Risk-management decision-making data from a community-based sample of racially diverse women at high risk of breast cancer: rationale, methods, and sample characteristics of the Daughter Sister Mother Project survey.

BACKGROUND: To understand the dynamics that limit use of risk-management options by women at high risk of breast cancer, there is a critical need for research that focuses on patient perspectives. Prior research has left important gaps: exclusion of high-risk women not in risk-related clinical care, exclusion of non-white populations, and lack of attention to the decision-making processes that underlie risk-management choices. Our objective was to create a more inclusive dataset to facilitate research to address disparities related to decision making for breast cancer risk management. METHODS: The Daughter Sister Mother Project survey collects comprehensive information about the experiences of women at high risk of breast cancer. We collected novel measures of feelings about and reactions to cancer screenings; knowledge, barriers, and facilitators of risk-management options; beliefs related to cancer risk and risk management; and involvement with loved ones who had cancer. Eligible individuals were non-Hispanic white and non-Hispanic Black adult women who self-identified as having high risk of breast cancer and had no personal history of cancer. Between October 2018 and August 2019, 1053 respondents completed the online survey. Of these, 717 were confirmed through risk prediction modeling to have a lifetime breast cancer risk of ≥ 20%. Sociodemographic characteristics of this sample were compared to those of nationally representative samples of the US population: the 2019 Health Information National Trends Survey and the Pew Research Center report: Jewish Americans in 2020. RESULTS: The sample of 717 women at objectively high risk of breast cancer was largely (95%) recruited from non-clinical sources. Of these respondents, only 31% had seen a genetic counselor, 34% had had genetic testing specific to breast cancer risk, and 35% had seen at least one breast or cancer care specialist. The sample includes 35% Black respondents and 8% with Ashkenazi Jewish ancestry. Although encompassing a substantial range of ages, incomes, and education levels, respondents are overall somewhat younger, higher-income, and more educated than the US population as a whole. CONCLUSIONS: The DSM dataset offers comprehensive data from a community-based, diverse sample of women at high risk of breast cancer. The dataset includes substantial proportions of Black and Ashkenazi Jewish women and women who are not already in clinical care related to their breast cancer risk. This sample will facilitate future studies of risk-management behaviors among women who are and are not receiving high-risk care, and of variations in risk-management experiences across race and ethnicity.

Profiles of women's adjustment after cancer based on sexual and psychosocial wellbeing: results of a cluster analysis.

BACKGROUND: Sexual wellbeing is a critical yet often overlooked aspect of overall wellbeing for women across cancer diagnoses. OBJECTIVE: We identified profiles of women cancer survivors by sexual and psychosocial outcomes and compared groups for differences in relevant outcomes and individual characteristics. METHODS: Partnered women treated for cancer (n = 226; M age = 51.1 (12.6); 54% breast cancer; 86% White) completed a cross-sectional survey assessing sexual and psychosocial wellbeing. K-means cluster analysis modeled subgroups (clusters) with similar response patterns on measures of sexual wellbeing (sexual function, distress, sexual communication, and self-efficacy for communication), psychosocial wellbeing (quality of life (QOL), anxiety and depressive symptoms), and time since treatment. ANOVAs with Tukey post-hoc analyses and chi-square analyses tested cluster mean differences. RESULTS: Three distinct clusters of women differed by levels of adjustment in sexual and psychosocial wellbeing: higher-adjustment (32.7%), intermediate (37.6%), and lower-adjustment (29.6%). Significant differences among the clusters were found for all outcomes, with largest effect sizes for sexual distress (η2p = 0.66), sexual communication (η2p = 0.51), sexual satisfaction (η2p = 0.44), and anxiety and self-efficacy for communication (η2p = 0.32). The intermediate adjustment group was characterized by lower adjustment on measures of sexual and relationship function, and better adjustment on measures of QOL and mood. CONCLUSIONS: Findings suggest that for women cancer survivors, measures of sexual and psychosocial wellbeing can model distinct profiles to inform targeted interventions to meet women's needs. Evidence-based targeted interventions could lead to better sexual function, and ultimately to better QOL and overall wellbeing. IMPLICATIONS FOR PRACTICE: A stepped intervention approach to sexual health care for women with cancer, where content and format depend on degree of sexual and psychosocial adjustment after cancer, may be most appropriate. Interdisciplinary teams may address sexual, emotional, and relationship functioning.

