Comparative Assessment of Patient Preferences and Tolerability in Barrett Esophagus Screening: Results From a Randomized Trial.

GOALS: To determine patient preference for the Barrett esophagus (BE) screening techniques. BACKGROUND: Sedated esophagogastroduodenoscopy (sEGD) and unsedated transnasal endoscopy (uTNE) are both potential techniques for BE screening. However, systematic assessment of patient preference for these 2 techniques is lacking. As part of a comparative effectiveness randomized trial of BE screening modalities, we measured short-term patient preferences for the following approaches: in-clinic uTNE (huTNE), mobile-based uTNE (muTNE), and sEGD using a novel assessment instrument. STUDY: Consenting community patients without known BE were randomly assigned to receive huTNE, muTNE, or sEGD, followed by a telephone administered preference and tolerability assessment instrument 24 hours after study procedures. Patient preference was measured by the waiting trade-off method. RESULTS: In total, 201 patients completed screening with huTNE (n=71), muTNE (n=71), or sEGD (n=59), and a telephone interview. Patients' preferences for sEGD and uTNE using the waiting trade-off method were comparable (P=0.51). Although tolerability scores were superior for sEGD (P<0.001) compared with uTNE, scores for uTNE examinations were acceptable. CONCLUSIONS: Patient preference is comparable between sEGD and uTNE for diagnostic examinations conducted in an endoscopy suite or in a mobile setting. Given acceptable tolerability, uTNE may be a viable alternative to sEGD for BE screening.

Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden.

PURPOSE: The purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden-the Patient Experience with Treatment and Self-management (PETS). METHODS: A conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation. RESULTS: A total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79-0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01). CONCLUSION: A comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.

A model of self-directed learning in internal medicine residency: a qualitative study using grounded theory.

BACKGROUND: Existing theories of self-directed learning (SDL) have emphasized the importance of process, personal, and contextual factors. Previous medical education research has largely focused on the process of SDL. We explored the experience with and perception of SDL among internal medicine residents to gain understanding of the personal and contextual factors of SDL in graduate medical education. METHODS: Using a constructivist grounded theory approach, we conducted 7 focus group interviews with 46 internal medicine residents at an academic medical center. We processed the data by using open coding and writing analytic memos. Team members organized open codes to create axial codes, which were applied to all transcripts. Guided by a previous model of SDL, we developed a theoretical model that was revised through constant comparison with new data as they were collected, and we refined the theory until it had adequate explanatory power and was appropriately grounded in the experiences of residents. RESULTS: We developed a theoretical model of SDL to explain the process, personal, and contextual factors affecting SDL during residency training. The process of SDL began with a trigger that uncovered a knowledge gap. Residents progressed to formulating learning objectives, using resources, applying knowledge, and evaluating learning. Personal factors included motivations, individual characteristics, and the change in approach to SDL over time. Contextual factors included the need for external guidance, the influence of residency program structure and culture, and the presence of contextual barriers. CONCLUSIONS: We developed a theoretical model of SDL in medical education that can be used to promote and assess resident SDL through understanding the process, person, and context of SDL.

Out of context: clinical practice guidelines and patients with multiple chronic conditions: a systematic review.

BACKGROUND: Poor fidelity to practice guidelines in the care of people with multiple chronic conditions (MCC) may result from patients and clinicians struggling to apply recommendations that do not consider the interplay of MCC, socio-personal context, and patient preferences. OBJECTIVE: The objective of the study was to assess the quality of guideline development and the extent to which guidelines take into account 3 important factors: the impact of MCC, patients' socio-personal contexts, and patients' personal values and preferences. RESEARCH DESIGN: We conducted a systematic search of clinical practice guidelines for patients with type 2 diabetes mellitus published between 2006 and 2012. Ovid Medline In-Process & Other Non-Indexed Citations, Ovid MEDLINE, Ovid EMBASE, Scopus, EBSCO CINAHL, and the National Guideline Clearinghouse were searched. Two reviewers working independently selected studies, extracted data, and evaluated the quality of the guidelines. RESULTS: We found 28 eligible guidelines, which, on average, had major methodological limitations (AGREE II mean score 3.8 of 7, SD=1.6). Patients or methodologists were not included in the guideline development process in 20 (71%) and 24 (86%) guidelines, respectively. There was a complete absence of incorporating the impact of MCC, socio-personal context, and patient preferences in 8 (29%), 11 (39%), and 16 (57%) of the 28 guidelines, respectively. When mentioned, MCC were considered biologically, but not as contributors of complexity or patient work or as motivation to focus on patient-centered outcomes. CONCLUSIONS: Extant clinical practice guidelines for one chronic disease sometimes consider the context of the patient with that disease, but only do so narrowly. Guideline panels must remove their contextual blinders if they want to practically guide the care of patients with MCC.

