Multi-level Factors Influencing Decisions About Stopping Surveillance Colonoscopy in Older Adults: a Qualitative Study.

BACKGROUND: Little is known about patient or provider experience and perceptions of stopping surveillance among older adults with a history of colon polyps. While guidelines recommend ceasing routine colorectal cancer screening in adults > 75 years and those with limited life expectancy, guidance for ceasing surveillance colonoscopy in those with prior colon polyps suggests individualizing recommendations. OBJECTIVE: Identify processes, experiences, and gaps around individualizing decisions to stop or continue surveillance colonoscopy for older adults and areas for improvement. DESIGN: Phenomenological qualitative study design using recorded semi-structured interviews from May 2020 through March 2021. PARTICIPANTS: 15 patients aged ≥ 65 in polyp surveillance, 12 primary care providers (PCPs), and 13 gastroenterologists (GIs). APPROACH: Data were analyzed using a mixed deductive (directed content analysis) and inductive (grounded theory) approach to identify themes related to stopping or continuing surveillance colonoscopies. KEY RESULTS: Analysis resulted in 24 themes and were clustered into three main categories: health and clinical considerations; communication and roles; and system-level processes or structures. Overall, the study found support for discussions around age 75-80 on stopping surveillance colonoscopy with considerations for health and life expectancy and that PCPs should take a primary role. However, systems and processes for scheduling surveillance colonoscopies largely bypass PCPs which reduces opportunities to both individualize recommendations and facilitate patients' decision-making. CONCLUSIONS: This study identified gaps in processes to implement current guidelines for individualizing surveillance colonoscopy as adults grow older, including opportunities to discuss stopping. Increasing the role of PCPs in polyp surveillance as patients grow older provides more opportunities for individualized recommendations, so patients can consider their own preferences, ask questions, and make a more informed choice for themselves. Changing existing systems and processes and creating supportive tools for shared decision-making specific to older adults with polyps would improve how surveillance colonoscopy is individualized in this population.

Selecting patient-reported outcome measures of health-related quality of life in adult rheumatology: quality and breadth of coverage.

Patient-centered research should assess outcomes important to patients and include patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQOL) domains. Using a well-known HRQOL framework (World Health Organization QOL, or WHOQOL), we reviewed established PROMs used with adults with different types of arthritis to evaluate their HRQOL domain coverage and psychometric evidence to help PROM users select measures and determine whether other measures should be validated and/or developed. Nineteen PROMs and 92 corresponding articles were reviewed to determine which HRQOL domains were assessed. To support a streamlined but rigorous review, we used a rating system based on criteria established in part through existing rubrics (e.g., OMERACT COSMIN). Psychometric properties were rated on a scale from 1 to 18, where 18 was strongest. We examined the intersection between level of domain coverage and extent of psychometric support. Measures most commonly assessed physical health and level of independence, while fewer assessed social relations, environment, and psychological health. No measures assessed spirituality and religion, which may be relevant depending on intended use. PROMs with higher psychometric evidence tended to assess a broader range of HRQOL domains. Rubric scores ranged from 3 to 16, with an average of 9.3. Prominent and psychometrically sound PROMs are available that cover many of the WHOQOL domains. While gaps exist in the domain of spirituality, future work should focus on refining optimal use of existing PROMs relevant for arthritis versus developing new measures. We provide guidance on selecting PROMs, to that end.

Structure and integration of specialty palliative care in three NCI-designated cancer centers: a mixed methods case study.

INTRODUCTION: Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. METHODS: Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites' palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. RESULTS: Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of "favorable" organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. CONCLUSION: Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.

Problematic Integration: Racial Discordance in End-of-Life Decision Making.

We describe racially discordant oncology encounters involving EOL decision-making. Fifty-eight provider interviews were content analyzed using the tenets of problematic integration theory. We found EOL discussions between non-Black providers and their Black patients were often complex and anxiety-inducing. That anxiety consisted of (1) ontological uncertainty in which providers characterized the nature of Black patients as distrustful, especially in the context of clinical trials; (2) ontological and epistemological uncertainty in which provider intercultural incompetency and perceived lack of patient health literacy were normalized and intertwined with provider assumptions about patients' religion and support systems; (3) epistemological uncertainty as ambivalence in which providers' feelings conflicted when deciding whether to speak with family members they perceived as lacking health literacy; (4) divergence in which the provider advised palliative care while the family desired surgery or cancer-directed medical treatment; and (5) impossibility when an ontological uncertainty stance of Black distrust was seen as natural by providers and therefore impossible to change. Some communication strategies used were indirect stereotyping, negotiating, asking a series of value questions, blame-guilt framing, and avoidance. We concluded that provider perceptions of Black distrust, religion, and social support influenced their ability to communicate effectively with patients.