Challenges of Cognitive Interviewing in Sensitive Health Topic Research.

BACKGROUND: Cognitive interviewing is a qualitative methodology for generating valid, reliable patient-centered outcome measures. There are challenges inherent in research on sensitive topics that require thoughtful approach by the scientist for data collection methods, analysis, and interpretation. OBJECTIVE: The purpose of this article is to provide principles of cognitive interviewing for sensitive health topics. METHODS: We review the challenges inherent in cognitive interviewing for sensitive topics scale development. We illustrate adaptations to general cognitive interviewing for sensitive topics through the presentation and analysis of a research exemplar. RESULTS: Researchers must consider threats to quality of sensitive topic data collection and potential harms to participants and researchers. We provide specific examples of how these risks were mitigated in a sensitive topic scale development study. DISCUSSION: Unique challenges of cognitive interviewing for sensitive health topics can be addressed with a well-planned data collection strategy, anticipating participant safety concerns, and consideration to researcher well-being.

The Self-Efficacy to Communicate about Sex and Intimacy (SECSI) scale: psychometric assessment in women treated for cancer.

PURPOSE: The purpose of this study was to conduct a preliminary validation of the psychometric performance of the newly developed Self-Efficacy to Communicate about Sex and Intimacy (SECSI) scale in a sample of women treated for cancer. METHODS: Partnered women (n = 250) who had received treatment for cancer completed an online survey that included the SECSI scale and measures of health-related quality of life, depression, anxiety, sexual function, sexual distress, self-efficacy for sexual functioning, sexual behaviors, relationship satisfaction, and satisfaction with sexual communication. Sociodemographic and clinical cancer characteristics data were collected. RESULTS: High internal consistency and strong test-retest reliability of the SECSI scale were shown with a Cronbach's alpha coefficient of 0.94 and test-retest reliability of r = 0.82, respectively. Construct validity of the SECSI scale, including discriminant, convergent, and divergent validity, was supported except regarding hypothesized relationships between SECSI scores and participant age and time since treatment. CONCLUSIONS: The SECSI scale is a valid, reliable measure for use with partnered women treated for cancer. Clinicians working with cancer survivors who may be at risk for difficulties communicating about sex and intimacy needs after cancer treatment may use this scale to identify women who would benefit from interventions to increase their confidence to communicate with their partner. The SECSI scale fills an important gap in ability to assess self-efficacy to communicate about sex and intimacy.

Decision making for breast cancer prevention among women at elevated risk.

Several medical management approaches have been shown to be effective in preventing breast cancer and detecting it early among women at elevated risk: 1) prophylactic mastectomy; 2) prophylactic oophorectomy; 3) chemoprevention; and 4) enhanced screening routines. To varying extents, however, these approaches are substantially underused relative to clinical practice recommendations. This article reviews the existing research on the uptake of these prevention approaches, the characteristics of women who are likely to use various methods, and the decision-making processes that underlie the differing choices of women. It also highlights important areas for future research, detailing the types of studies that are particularly needed in four key areas: documenting women's perspectives on their own perceptions of risk and prevention decisions; explicit comparisons of available prevention pathways and their likely health effects; the psychological, interpersonal, and social processes of prevention decision making; and the dynamics of subgroup variation. Ultimately, this research could support the development of interventions that more fully empower women to make informed and values-consistent decisions, and to move towards favorable health outcomes.

Frequency of Diet and Physical Activity Goal Attainment and Barriers Encountered Among Adults With Type 2 Diabetes During a Telephone Coaching Intervention.

IN BRIEF Participants with type 2 diabetes established personalized dietary and physical activity goals as behavioral strategies to reduce cardiovascular risk during a 16-week telephone coaching intervention. People were most likely to attain dietary goals that involved altering the intake of specific foods rather than certain nutrients and were more successful at physical activity goals to increase activity levels rather than to add new types of activity. Barriers to goal success included time management, physical limitations/illness, and social/cultural activities.