Controlling health costs: physician responses to patient expectations for medical care.

BACKGROUND: Physicians have dual responsibilities to make medical decisions that serve their patients' best interests but also utilize health care resources wisely. Their ability to practice cost-consciously is particularly challenged when faced with patient expectations or requests for medical services that may be unnecessary. OBJECTIVE: To understand how physicians consider health care resources and the strategies they use to exercise cost-consciousness in response to patient expectations and requests for medical care. DESIGN: Exploratory, qualitative focus groups of practicing physicians were conducted. Participants were encouraged to discuss their perceptions of resource constraints, and experiences with redundant, unnecessary and marginally beneficial services, and were asked about patient requests or expectations for particular services. PARTICIPANTS: Sixty-two physicians representing a variety of specialties and practice types participated in nine focus groups in Michigan, Ohio, and Minnesota in 2012 MEASUREMENTS: Iterative thematic content analysis of focus group transcripts PRINCIPAL FINDINGS: Physicians reported making trade-offs between a variety of financial and nonfinancial resources, considering not only the relative cost of medical decisions and alternative services, but the time and convenience of patients, their own time constraints, as well as the logistics of maintaining a successful practice. They described strategies and techniques to educate patients, build trust, or substitute less costly alternatives when appropriate, often adapting their management to the individual patient and clinical environment. CONCLUSIONS: Physicians often make nuanced trade-offs in clinical practice aimed at efficient resource use within a complex flow of clinical work and patient expectations. Understanding the challenges faced by physicians and the strategies they use to exercise cost-consciousness provides insight into policy measures that will address physician's roles in health care resource use.

Specialty, political affiliation, and perceived social responsibility are associated with U.S. physician reactions to health care reform legislation.

BACKGROUND: Little is known about how U.S. physicians' political affiliations, specialties, or sense of social responsibility relate to their reactions to health care reform legislation. OBJECTIVE: To assess U.S. physicians' impressions about the direction of U.S. health care under the Affordable Care Act (ACA), whether that legislation will make reimbursement more or less fair, and examine how those judgments relate to political affiliation and perceived social responsibility. DESIGN: A cross-sectional, mailed, self-reported survey. PARTICIPANTS: Simple random sample of 3,897 U.S.physicians. MAIN MEASURES: Views on the ACA in general, reimbursement under the ACA in particular, and perceived social responsibility. KEY RESULTS: Among 2,556 physicians who responded (RR2: 65 %), approximately two out of five (41 %) believed that the ACA will turn U.S. health care in the right direction and make physician reimbursement less fair (44 %). Seventy-two percent of physicians endorsed a general professional obligation to address societal health policy issues, 65 % agreed that every physician is professionally obligated to care for the uninsured or underinsured, and half (55 %) were willing to accept limits on coverage for expensive drugs and procedures for the sake of expanding access to basic health care. In multivariable analyses, liberals and independents were both substantially more likely to endorse the ACA (OR 33.0 [95 % CI, 23.6­46.2]; OR 5.0 [95 % CI, 3.7­6.8], respectively), as were physicians reporting a salary (OR 1.7 [95 % CI, 1.2­2.5])or salary plus bonus (OR 1.4 [95 % CI, 1.1­1.9)compensation type. In the same multivariate models, those who agreed that addressing societal health policy issues are within the scope of their professional obligations (OR 1.5 [95 % CI, 1.0­2.0]), who believe physicians are professionally obligated to care for the uninsured / under-insured (OR 1.7 [95 % CI,1.3­2.4]), and who agreed with limiting coverage for expensive drugs and procedures to expand insurance coverage (OR 2.3 [95 % CI, 1.8­3.0]), were all significantly more likely to endorse the ACA. Surgeons and procedural specialists were less likely to endorse it (OR 0.5 [95 % CI, 0.4­0.7], OR 0.6 [95 %CI, 0.5­0.9], respectively). CONCLUSIONS: Significant subsets of U.S. physicians express concerns about the direction of U.S. health care under recent health care reform legislation. Those opinions appear intertwined with political affiliation,type of medical specialty, as well as perceived social responsibility.

