. A decision maker experiences decisional fit when the individually preferred decision strategy fits the actually applied strategy. In accordance to other fit‐concepts in psychology (e.g., person–environment fit), we expected positive effects of decisional fit. Five studies examine the effects of a fit between the individual preference for intuition and deliberation (PID) and the actually used decision strategy (intuition or deliberation). A comparison of extreme types (according to participants' values on the PID scale) revealed that decisional fit enhances the perceived value of the chosen or evaluated object (Studies 1–3). In Studies 4 and 5, participants experienced less regret after decisional fit. The findings highlight the importance of considering individual differences when comparing intuitive and deliberate decision making, because strategy preferences interact with applied strategies. Copyright © 2008 John Wiley & Sons, Ltd.     

Perceptions of High-Risk Care and Barriers to Care Among Women at Risk for Hereditary Breast and Ovarian Cancer following Genetic Counseling in the Community Setting

Data are limited regarding barriers to care among women, with or at risk for hereditary breast and ovarian cancer (HBOC), following genetic counseling in the community setting. Using a telephone survey, we retrospectively addressed perceptions of post-genetic counseling medical care and barriers to care among 69 at-risk women from the non-academic setting. Of these, all agreed that following cancer screening recommendations was better than not following them; none felt recommendations were too difficult to follow; all believed screening would help keep them healthy; 57% believed screening would prevent cancer. Twenty-five percent noted discomfort with breast imaging; 29% found ovarian cancer screening uncomfortable. Close to a quarter of participants reported difficulty deciding whether or not to undergo risk-reducing mastectomy while 10% noted difficulty deciding for or against bilateral salpingo-oophorectomy. There were no perceived major barriers to care, although 38% felt that screening reminders would be helpful, and 10% needed more help in following through with care. Overall, participants believed that they were benefiting from their post-genetic counseling medical care. This work identified HBOC-related support needs to include: informational resources that promote improved understanding of cancer risk and high-risk management; screening reminder systems; and decision support tools.     

Dispositional optimism as a predictor of men's decision-related distress after localized prostate cancer.

This study investigated prospectively the relationship between optimism, threat appraisal, seeking support and information, cognitive avoidance, physical treatment side effects, and decision-related distress in 111 men with localized prostate cancer. Men were assessed at diagnosis and 2 and 12 months after treatment. Baseline decision-related distress predicted distress 2 and 12 months after treatment. Optimism was a significant prospective and concurrent predictor of decision-related distress, with the effect mediated by proximal cancer threat appraisal. Seeking support and information and cognitive avoidance were not associated with decision-related distress at any time point. For physical treatment side effects, concurrent urinary symptoms were predictive of decision-related distress 2 months after treatment. Results suggest that decision-related distress is generated by similar processes to that of the psychological distress that follows a cancer diagnosis. Screening for men with high decision-related distress for referral to in-depth decision support is suggested. Outcome expectations may present as a therapy target to increase the effectiveness of decisional support that is utility based.     

Decisional strategy determines whether frame influences treatment preferences for medical decisions

Decision makers are influenced by the frame of information such that preferences vary depending on whether survival or mortality data are presented. Research is inconsistent as to whether and how age impacts framing effects. This paper presents two studies that used qualitative analyses of think-aloud protocols to understand how the type of information used in the decision making process varies by frame and age. In Study 1, 40 older adults, age 65 to 89, and 40 younger adults, age 18 to 24, responded to a hypothetical lung cancer scenario in a within-subject design. Participants received both a survival and mortality frame. Qualitative analyses revealed that two main decisional strategies were used by all participants: one strategy reflected a data-driven decisional process, whereas the other reflected an experience-driven process. Age predicted decisional strategy, with older adults less likely to use a data-driven strategy. Frame interacted with strategy to predict treatment choice; only those using a data-driven strategy demonstrated framing effects. In Study 2, 61 older adults, age 65 to 98, and 63 younger adults, age 18 to 30, responded to the same scenarios as in Study 1 in a between-subject design. The results of Study 1 were replicated, with age significantly predicting decisional strategy and frame interacting with strategy to predict treatment choice. Findings suggest that framing effects may be more related to decisional strategy than to age.     

A support group for couples who have terminated a pregnancy after prenatal diagnosis: Recurrent themes and observations

Genetic Counselors are increasingly becoming involved in organizing and facilitating support groups for couples who have terminated a pregnancy because of an abnormal fetal diagnosis. This paper discusses recurrent themes which have emerged in the FATE (Feelings After the Termination Experience) support group which was founded in New Jersey in 1990. By becoming familiar with the issues we have observed in our support group, genetic counselors should be better able to understand and empathize with their patients who make the decision to terminate a much wanted pregnancy. They may also feel better prepared to become involved in organizing and facilitating such support groups.     

Cognitive Diversity and Consensus in Group Decision Making: The Role of Inputs, Processes, and Outcomes

This study contributes to the new and growing body of research on shared cognition by examining how individuals entering a group decision-making context with different perspectives of the issues to be discussed arrive at cognitive consensus. Cognitive consensus refers to similarity among group members regarding how key matters are conceptualized and was operationalized as shared assumptions underlying decision issues in the present research. Utilizing 37 student groups participating in a multi-issue decision-making exercise, the study investigated antecedents and correlates of cognitive consensus. Results revealed that unanimity decision rule groups achieved more cognitive consensus than majority rule groups. In addition, group members inquiring concerning the reasons underlying others' decision preferences, accepting others' viewpoints as legitimate, and incorporating others' perspectives into their own interpretations of the issues was positively related to arriving at a greater degree of cognitive consensus. Cognitive consensus also positively influenced expectations regarding decision implementation and satisfaction.     