Establishing the effectiveness of patient decision aids: key constructs and measurement instruments.

BACKGROUND: Establishing the effectiveness of patient decision aids (PtDA) requires evidence that PtDAs improve the quality of the decision-making process and the quality of the choice made, or decision quality. The aim of this paper is to review the theoretical and empirical evidence for PtDA effectiveness and discuss emerging practical and research issues in the measurement of effectiveness. METHODS: This updated overview incorporates: a) an examination of the instruments used to measure five key decision-making process constructs (i.e., recognize decision, feel informed about options and outcomes, feel clear about goals and preferences, discuss goals and preferences with health care provider, and be involved in decisions) and decision quality constructs (i.e., knowledge, realistic expectations, values-choice agreement) within the 86 trials in the Cochrane review; and b) a summary of the 2011 Cochrane Collaboration's review of PtDAs for these key constructs. Data on the constructs and instruments used were extracted independently by two authors from the 86 trials and any disagreements were resolved by discussion, with adjudication by a third party where required. RESULTS: The 86 studies provide considerable evidence that PtDAs improve the decision-making process and decision quality. A majority of the studies (76/86; 88%) measured at least one of the key decision-making process or decision quality constructs. Seventeen different measurement instruments were used to measure decision-making process constructs, but no single instrument covered all five constructs. The Decisional Conflict Scale was most commonly used (n = 47), followed by the Control Preference Scale (n = 9). Many studies reported one or more constructs of decision quality, including knowledge (n = 59), realistic expectation of risks and benefits (n = 21), and values-choice agreement (n = 13). There was considerable variability in how values-choice agreement was defined and determined. No study reported on all key decision-making process and decision quality constructs. CONCLUSIONS: Evidence of PtDA effectiveness in improving the quality of the decision-making process and decision quality is strong and growing. There is not, however, consensus or standardization of measurement for either the decision-making process or decision quality. Additional work is needed to develop and evaluate measurement instruments and further explore theoretical issues to advance future research on PtDA effectiveness.

Development and initial validation of a complementary and alternative medicine (CAM) knowledge instrument.

BACKGROUND AND PURPOSE: Many patients with cancer use complementary and alternative medicine (CAM) therapies without essential knowledge to inform their decisions. A CAM knowledge instrument was developed and tested for initial validation. METHODS: There were 20 items developed and refined via cognitive interviewing. The instrument was mailed to 800 breast cancer survivors, and mailed again 2 weeks later to assess test-retest reliability. RESULTS: Exploratory factor analysis (EFA) revealed 13 items forming a unidimensional scale. A 2-factor solution was also plausible. One factor consisted of 7 items on knowledge about specific features of CAM, and a second 6-item factor on knowledge of regulatory issues. CONCLUSIONS: Based on factor-analytic validity considerations, the 13-item instrument can be used, or the 2 subscales can be used if a more detailed examination of knowledge is desired.

Automating Perioperative Inventory Management: A Quality Improvement Project.

Preference cards are a foundation for perioperative inventory management processes; however, they can add to nurses' perceived workload, introduce variability into supply management processes, and increase costs. The purpose of this quality improvement project was to implement an automated perioperative inventory management system to decrease nurses' workload and increase their efficiency. Goals included improving preference card accuracy, decreasing add-on supplies, and decreasing the supply costs for each procedure. Using a preintervention-postintervention survey design, the project team evaluated the outcomes of workload, preference card accuracy, add-on supplies, and procedural cost. Nurses' perception of workload decreased in the supply management processes and cost of supplies categories and increased in the documenting supply use category. A four-month 7.7% improvement in preference card accuracy reduced the average procedure supply cost by $86.72 for each procedure and saved the hospital $260,467. The number of add-on supplies was reduced by 4,177 for a 20% reduction.

Racial differences in prevention decision making among U.S. women at high risk of breast cancer: A qualitative study.