Specialty, Political Affiliation, and Perceived Social Responsibility Are Associated with U.S. Physician Reactions to Health Care Reform Legislation.

BACKGROUND: Little is known about how U.S. physicians' political affiliations, specialties, or sense of social responsibility relate to their reactions to health care reform legislation. OBJECTIVE: To assess U.S. physicians' impressions about the direction of U.S. health care under the Affordable Care Act (ACA), whether that legislation will make reimbursement more or less fair, and examine how those judgments relate to political affiliation and perceived social responsibility. DESIGN: A cross-sectional, mailed, self-reported survey. PARTICIPANTS: Simple random sample of 3,897 U.S. physicians. MAIN MEASURES: Views on the ACA in general, reimbursement under the ACA in particular, and perceived social responsibility. KEY RESULTS: Among 2,556 physicians who responded (RR2: 65 %), approximately two out of five (41 %) believed that the ACA will turn U.S. health care in the right direction and make physician reimbursement less fair (44 %). Seventy-two percent of physicians endorsed a general professional obligation to address societal health policy issues, 65 % agreed that every physician is professionally obligated to care for the uninsured or underinsured, and half (55 %) were willing to accept limits on coverage for expensive drugs and procedures for the sake of expanding access to basic health care. In multivariable analyses, liberals and independents were both substantially more likely to endorse the ACA (OR 33.0 [95 % CI, 23.6-46.2]; OR 5.0 [95 % CI, 3.7-6.8], respectively), as were physicians reporting a salary (OR 1.7 [95 % CI, 1.2-2.5]) or salary plus bonus (OR 1.4 [95 % CI, 1.1-1.9) compensation type. In the same multivariate models, those who agreed that addressing societal health policy issues are within the scope of their professional obligations (OR 1.5 [95 % CI, 1.0-2.0]), who believe physicians are professionally obligated to care for the uninsured / under-insured (OR 1.7 [95 % CI, 1.3-2.4]), and who agreed with limiting coverage for expensive drugs and procedures to expand insurance coverage (OR 2.3 [95 % CI, 1.8-3.0]), were all significantly more likely to endorse the ACA. Surgeons and procedural specialists were less likely to endorse it (OR 0.5 [95 % CI, 0.4-0.7], OR 0.6 [95 % CI, 0.5-0.9], respectively). CONCLUSIONS: Significant subsets of U.S. physicians express concerns about the direction of U.S. health care under recent health care reform legislation. Those opinions appear intertwined with political affiliation, type of medical specialty, as well as perceived social responsibility.

Views of US physicians about controlling health care costs.