Women's considerations and experiences for breast cancer screening and surveillance during the COVID-19 pandemic in the United States: A focus group study.

The COVID-19 pandemic resulted in numerous changes in delivery of healthcare services, including breast cancer screening and surveillance. Although facilities have implemented a number of strategies to provide services, women's thoughts and experiences related to breast cancer screening and surveillance during a pandemic are not well known. This focus group study with women across seven states recruited through the Breast Cancer Surveillance Consortium aims to remedy this gap in information. Thirty women ranging in age from 31 to 69 participated in five virtual focus groups, eight of whom had prior breast cancer. The first three focus groups covered a range of topics related to screening and surveillance during the pandemic while the last two groups covered experiences and then a review of sample communications to women about screening and surveillance during the pandemic to obtain reactions and recommendations. More than half of the women had screening or surveillance during the pandemic. Coding and analyses resulted in nine themes in three topic areas: decision factors, screening experiences, and preferred communications. Themes included weighing the risks of COVID-19 versus cancer; feelings that screening and surveillance were mostly safe but barriers may be heightened; feeling safe when undergoing screening but receiving a range of pandemic-specific communications from none to a lot; and wanting communications that are personalized, clear and concise. Based on these findings, providers and facilities should assure women of pandemic safety measures, review methods and content of communications, and assess for barriers to screening that may be amplified during the pandemic, including anxiety and access.

Psychometric characteristics of the health care empowerment questionnaire in a sample of patients with arthritis and rheumatic conditions.

BACKGROUND: Patient empowerment can improve health-related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient-reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases. METHODS: The HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test-retest reliability was assessed with sub-sample of participants (n = 182). RESULTS: We found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two-factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test-retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77). CONCLUSIONS: The HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions. PATIENT CONTRIBUTION: Patients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ's use can enable further participation of patients in health care.

Knowledge and Perception of Breast Density, Screening Mammography, and Supplemental Screening: in Search of "Informed".

BACKGROUND: As of 2019, 37 US states have breast density notification laws. No qualitative study to date has examined women's perspectives about breast density in general or by states with and without notification laws. OBJECTIVE: Explore women's knowledge and perceptions of breast density and experiences of breast cancer screening across three states with and without notification laws. DESIGN: Qualitative research design using four focus groups conducted in 2017. PARTICIPANTS: Forty-seven women who had a recent normal mammogram and dense breasts in registry data obtained through the Breast Cancer Surveillance Consortium. APPROACH: Focus groups were 90 min, audio recorded, and transcribed for analysis. Data were analyzed using mixed deductive and inductive coding. KEY RESULTS: Women reported variable knowledge levels of personal breast density and breast density in general, even among women living in states with a notification law. A number of women were aware of the difficulty of detecting cancer with dense breasts, but only one knew that density increased breast cancer risk. Across all states, very few women reported receiving information about breast density during healthcare visits beyond being encouraged to get supplemental imaging or to pay for new mammography technology (i.e., breast tomosynthesis). Women offered more imaging or different technology held strong convictions that these were "better," even though knowledge of differences, effectiveness, or harms across technologies seemed limited. Women from all states expressed a strong desire for more information about breast density. CONCLUSIONS: More research needs to be done to understand how the medical community can best assist women in making informed decisions related to breast density, mammography, and supplemental screening. Options to explore include improved breast density notifications and education materials about breast density, continued development of personalized risk information tools, strategies for providers to discuss evidence and options based on risk stratification, and shared decision-making.

Role of norms in variation in cancer centers' end-of-life quality: qualitative case study protocol.

BACKGROUND: A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer. METHODS: This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data. DISCUSSION: This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer. TRIAL REGISTRATION: Clinicaltrials.gov ; NCT03780816 ; December 19, 2018.

How Do Women View Risk-Based Mammography Screening? A Qualitative Study.