PURPOSE: Women at high risk of breast cancer face complex decisions about how to manage those risks. Substantial gaps in current knowledge include how women make these decisions and how decision making may differ across sub-populations. Among these critical gaps are the questions of (a) whether racial differences exist between the experiences of high-risk women navigating breast cancer risk, and (b) what consequences those racial differences might have on women's ability to manage their cancer risks. The present study is designed to address these questions directly. METHODS: Fifty semi-structured interviews were conducted with high-risk Black (n = 20) and white women (n = 30) between May 2015 and March 2016 in person in Ohio and by phone. Transcribed data were analyzed using grounded theory methods. MAIN FINDINGS: Our analyses suggest that many of the core decision-making dynamics high-risk women navigate differ by race. The experiences of white and Black women in our study differ in terms of (a) contextualizing risk-how women make sense of their own breast cancer risk, the degree to which they worry about risk, and how they prioritize risk within the contexts of their broader lives; (b) conceptualizing risk management-how, how much, and from whom women learn about and conceptualize their options for preventing cancer and/or ensuring that cancer gets diagnosed early; and (c) constraints-the external barriers women face throughout their decision-making and risk-management processes. In sum, the Black women we interviewed reported feeling less well-situated to consider and cope actively with breast cancer risk, less well-informed about risk-management options, and more constrained in their use of these options. CONCLUSIONS: High-risk women's accounts of the complex dynamics that shape breast cancer prevention decisions suggest that these dynamics vary substantially by race, such that Black women may experience disadvantages relative to whites.

Shared decision-making for youth psychotherapy: A preliminary randomized clinical trial on facilitating personalized treatment.

OBJECTIVE: Engaging youth and caregivers as active collaborators in the treatment planning process is a patient-centered approach with the potential to facilitate the personalization of established evidence-based treatments. This study is the first randomized clinical trial to evaluate shared decision-making (SDM) to plan youth psychotherapy. METHOD: Forty youth (7-15 years; 33% ethnic minority) were randomly assigned to psychosocial treatment planned using SDM (n = 20) or planned primarily by the clinician (n = 20). In the SDM condition, clinicians guided youth and caregivers through a collaborative treatment planning process that relies on research findings to inform three primary decisions: (a) treatment target problem(s), (b) treatment participants, and (c) treatment techniques. Assessments occurred at baseline, following treatment planning, midtreatment, and post-treatment. RESULTS: Youth and caregivers in the SDM condition reported significantly greater involvement in the treatment planning process compared to their counterparts in the clinician-guided condition (U = 123.00, p = .037; U = 84.50, p = .014, respectively) and SDM caregivers reported significantly lower decisional conflict (U = 72.00, p = .004) and decisional regret (U = 73.50, p = .020). Supporting the feasibility of successful SDM implementation, there were no significant differences between conditions on treatment length, satisfaction with decisions, or engagement. There were no significant diagnostic or symptom differences between conditions. CONCLUSIONS: Planning psychosocial treatments in collaboration with youth and caregivers is a promising way to support youth and caregiver autonomy and plan evidence-based treatments that are responsive to patient preferences, culture, and values. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Patient Perspectives on Defining Textbook Outcomes Following Major Abdominal Surgery.

BACKGROUND: The composite metric textbook outcome (TO) has recently gained interest as a novel quality measure. However, the criteria for defining a TO have not been rigorously defined and patient perspectives on the characteristics of TO are unknown. METHODS: Patients who underwent major abdominal surgery at a single tertiary care center were administered a customized survey designed to ascertain their perspectives on defining TOs. The relationship between patient-reported and clinically defined TO rates was compared. RESULTS: Among 79 patients who underwent gastrointestinal (51%), pancreatic (29%), hepatic (18%), or other major abdominal (3%) operations, 57% were female and 86% had an ASA class ≥3. Most patients underwent surgery for malignancy (87%) with 60% undergoing an open operation. Patients most commonly valued no mortality following surgery (96%), no reoperation (75%), and having a margin negative resection (73%) as "extremely important." In contrast, those outcomes that were most commonly valued as "not important at all" or "minimally important" were receiving a blood transfusion (24%) and not having any complications (13%). Using previously published criteria for TOs, 47 (60%) patients were classified as having a clinically defined TO; in contrast, 68 patients (86%) self-reported their outcome was textbook. Self-reported responses were concordant with clinically defined TO criteria 63% of the time (McNemar's test: S=15.2, p<0.01, evidence of disagreement). CONCLUSION: There was significant discordance between patient-reported versus clinically defined measures of TOs, suggesting patients value other considerations beyond traditional factors when evaluating the success of their surgery. Future studies should delineate these relationships and incorporate these factors to refine TO definitions.