IMPORTANCE: Physicians' views about health care costs are germane to pending policy reforms. OBJECTIVE: To assess physicians' attitudes toward and perceived role in addressing health care costs. DESIGN, SETTING, AND PARTICIPANTS: A cross-sectional survey mailed in 2012 to 3897 US physicians randomly selected from the AMA Masterfile. MAIN OUTCOMES AND MEASURES: Enthusiasm for 17 cost-containment strategies and agreement with an 11-measure cost-consciousness scale. RESULTS: A total of 2556 physicians responded (response rate = 65%). Most believed that trial lawyers (60%), health insurance companies (59%), hospitals and health systems (56%), pharmaceutical and device manufacturers (56%), and patients (52%) have a "major responsibility" for reducing health care costs, whereas only 36% reported that practicing physicians have "major responsibility." Most were "very enthusiastic" for "promoting continuity of care" (75%), "expanding access to quality and safety data" (51%), and "limiting access to expensive treatments with little net benefit" (51%) as a means of reducing health care costs. Few expressed enthusiasm for "eliminating fee-for-service payment models" (7%). Most physicians reported being "aware of the costs of the tests/treatments [they] recommend" (76%), agreed they should adhere to clinical guidelines that discourage the use of marginally beneficial care (79%), and agreed that they "should be solely devoted to individual patients' best interests, even if that is expensive" (78%) and that "doctors need to take a more prominent role in limiting use of unnecessary tests" (89%). Most (85%) disagreed that they "should sometimes deny beneficial but costly services to certain patients because resources should go to other patients that need them more." In multivariable logistic regression models testing associations with enthusiasm for key cost-containment strategies, having a salary plus bonus or salary-only compensation type was independently associated with enthusiasm for "eliminating fee for service" (salary plus bonus: odds ratio [OR], 3.3, 99% CI, 1.8-6.1; salary only: OR, 4.3, 99% CI, 2.2-8.5). In multivariable linear regression models, group or government practice setting (ß = 0.87, 95% CI, 0.29 to 1.45, P = .004; and ß = 0.99, 95% CI, 0.20 to 1.79, P = .01, respectively) and having a salary plus bonus compensation type (ß = 0.82; 95% CI, 0.32 to 1.33; P = .002) were positively associated with cost-consciousness. Finding the "uncertainty involved in patient care disconcerting" was negatively associated with cost-consciousness (ß = -1.95; 95% CI, -2.71 to -1.18; P < .001). CONCLUSION AND RELEVANCE: In this survey about health care cost containment, US physicians reported having some responsibility to address health care costs in their practice and expressed general agreement about several quality initiatives to reduce cost but reported less enthusiasm for cost containment involving changes in payment models.

Stakeholder perceptions of using "opt-out" for tobacco use treatment in a cancer care setting: a qualitative evaluation of patients, providers, and desk staff.

BACKGROUND: Continued tobacco use in cancer patients increases the risk of cancer treatment failure and decreases survival. However, currently, most cancer patients do not receive evidence-based tobacco treatment. A recently proposed "opt-out" approach would automatically refer all cancer patients who use tobacco to tobacco treatment, but its acceptability to cancer patients and providers is unknown. We aimed to understand stakeholder beliefs, concerns, and receptivity to using the "opt-out" approach for tobacco treatment referrals in a cancer care setting. METHODS: Semi-structured interviews were conducted with oncology patients, providers, and desk staff. The sample size was determined when theoretical saturation was reached. Given the differences among participant roles, separate interview guides were developed. Transcripts were analyzed using standard coding techniques for qualitative data using the Consolidated Framework for Implementation Research (CFIR) codebook. Emergent codes were added to the codebook to account for themes not represented by a CFIR domain. Coded transcripts were then entered into the qualitative analysis software NVivo to generate code reports for CFIR domains and emergent codes for each stakeholder group. Data were presented by stakeholder group and subcategorized by CFIR domains and emergent codes when appropriate. RESULTS: A total of 21 providers, 19 patients, and 6 desk staff were interviewed. Overall acceptance of the "opt out" approach was high among all groups. Providers overwhelmingly approved of the approach as it requires little effort from them to operate and saves clinical time. Desk staff supported the opt-out system and believed there are clinical benefits to patients receiving information about tobacco treatment. Many patients expressed support for using an opt-out approach as many smokers need assistance but may not directly ask for it. Patients also thought that providers emphasizing the benefits of stopping tobacco use to cancer treatment and survival would be an important factor motivating them to attend treatment. CONCLUSIONS: While providers appreciated that the system required little effort on their part, patients clearly indicated that promotion of tobacco cessation treatment by their provider would be vital to enhance willingness to engage with treatment. Future implementation efforts of opt-out systems will require implementation strategies that promote provider engagement with their patients around smoking cessation while continuing to limit burden on providers.