BACKGROUND: Decades of persuasive messages have reinforced the importance of traditional screening mammography at regular intervals. A potential new paradigm, risk-based screening, adjusts mammography frequency based on a woman's estimated breast cancer risk in order to maximize mortality reduction while minimizing false positives and overdiagnosis. Women's views of risk-based screening are unknown. OBJECTIVE: To explore women's views and personal acceptability of a potential risk-based mammography screening paradigm. DESIGN: Four semi-structured focus group discussions about screening mammography and surveys before provision of information about risk-based screening. We analyzed coded focus group transcripts using a mixed deductive (content analysis) and inductive (grounded theory) approach. PARTICIPANTS: Convenience sample of 29 women (40-74 years old) with no personal history of breast cancer recruited by print and online media in New Hampshire and Vermont. RESULTS: Twenty-seven out of 29 women reported having undergone mammography screening. All participants were white and most were highly educated. Some women accepted the idea that early cancer detection with traditional screening was beneficial-although many also reported hearing inconsistent recommendations from clinicians and mixed messages from media reports about mammography. Some women were familiar with a risk-based screening paradigm (primarily related to cervical cancer, n = 8) and thought matching screening mammography frequency to personal risk made sense (n = 8). Personal acceptability of risk-based screening was mixed. Some believed risk-based screening could reduce the harms of false positives and overdiagnosis (n = 7). Others thought screening less often might result in missing a dangerous diagnosis (n = 14). Many (n = 18) expressed concerns about the feasibility of risk-based screening and questioned whether breast cancer risk estimates could be accurate. Some suspected that risk-based mammography was motivated by a desire to save money (n = 6). CONCLUSION: Some women thought risk-based screening made sense. Willingness to abandon traditional screening for the new paradigm was mixed. Broad acceptability of risk-based screening will require clearer communication about its rationale and feasibility and consistent messages from the health care team.

A method to create a standardized generic and condition-specific patient-reported outcome measure for patient care and healthcare improvement.

PURPOSE: Patient-reported outcome measures (PROMs), which are generic or condition-specific, are used for a number of reasons, including clinical care, clinical trials, and in national-level efforts to monitor the quality of health care delivery. Creating PROMs that meet different purposes without overburdening patients, healthcare systems, providers, and data systems is paramount. The objective of this study was to test a generalizable method to incorporate condition-specific issues into generic PROM measures as a first step to producing PROMs that efficiently provide a standardized score. This paper outlines the method and preliminary findings focused on a PROM for osteoarthritis of the knee (OA-K). METHODS: We used a mixed-methods approach and PROMIS® measures to test development of a combined generic and OA-K-specific PROM. Qualitative methods included patient focus groups and provider interviews to identify impacts of OA-K important to patients. We then conducted a thematic analysis and an item gap analysis: identified areas covered by existing generic PROMIS measures, identified "gap" areas not covered, compared gap areas to legacy instruments to verify relevance, and developed new items to address gaps. We then performed cognitive testing on new items and drafted an OA-K-specific instrument based on findings. RESULTS: We identified 52 existing PROMIS items and developed 24 new items across 14 domains. CONCLUSIONS: We developed a process for creating condition-specific instruments that bridge gaps in existing generic measures. If successful, the methodology will create instruments that efficiently gather the patient's perspective while allowing health systems, researchers, and other interested parties to monitor and compare outcomes over time, conditions, and populations.

A Review of Tools to Assist Hospitals in Meeting Community Health Assessment and Implementation Strategy Requirements.

Recent changes in U.S. national policies and regulations have created an opportunity for meaningful collaborations to take place between health systems, public health departments, and social service organizations. For medical systems, and particularly tax-exempt hospitals, new requirements include community health assessments (CHAs) and implementation strategies to address identified health needs. Individuals and groups responsible for meeting the new CHA and implementation strategy requirements may be unsure about the best ways to achieve specific aspects of the CHA process. In this report, we provide an in-depth review and rating of tools developed by public health and community experts that cover the steps necessary to meet the new requirements. A team of three community and public health experts and the authors developed a rating sheet based on a well-known community health improvement process model and on the steps in the new requirements to identify and systematically rate nine comprehensive tools. The ratings and recommendations provide a guide for hospitals in choosing tools that will best assist them in meeting the new requirements.

Translation of an Action Learning Collaborative Model Into a Community-Based Intervention to Promote Physical Activity and Healthy Eating.