Registered nurses' judgments of the classification and risk level of patient care errors.

As frontline clinicians, nurses play a critical role in mitigating patient harm, recovery from health care errors, and overall improvement of patient safety. This cross-sectional study asked nurse respondents to make judgments about the classification and severity of errors in 4 clinical vignettes. Our results showed that agreement about error classification and associated risk among registered nurses is less than optimal. Further research is needed to advance our understanding of how nurses working in complex patient care situations can improve their ability to recognize subtle cues to facilitate early recognition of potential errors.

Understanding of Health-related Decision-making Terminology Among Cancer Caregivers.

Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.

Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids.

BACKGROUND: In 2014, a systematic review found large gaps in the quality of reporting of measures used in 86 published trials evaluating the effectiveness of patient decision aids (PtDAs). The purpose of this study was to update that review. METHODS: We examined measures of decision making used in 49 randomized controlled trials included in the 2014 and 2017 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 paired reviewers. RESULTS: Information from 273 measures was abstracted, and 109 of these covered the core domains of decision processes (n = 55) and decision quality including informed choice/knowledge (n = 48) and values-choice concordance (n = 12). Very few studies reported data on the performance and clinical sensibility of measures, with reliability (23%) and validity (6%) being the most common. Studies using new measures were less likely to include information about their psychometric performance compared with previously published measures. LIMITATIONS: The review was limited to reporting of measures in studies included in the Cochrane review and did not consult prior publications. CONCLUSION: There continues to be very little reported about the development or performance of measures used to evaluate the effectiveness of PtDAs in published trials. Minimum reporting standards have been published, and efforts to require investigators to use them are needed.

Clarifying Values: An Updated and Expanded Systematic Review and Meta-Analysis.

BACKGROUND: Patient decision aids should help people make evidence-informed decisions aligned with their values. There is limited guidance about how to achieve such alignment. PURPOSE: To describe the range of values clarification methods available to patient decision aid developers, synthesize evidence regarding their relative merits, and foster collection of evidence by offering researchers a proposed set of outcomes to report when evaluating the effects of values clarification methods. DATA SOURCES: MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, and CINAHL. STUDY SELECTION: We included articles that described randomized trials of 1 or more explicit values clarification methods. From 30,648 records screened, we identified 33 articles describing trials of 43 values clarification methods. DATA EXTRACTION: Two independent reviewers extracted details about each values clarification method and its evaluation. DATA SYNTHESIS: Compared to control conditions or to implicit values clarification methods, explicit values clarification methods decreased the frequency of values-incongruent choices (risk difference, -0.04; 95% confidence interval [CI], -0.06 to -0.02; P < 0.001) and decisional conflict (standardized mean difference, -0.20; 95% CI, -0.29 to -0.11; P < 0.001). Multicriteria decision analysis led to more values-congruent decisions than other values clarification methods (χ2 = 9.25, P = 0.01). There were no differences between different values clarification methods regarding decisional conflict (χ2 = 6.08, P = 0.05). LIMITATIONS: Some meta-analyses had high heterogeneity. We grouped values clarification methods into broad categories. CONCLUSIONS: Current evidence suggests patient decision aids should include an explicit values clarification method. Developers may wish to specifically consider multicriteria decision analysis. Future evaluations of values clarification methods should report their effects on decisional conflict, decisions made, values congruence, and decisional regret.

Complementary and alternative medicine use, spending, and quality of life in early stage breast cancer.