Care management for Type 2 diabetes in the United States: a systematic review and meta-analysis.

BACKGROUND: This systematic review and meta-analysis aims at assessing the composition and performance of care management models evaluated in the last decade and their impact on patient important outcomes. METHODS: A comprehensive literature search of electronic bibliographic databases was performed to identify care management trials in type 2 diabetes. Random effects meta-analysis was used when feasible to pool outcome measures. RESULTS: Fifty-two studies were eligible. Most commonly reported were surrogate outcomes (such as HbA1c and LDL), followed by process measures (clinic visit or testing frequency). Less frequently reported were quality of life, patient satisfaction, self-care, and healthcare utilization. Most care management modalities were carved out from primary care. Meta-analysis demonstrated a statistically significant but trivial reduction of HbA1c (weighted difference in means -0.21%, 95% confidence interval -0.40 to -0.03, p < .03) and LDL-cholesterol (weighted difference in means -3.38 mg/dL, 95% confidence interval -6.27 to -0.49, p < .02). CONCLUSIONS: Most care management programs for patients with type 2 diabetes are 'carved-out', accomplish limited effects on metabolic outcomes, and have unknown effects on patient important outcomes. Comparative effectiveness research of different models of care management is needed to inform the design of medical homes for patients with chronic conditions.

Who is counseled to lose weight? Survey results and anthropometric data from 3,149 lower socioeconomic women.

Because obesity is a grave public health concern, this study examined the percentage of disadvantaged women who recalled ever having received weight loss advice from a healthcare provider and factors associated with such advice. This study was part of a 5-clinic, cervical cancer prevention trial. Patients not immediately post-partum completed a Spanish/English survey; height and weight were also obtained. Of the 3,149 respondents (response rate 83%), 2,138 (68%) were overweight or obese (body mass index (BMI) ≥ 25); 94% reported a household income of <$35,000/year; 69% were Hispanic; 10% non-Hispanic black; and 40% completed the survey in Spanish. Only one-third reported ever having been told to lose weight. Based on BMI, these rates were 15% in the 25-29.9 range (overweight); 34% within 30-34.9; 57% within 35-39.9; and 73% ≥ 40. In univariate analyses, among overweight women, diabetes or English-speaking was associated with weight loss advice. In multivariate analyses, being older, more educated, and diabetic were associated with such advice. 48% of non-Hispanic whites, 31% of non-Hispanic blacks, and 29% of Hispanic had a home scale. Among disadvantaged women, obesity alone does not determine who recalls weight loss advice. Language barriers and lack of a home scale merit further study to address obesity.

Key Stakeholder Perspectives of Community Engagement Efforts and the Impact of the Covid-19 Pandemic.

INTRODUCTION: The COVID-19 pandemic has disproportionally affected historically marginalized populations and their access to resources and healthcare. In times of crisis, authentic community engagement is more important than ever. This study was Phase 1 of a larger 3-phase study to conduct timely community-engaged research with community members to understand the disproportionate impact of COVID-19 on historically underserved communities. The objective of this work was to conduct key informant (KI) interviews (1) to understand community organizations perspectives about the role that large academic health centers play as they interface with community organizations to support their work, (2) to leverage KI's expertise to identify needs and assets within the community, and (3) to inform both Phase 2 (focus group qualitative research) and Phase 3 (survey) of the broader study. METHODS: A total of 24 key informants were identified through purposeful sampling and one-on-one semi-structured interviews were conducted across 4 states using video conferencing. RESULTS: Barriers to access and lack of transparency were highlighted as major issues requiring reform-in particular, aggressive billing practices and insurance barriers exacerbated local distrust of medical institutions. KIs recognized the health institution's support for testing and vaccination during the COVID-19 pandemic, but noted other significant gaps in care, especially regarding mental health support. Although communication with the health institution was consistent for some KIs, others experienced unsustained communication efforts that hindered cooperation and relationship building. CONCLUSIONS: Leaders in the community as key stakeholders can provide unique insights into the challenges and potential solutions required to promote health equity, and foster understanding between local communities and healthcare institutions.