UNLABELLED: Action Learning Collaboratives (ALCs), whereby teams apply quality improvement (QI) tools and methods, have successfully improved patient care delivery and outcomes. We adapted and tested the ALC model as a community-based obesity prevention intervention focused on physical activity and healthy eating. METHOD: The intervention used QI tools (e.g., progress monitoring) and team-based activities and was implemented in three communities through nine monthly meetings. To assess process and outcomes, we used a longitudinal repeated-measures and mixed-methods triangulation approach with a quasi-experimental design including objective measures at three time points. RESULTS: Most of the 97 participants were female (85.4%), White (93.8%), and non-Hispanic/Latino (95.9%). Average age was 52 years; 28.0% had annual household income of $20,000 or less; and mean body mass index was 35. Through mixed-effects models, we found some physical activity outcomes improved. Other outcomes did not significantly change. Although participants favorably viewed the QI tools, components of the QI process such as sharing goals and data on progress in teams and during meetings were limited. Participants' requests for more education or activities around physical activity and healthy eating, rather than progress monitoring and data sharing required for QI activities, challenged ALC model implementation. CONCLUSIONS: An ALC model for community-based obesity prevention may be more effective when applied to preexisting teams in community-based organizations.

Safety Net Primary Care Capabilities After the COVID-19 Pandemic.

Importance: Federally qualified health centers (FQHCs) provide care to 30 million patients in the US and have shown better outcomes and processes than other practice types. Little is known about how the COVID-19 pandemic contributed to FQHC capabilities compared with other practices. Objective: To compare postpandemic operational characteristics and capabilities of FQHCs with non-FQHC safety net practices and non-FQHC, non-safety net practices. Design, Setting, and Participants: This nationally representative survey conducted from June 2022 to February 2023 with an oversampling of safety net practices in the US included practice leaders working in stratified random selection of practices based on FQHC status, Area Deprivation Index category, and ownership type per a health care network dataset. Exposures: Practice type: FQHC vs non-FQHC safety net and non-FQHC practices. Main Outcomes and Measures: Primary care capabilities, including 2 measures of access and 11 composite measures. Results: A total of 1245 practices (221 FQHC and 1024 non-FQHC) responded of 3498 practices sampled. FQHCs were more likely to be independently owned and have received COVID-19 funding. FQHCs and non-FQHC safety net practices were more likely to be in rural areas. FQHCs significantly outperformed non-FQHCs on several capabilities even after controlling for practice size and ownership, including behavioral health provision (mean score, 0.53; 95% CI, 0.51-0.56), culturally informed services (mean score, 0.55; 95% CI, 0.53-0.58), screening for social needs (mean score, 0.43; 95% CI, 0.39-0.47), social needs referrals (mean score, 0.53; 95% CI, 0.48-0.57), social needs referral follow-up (mean score, 0.31; 95% CI, 0.27-0.36), and shared decision-making and motivational interviewing training (mean score, 0.53; 95% CI, 0.51-0.56). No differences were found in behavioral and substance use screening, care processes for patients with complex and high levels of need, use of patient-reported outcome measures, decision aid use, or after-hours access. Across all practices, most of the examined capabilities showed room for improvement. Conclusions and Relevance: The results of this survey study suggest that FQHCs outperformed non-FQHC practices on important care processes while serving a patient population with lower incomes who are medically underserved compared with patients in other practice types. Legislation to expand funding for the FQHC program should improve services for underserved populations and target current non-FQHC safety net practices to serve these populations. Increased support for these practices could improve primary care for rural populations.

Assessing and Identifying Improvements for Lung Cancer Screening in a Rural Population: A Human-Centered Design and Systems Approach.

Although lung cancer claims more lives than any other cancer in the United States, screening is severely underutilized, with <6% of eligible patients screened nationally in 2021 versus 76% for breast cancer and 67% for colorectal cancer. This article describes an effort to identify key reasons for the underutilization of lung cancer screening in a rural population and to develop interventions to address these barriers suitable for both a large health system and local community clinics. Data were generated from 26 stakeholder interviews (clinicians, clinical staff, and eligible patients), a review of key systems (Electronic Health Record and billing records), and feedback on the feasibility of several potential interventions by health care system staff. These data informed a human-centered design approach to identify possible interventions within a complex health care system by exposing gaps in care processes and electronic health record platforms that can lead patients to be overlooked for potentially life-saving screening. Deployed interventions included communication efforts focused on (1) increasing patient awareness, (2) improving physician patient identification, and (3) supporting patient management. Preliminary outcomes are discussed.