Individual differences in preference for risky behaviors during courtship

Engaging in risky behaviors is a sexual signalling strategy that men use to procure mates. The present study investigates men’s preferences for engaging in risky behaviors (along with women’s preferences for their male partner’s risky behavior) within dating couples. We investigated associations between relationship length, self-perceived attractiveness, sociosexuality orientation, and preference for risky behaviors in a sample of 256 couples. Results indicated that men had stronger preferences for risky behaviors than their partner’s ideal preference. Furthermore, relationship length was associated with a decline in women’s preference for their partner’s risk-taking, but not men’s preference for their own risk-taking. Self-perceived attractiveness was negatively associated with risk preference, and sociosexuality orientation was not directly related to risk preference. Female preferences for less intense male risky behaviors could reflect the need of paternal investment which is required for offspring care. Decreased male sexual signalling could account for lower preferences of risky behaviors in females who are involved in longer lasting romantic relationships.     

Implementation in a Changing Landscape: Provider Experiences During Rapid Scaling of Use of Evidence-Based Treatments

This study examined 133 service providers’ perspectives on a rapid shift to mandated evidence-based treatment delivery, utilizing an inductive coding process to capture themes present in their qualitative feedback. The majority of provider comments were negatively valenced, but attitudes varied considerably across response categories: comments regarding practice context and support were nearly uniformly negative, while comments regarding treatment fit and therapeutic consequences were more balanced. Treatment fit was the most commonly cited category; the fit to therapist (e.g., ease of use) subcategory was predominantly positive in contrast with the fit to client (e.g., flexibility) subcategory, which was predominantly negative. Results illustrate the intended and unintended consequences of large-scale implementation efforts on community providers, and may aid implementation researchers and system decision makers optimize the conditions under which community providers are asked to implement evidence-based treatment.     

Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.     

Seeking Balance: Decision Support Needs of Women Without Cancer and a Deleterious BRCA1 or BRCA2 Mutation

Recommendations for women with a deleterious BRCA1 or BRCA2 gene mutation include complex medical approaches related to cancer risk reduction and detection. Current science has not yet fully elucidated decision support needs that women face when living with medical consequences associated with known hereditary cancer risk. The purpose of this study was to describe health communication and decision support needs in healthy women with BRCA1/2 gene mutations. The original researchers completed an interpretive secondary qualitative data analysis of 23 phenomenological narratives collected between 2008 and 2010. The Ottawa Decision Support and Patient Centered Communication frameworks guided the study design and analysis. Women described a pattern wherein breast and ovarian cancer risk, health related recommendations and decisions, and personal values were prioritized over time based on life contexts. Knowing versus acting on cancer risk was not a static process but an ongoing balancing act of considering current and future personal and medical values, further compounded by the complexity of recommendations. Women shared stories of anticipatory, physical and psychosocial consequences of the decision making experience. The findings have potential to generate future research questions and guide intervention development. Importantly, findings indicate a need for ongoing, long-term, support from genetics professionals and decision support interventions, which challenges the current practice paradigm.     

Identifying work preferences among supported workers with severe disabilities: efficiency and accuracy of a preference‐assessment protocol

Despite considerable research on assessing preferences among people with severe disabilities, relatively little investigatory attention has been directed to preferences in supported work situations. We evaluated a protocol for identifying work preferences among adults with severe disabilities in supported jobs. The protocol involved obtaining opinions of support staff regarding most and least preferred tasks of a supported worker, conducting a multi‐task preference assessment and then if necessary, a paired‐task assessment for workers for whom the former assessment did not reveal work preferences. For the 12 participating workers, the multi‐task assessment revealed preferences for 7 of the workers and subsequently, the paired‐task assessment revealed preferences for 4 of the 5 remaining workers. The former assessment required 40% less time than the latter. Staff opinion required much less time to obtain, but accurately identified preferences (based on validation through systematic assessment) only somewhat consistently. Results are discussed regarding guidelines for efficiently identifying supported work preferences, and future research areas are noted for developing more definitive guidelines. Copyright © 2007 John Wiley & Sons, Ltd.     

Acceptability of,and Information Needs Regarding,Next-Generation Sequencing in People Tested for Hereditary Cancer: A Qualitative Study

Next generation sequencing (NGS) for patients at risk of hereditary cancer syndromes can also identify non-cancer related mutations, as well as variants of unknown significance. This study aimed to determine what benefits and shortcomings patients perceive in relation to NGS, as well as their interest and information preferences in regards to such testing. Eligible patients had previously received inconclusive results from clinical mutation testing for cancer susceptibility. Semi-structured telephone interviews were subjected to qualitative analysis guided by the approach developed by Miles and Huberman. The majority of the 19 participants reported they would be interested in panel/genomic testing. Advantages identified included that it would enable better preparation and allow implementation of individualized preventative strategies, with few disadvantages mentioned. Almost all participants said they would want all results, not just those related to their previous diagnosis. Participants felt that a face-to-face discussion supplemented by an information booklet would be the best way to convey information and achieve informed consent. All participants wanted their information stored and reviewed in accordance with new developments. Although the findings indicate strong interest among these individuals, it seems that the consent process, and the interpretation and communication of results will be areas that will require revision to meet the needs of patients.