Application of a myoelectric elbow flexion assist orthosis in adult traumatic brachial plexus injury: patient perspectives.

BACKGROUND: Individuals with brachial plexus injuries (BPIs) can be prescribed assistive devices, including myoelectric elbow orthoses (MEOs), for rehabilitation or functional use after failed treatment for elbow flexion restoration. Although recent case studies indicate potential for clinical improvements after using an MEO after BPI, the patients' perspectives on such use are still unknown. OBJECTIVE: To explore patient perspectives on the use of an MEO after surgical treatment for a traumatic BPI. STUDY DESIGN: Qualitative using both a focus group and semistructured interviews. METHODS: Patients with BPI that used an MEO were recruited. Five patients participated in an in-person focus group, whereas three patients participated in individual phone interviews. Themes that emerged from the focus group were compared against those that emerged from the personal interviews. RESULTS: Feedback was grouped into three themes: device usage, hardware performance, and device design. Within each theme, positive elements, areas for improvement, and additional considerations emerged. Patients indicated a positive attitude toward using an MEO as a rehabilitation tool. They desired a streamlined, stronger device to support them and assist during activities of daily living. CONCLUSIONS: For patients with BPI, a well-designed MEO that meets their needs could assist with rehabilitation and increase independence in daily activities. Continued patient engagement in the evaluation and development of both medical devices and treatment plans offers the best opportunity for improved outcomes that are important to the patient.

Cost modeling of preoperative axillary ultrasound and fine-needle aspiration to guide surgery for invasive breast cancer.

PURPOSE: Preoperative axillary lymph node ultrasound (US) and fine-needle aspiration (FNA) biopsy can identify a proportion of node-positive patients and avoid sentinel lymph node (SLN) surgery and direct surgical treatment. We compared the costs with preoperative US/FNA to without US/FNA (standard of care) for invasive breast cancer. METHODS: Using decision-analytic software we constructed a model to assess the costs associated with the two preoperative strategies. Diagnostic test sensitivities and specificities were obtained from literature review. Costs were derived from Medicare payment rates and actual resource utilization. Base-case results were fully probabilistic to capture parameter uncertainty in economic results. RESULTS: Base-case results estimate total mean costs per patient of $10,947 ("$" indicates US dollars throughout) with the US/FNA strategy and $10,983 with standard of care, an incremental cost savings of $36, on average, per patient [95% confidence interval (CI) of cost difference: -$248 to $179]. Most (63%) of the simulations resulted in cost saving with axillary US/FNA. One-way sensitivity analyses suggest that results are sensitive to assumed diagnostic and surgical costs and selected diagnostic test parameters. US/FNA approach was similar in costs or cost saving relative to the standard of care for all tumor stages. CONCLUSIONS: The additional cost of performing axillary US with possible FNA in every patient is balanced, on average, by the savings from avoiding SLN in cases where metastasis can be documented preoperatively. Routine use of preoperative axillary US with FNA to guide surgical planning can decrease the overall cost of patient care for invasive breast cancer.

Hearing and Heeding the Voices of those With Advanced Illnesses.