The effect of computers for weight loss: a systematic review and meta-analysis of randomized trials.

BACKGROUND: The use of computers to deliver education and support strategies has been shown to be effective in a variety of conditions. We conducted a systematic review and meta-analysis to evaluate the impact of computer-based technology on interventions for reducing weight. METHODS: We searched MEDLINE, CENTRAL, CINAHL, PsycINFO, Google Scholar and ClinicalTrials.gov (all updated through June 2010) for randomized controlled trials evaluating the effect of computer-based technology on education or support interventions aimed at reducing weight in overweight or obese adults. We calculated weighted mean differences (WMD) and 95% confidence intervals (CI) using random effects models. RESULTS: Eleven trials with 13 comparisons met inclusion criteria. Based on six comparisons, subjects who received a computer-based intervention as an addition to the standard intervention given to both groups lost significantly more weight (WMD -1.48 kg, 95% CI -2.52, -0.43). Conversely, based on six comparisons, subjects for whom computer-based technology was substituted to deliver an identical or highly comparable intervention to that of the control group lost significantly less weight (WMD 1.47 kg, 95% CI 0.13, 2.81). Significantly different weight loss seen in "addition" comparisons with less than six months of follow-up (WMD -1.95 kg, 95% CI -3.50, -0.40, two comparisons) was not seen in comparisons with longer follow-up (-1.08 kg, 95% CI -2.50, 0.34, four comparisons). Analyses based on quality and publication date did not substantially differ. CONCLUSIONS: While the addition of computer-based technology to weight loss interventions led to statistically greater weight loss, the magnitude (<1.5 kg) was small and unsustained.

Adoption of computer-assisted learning in medical education: the educators' perspective.

CONTEXT: Computer-assisted learning (CAL) in medical education has been shown to be effective in the achievement of learning outcomes, but requires the input of significant resources and development time. This study examines the key elements and processes that led to the widespread adoption of a CAL program in undergraduate medical education, the Computer-assisted Learning in Paediatrics Program (CLIPP). It then considers the relative importance of elements drawn from existing theories and models for technology adoption and other studies on CAL in medical education to inform the future development, implementation and testing of CAL programs in medical education. METHODS: The study used a mixed-methods explanatory design. All paediatric clerkship directors (CDs) using CLIPP were recruited to participate in a self-administered, online questionnaire. Semi-structured interviews were then conducted with a random sample of CDs to further explore the quantitative results. RESULTS: Factors that facilitated adoption included CLIPP's ability to fill gaps in exposure to core clinical problems, the use of a national curriculum, development by CDs, and the meeting of CDs' desires to improve teaching and student learning. An additional facilitating factor was that little time and effort were needed to implement CLIPP within a clerkship. The quantitative findings were mostly corroborated by the qualitative findings. CONCLUSIONS: This study indicates issues that are important in the consideration and future exploration of the development and implementation of CAL programs in medical education. The promise of CAL as a method of enhancing the process and outcomes of medical education, and its cost, increase the need for future CAL funders and developers to pay equal attention to the needs of potential adopters and the development process as they do to the content and tools in the CAL program. Important questions that remain on the optimal design, use and integration of CAL should be addressed in order to adequately inform future development. Support is needed for studies that address these critical areas.

A Procedure for Eliciting Women's Preferences for Breast Cancer Screening Frequency.