BACKGROUND: Up to 80% of women with breast cancer use complementary and alternative medicine (CAM) therapies to improve quality of life (QOL) during treatment. OBJECTIVE: The objective of this study was to explore the association between CAM therapy use, spending on CAM therapies, demographic variables, surgical treatment, and QOL. METHODS: A secondary analysis was conducted for women with early stage breast cancer (N = 222) who were enrolled in a nursing intervention study after breast surgery. The complementary therapy utilization instrument included specific CAM therapies used, number of treatments, and spending. The number of major categories of CAM and the specific CAM therapies used were analyzed in relation to study variables using proportional odds logistic regression models. The outcome of spending for major CAM categories was analyzed using linear mixed effects modeling. RESULTS: A majority of women (56.8%) used at least one CAM therapy, and the biologically based therapies category was most frequently used (43.7%). Women with less than a college level of education were less likely to use CAM (odds ratio [OR] = 0.36, 95% confidence interval [CI] = 0.15-0.86, p < .01). Women who were employed were more likely to use therapies from multiple CAM categories (OR = 2.42, 95% CI = 1.00-5.88, p < .05), and those with lower QOL were more likely to use CAM (OR = 0.97, 95% CI = 0.95-0.99, p < .01). The results support that women with early stage breast cancer, especially those with lower QOL, are highly likely to use CAM therapies. Further research is needed on CAM interventions to enhance supportive care for breast cancer.

Neoadjuvant therapy for resectable pancreatic ductal adenocarcinoma: The need for patient-centered research.

Pancreatic ductal adenocarcinoma is an aggressive cancer with high recurrence rates following surgical resection. While adjuvant chemotherapy improves survival, a significant proportion of patients are unable to initiate or complete all intended therapy following pancreatectomy due to postoperative complications or poor performance status. The administration of chemotherapy prior to surgical resection is an alternative strategy that ensures its early and near universal delivery as well as improves margin-negative resection rates and potentially improves long-term survival outcomes. Neoadjuvant therapy is increasingly being recommended to patients with pancreatic ductal adenocarcinoma, however, patient-centered research on its use is lacking. In this review, we highlight opportunities to focus research efforts in the domains of patient preferences, patient-reported outcomes, patient experience, and survivorship. Novel research in these areas may identify relevant barriers and facilitators to the use of neoadjuvant therapy thereby increasing its utilization, improve shared-decision making for patients and providers, and optimize the experience of those undergoing neoadjuvant therapy.

Experiencing the cancer of a loved one influences decision-making for breast cancer prevention.

Prior research demonstrates that family history influences breast cancer prevention decisions among healthy women at elevated risk of the disease. Drawing on in-depth interviews with 50 African American and White women, this study reveals an important psychological mechanism of this relationship: exposure to cancer among loved ones. Four distinct categories of cancer exposure (Abstract, Generalized, Practical, and Traumatic), distinguished by the characteristics of women's experiences with cancer among family members and close friends, are associated with differences in knowledge and decisions about breast cancer prevention options. Racial differences and distinct experiences among those with BRCA mutations are also discussed.

On Best Interests: A Case for Clinical Ethics Consultation.

Surrogate health care decision making is often a challenge for everyone involved. In the case of incapacitated patients, family members, nurses, health care providers, and other members of the health care team often grapple with determining the most appropriate clinical course of action. For these difficult patient scenarios, the expertise of clinical ethics consultants is sought to assist with complex health care decision making. Clinical ethics consultation is designed to provide a more objective "outside" opinion and offer advice to the patient, family, and entire care team to support and guide decisions. Nurses are well positioned to initiate assistance from Clinical Ethics Consult Services in support of patient and family advocacy. This article presents a case analysis based on the Stakeholder, Facts, Norms, and Options Framework to analyze the best interest course of action for Mr K., a patient diagnosed with abdominal pain due to end-stage liver cirrhosis and who lacks decisional capacity in regard to his own treatment decision making. The case analysis highlights specific examples of how nurses can provide information, facilitate discussion, and otherwise support patients and families to achieve best interest outcomes.