OBJECTIVES: To describe the feasibility of a chaplain-led spiritually focused life review interview and the development of a spiritual legacy document (SLD) for patients with advanced diseases and to describe changes in spiritual well-being (SWB), spiritual coping strategies (SC), and quality of life (QOL) after receiving the SLD. PATIENTS AND METHODS: In all, 130 patients and support person (SP) pairs were recruited from July 2012 to January 2019. Following enrollment, demographic information was gathered and baseline questionnaires were administered. Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp-12) and a linear analog scale assessment (LASA) measured SWB. LASAs also measured QOL and emotional well-being (EWB). Positive Religious Coping Scale (RCOPE) measured SC. After completion of baseline forms, participants were interviewed (individually) by a chaplain. Interviews were digitally recorded, transcribed, and verified. Transcripts were edited and participants were given the opportunity to make adaptations. The participant-approved draft was then developed into a professionally printed SLD. Follow-up questionnaires were administered to assess change. RESULTS: Significant improvements from baseline to post-SLD follow-up were found for patients on the LASAs: SWB (average 7.7-8.3, P = .01), QOL (average 6.7-7.3, P = .03), EWB (average 6.9-7.5, P = .01), and on the positive RCOPE (average 1.8-2.0, P = .007). Effect sizes were approximately 0.25. Considering any improvement, 61.0% improved their positive RCOPE score, 46.6% improved EWB, and 39.7% improved SWB. No significant changes were found on the FACIT-Sp-12. No significant changes were found for SPs. CONCLUSION: The results suggest that the primary participants who completed the study benefited by significantly increasing their QOL, SWB, EWB, and SC.

Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.

BACKGROUND: Genomic analysis may reveal both primary and secondary findings with direct relevance to the health of probands' biological relatives. Researchers question their obligations to return findings not only to participants but also to family members. Given the social value of privacy protection, should researchers offer a proband's results to family members, including after the proband's death? METHODS: Preferences were elicited using interviews and a survey. Respondents included probands from two pancreatic cancer research resources, plus biological and nonbiological family members. Hypothetical scenarios based on actual research findings from the two cancer research resources were presented; participants were asked return of results preferences and justifications. Interview transcripts were coded and analyzed; survey data were analyzed descriptively. RESULTS: Fifty-one individuals (17 probands, 21 biological relatives, 13 spouses/partners) were interviewed. Subsequently, a mailed survey was returned by 464 probands, 1,040 biological family members, and 399 spouses/partners. This analysis highlights the interviews, augmented by survey findings. Probands and family members attribute great predictive power and lifesaving potential to genomic information. A majority hold that a proband's genomic results relevant to family members' health ought to be offered. While informants endorse each individual's choice whether to learn results, most express a strong moral responsibility to know and to share, particularly with the younger generation. Most have few concerns about sharing genetic information within the family; rather, their concerns focus on the health consequences of not sharing. CONCLUSIONS: Although additional studies in diverse populations are needed, policies governing return of genomic results should consider how families understand genomic data, how they value confidentiality within the family, and whether they endorse an ethics of sharing. A focus on respect for individual privacy-without attention to how the broad social and cultural context shapes preferences within families-cannot be the sole foundation of policy.

Patient experience after kidney transplant: a conceptual framework of treatment burden.

BACKGROUND: Kidney transplant recipients face a lifelong regimen of medications, health monitoring and medical appointments. This work involved in managing one's health and its impact on well-being are referred to as treatment burden. Excessive treatment burden can adversely impact adherence and quality of life. The aim of this study was to develop a conceptual framework of treatment burden after kidney transplantation. Qualitative interviews were conducted with kidney transplant recipients (n = 27) from three Mayo Clinic transplant centers. A semi-structured interview guide originally developed in patients with chronic conditions and tailored to the context of kidney transplantation was utilized. Themes of treatment burden after kidney transplantation were confirmed in two focus groups (n = 16). RESULTS: Analyses confirmed three main themes of treatment burden after kidney transplantation: 1) work patients must do to care for their health (e.g., attending medical appointments, taking medications), 2) challenges/stressors that exacerbate felt burden (e.g., financial concerns, health system obstacles) 3) impacts of burden (e.g., role/social activity limitations). CONCLUSIONS: Patients describe a significant amount of work involved in caring for their kidney transplants. This work is exacerbated by individual, interpersonal and system-related factors. The framework will be used as a foundation for a patient-reported measure of treatment burden to promote better care after kidney transplantation.

The Supervisor's Perceived Role in Employee Well-Being: Results From Mayo Clinic.