BACKGROUND: We evaluate the construct validity of a proposed procedure for eliciting lay preferences among health care policy options, suited for structured surveys. It is illustrated with breast cancer screening, a domain in which people may have heterogeneous preferences. METHODS: Our procedure applies behavioral decision research principles to eliciting preferences among policy options expressed in quantitative terms. Three-hundred women older than 18 y without a history of breast cancer were recruited through Amazon MTurk. Participants evaluated 4 screening options for each of 4 groups of women, with varying risk of breast cancer. Each option was characterized by estimates of 3 primary outcomes: breast cancer deaths, false alarms, and overdiagnosis resulting in unnecessary treatment of cancers that would not progress. These estimates were based on those currently being developed by the Breast Cancer Surveillance Consortium. For each risk group, participants stated how frequently they would wish to receive screening, if the predicted outcomes applied to them. RESULTS: A preregistered test found that preferences were robust enough to be unaffected by the order of introducing and displaying the outcomes. Other tests of construct validity also suggested that respondents generally understood the task and expressed consistent preferences. Those preferences were related to participants' age and mammography history but not to measures of their numeracy, subjective numeracy, or demographics. There was considerable heterogeneity in their preferences. CONCLUSIONS: Members of the public can be engaged more fully in informing future screening guidelines if they evaluate the screening options characterized by the expected health outcomes expressed in quantitative terms. We offer and evaluate such a procedure, in terms of its construct validity with a diverse sample of women. HIGHLIGHTS: A novel survey method for eliciting lay preferences for breast cancer screening is proposed and evaluated in terms of its construct validity.Participants were generally insensitive to irrelevant task features (e.g., order of presentation) and sensitive to relevant ones (e.g., quantitative estimates of breast cancer risk, harms from screening).The proposed method elicits lay preferences in terms that can inform future screening guidelines, potentially improving communication between the public and policy makers.

Patient Empowerment Among Adults With Arthritis: The Case for Emotional Support.

OBJECTIVE: This study aimed to identify differences in patient empowerment based on biopsychosocial patient-reported measures, the magnitude of those differences, and which measures best explain differences in patient empowerment. METHODS: This was a cross-sectional observational study of 6918 adults with arthritis in the US. Data were collected from March 2019 to March 2020 through the Arthritis Foundation Live Yes! INSIGHTS program. Patient empowerment, measured by the Health Care Empowerment Questionnaire, included 2 scales: Patient Information Seeking and Healthcare Interaction Results. Patient-reported outcomes were measured using the Patient Reported Outcomes Measurement Information System (PROMIS)-29 and PROMIS emotional support scale. ANOVA assessed differences between groups, and Spearman rank correlation assessed correlations between variables. Hierarchical regression analysis determined the contributions of sociodemographic characteristics, arthritis type, and patient-reported health measures in explaining patient empowerment (α = 0.05). RESULTS: Empowerment was lower among those who were male, older, less educated, or who had lower income, osteoarthritis, less emotional support, or better physical function, although the effect was small-to-negligible for most of these variables in the final regression models. Empowerment did not differ by race/ethnicity in unadjusted or adjusted analysis. In final regression models, emotional support contributed the most to explaining patient empowerment. CONCLUSION: Emotional support is important for patient empowerment. This suggests that programs that seek to improve patient empowerment should target and measure effects on emotional support.

Women's Breast Cancer Screening Confidence by Screening Modality and Breast Density: A Breast Cancer Surveillance Consortium Survey Study.

Objective: Little is known about women's confidence in their breast cancer screening. We sought to characterize breast cancer screening confidence by imaging modality and clinically assessed breast density. Materials and Methods: We undertook a cross-sectional survey of women ages 40-74 years who received digital mammography (DM), digital breast tomosynthesis (DBT), and/or breast magnetic resonance imaging (MRI) with a normal screening exam in the prior year. The main outcome was women's confidence (Very, Somewhat, A little, Not at all) in their breast cancer screening detecting any cancer. Multivariable logistic regression identified correlates of being very confident in breast cancer screening by screening modality group: Group 1) DM vs. DBT and Group 2) DM or DBT alone vs. with supplemental MRI. Results: Overall, 2329 of 7439 (31.3%) invitees participated, with 30%-61% being very confident in their screening across modality and density subgroups. Having dense versus nondense breasts was associated with lower odds of being very confident (Group 1: odds ratio [OR]: 0.58; 95% confidence interval [CI]: 0.46-0.79; Group 2: OR: 0.56; 95% CI: 0.40-0.79). There were no differences by modality within Group 1, but for Group 2, women undergoing MRI had higher odds of being very confident (OR: 1.69; 95% CI: 1.21-2.37). Other correlates of greater screening confidence were as follows: Group 1-being offered a screening test choice and cost not influencing modality received, and Group 2-decision satisfaction and worry. Conclusions: Women with dense breasts had lower screening confidence regardless of screening modality and those undergoing MRI had higher confidence regardless of density. The importance of informing women about screening options is underscored by observed associations between screening choice, decision satisfaction, and screening confidence. ClinicalTrials.gov: NCT02980848.