PURPOSE: Novel approaches are needed to enhance employee well-being and perhaps supervisors can be an effective agent for worksite health promotion. The aim of this study was to examine the supervisor's perceived needs, barriers, and role for influencing employee well-being for incorporation into program development. DESIGN: Semistructured, qualitative interviews of supervisors. SETTING: Large, integrated academic health-care organization with over 30 000 employees and 2600 supervisors having access to comprehensive well-being programs and a successful well-being champion network comprised of 600 champions. PARTICIPANTS: Twenty supervisors representing clinical, research, and administrative units. METHODS: Semistructured, one-on-one interviews were conducted and audio recorded. Analysis included content log development and open coding by a trained analyst to reveal key themes. More formalized content coding using specialized software for qualitative analyses was also conducted. RESULTS: Supervisor responses were wide ranging regarding their perceived and desired role in promoting workplace well-being. Barriers from the supervisor perspective included high current workload, ambivalence about promoting wellness, lack of support from leadership, lack of flexibility and control at work, and difficulty accessing on-site resources. They perceived their potential role in well-being as remaining a positive role model and encouraging their staff in wellness activities. CONCLUSION: Although findings are generated from a small sample size, these qualitative data provide compelling and early insights into building a workplace well-being strategy leveraging an underutilized key stakeholder, the workplace supervisor.

Well-Being Champion Impact on Employee Engagement, Staff Satisfaction, and Employee Well-Being.

OBJECTIVE: To evaluate the potential impact of a workplace well-being champion on employee and organizational measures of well-being. PATIENTS AND METHODS: Baseline well-being measures were collected in October 2-20, 2017 and analyzed from January 1, 2018 through June 30, 2018 by incorporating a focused question set (addressing meaning in work, work-life integration, and physical, social, financial, emotional, and general well-being) into the biennial Mayo Clinic All-Staff Survey. RESULTS: The survey was distributed to 64,059 employees, with a response rate of 73%. Employees with a work unit well-being champion had more favorable responses overall than did employees reporting no well-being champion. The percentage responding "favorably" to each well-being measure differed from 2 to 12 percentage points and were all highly statistically significant (P<.001). Measures with the greatest difference included questions associated with the well-being domains of physical (85% vs 73%), social (84% vs 72%), and financial (72% vs 63%), as well as general well-being (69% vs 60%). Those reporting having a well-being champion had more favorable responses to several questions regarding the immediate supervisor and the work environment being conducive to carry out organizational values, trust within the work unit, ability to speak freely, efforts to make everyone feel a part of the team, and accountability within the work unit. CONCLUSION: Having a work unit well-being champion, coupled with an organizational commitment to employee well-being, is associated with better employee engagement, satisfaction, and perception of personal well-being, as well as a more favorable perception of the organization, strongly supporting the multilevel benefits of a robust well-being champion program.

Faculty Support for Self-Directed Learning in Internal Medicine Residency: A Qualitative Study Using Grounded Theory.

PURPOSE: Self-directed learning (SDL) is part of residency training, which residents desire guidance in implementing. To characterize SDL within the clinical context, this study explored residents' perceptions of faculty members' role in promoting and supporting resident SDL. METHOD: Using a constructivist grounded theory approach, the authors conducted seven focus groups with 46 internal medicine residents at the Mayo Clinic Internal Medicine Residency Program from October 2014 to January 2015. Focus group transcripts were deidentified and processed through open coding and analytic memo writing. Guided by a previously developed SDL model, data were analyzed regarding faculty member involvement in resident SDL. Themes were organized and patterns were discussed at team meetings, with constant comparison with new data. Trustworthiness was established using two member-check sessions. RESULTS: The authors identified themes within the categories of faculty guidance for SDL, SDL versus other-directed learning (ODL), and faculty archetypes for supporting SDL. Clinical teachers play a key role in facilitating resident SDL and can provide guidance at each step in the SDL process. Residents discussed the distinction between SDL and ODL, highlighting the integrated nature of learning and interplay between the two approaches to learning. Residents identified themes relating to three archetypal approaches faculty implement to support resident SDL in the clinical environment (directed, collaborative, and role model SDL), with benefits and challenges of each approach. CONCLUSIONS: This study underscores the importance of external guidance for resident SDL and expands on approaches faculty members can use to support SDL in the clinical context.