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Rongchong Huang,1,* Xiantao Song,2,* Jian Wu,1 Wei Huang,2 Aaron L Leppin,3 Michael R Gionfriddo,3,4 Yongxian Liu,1 Kasey R Boehmer,3 Henry H Ting,5 Victor M Montori3,6 1Department of Cardiology, The First Affiliated Hospital of Dalian Medical University, Dalian, 2Department of Cardiology, Beijing An Zhen Hospital, Capital Medical University, Beijing, People’s Republic of China; 3Knowledge and Evaluation Research Unit, 4Mayo Graduate School, Mayo Clinic, Rochester, MN, 5Value Institute, New York-Presbyterian Hospital, The University Hospital of Columbia and Cornell, New York, NY, 6Division of Endocrinology, Mayo Clinic, Rochester, MN, USA *These authors contributed equally to this work Background: The aim of this study was to evaluate the feasibility of using the Statin Choice decision aid to have discussions about starting a statin medication for cardiovascular risk reduction in Chinese patients with stable coronary artery diseases.Methods: A prospective, pilot study of the Statin Choice decision aid in two teaching hospitals in Northern China was conducted. A total of seven clinicians were enrolled and underwent a 12-hour, group-based, in-person training on shared decision making (SDM) and the Statin Choice decision aid. Then, these clinicians used the Statin Choice decision aid in patients during a clinical encounter. A total of 86 patients aged 40-80 years, who had stable angina, were enrolled. All clinical encounters were video recorded. A team of three researchers viewed and scored all the encounter recordings to evaluate the SDM process and fidelity to the intervention using the OPTION scale and Fidelity scale, respectively. All the patients were followed up for 12 months to record adherence to statin and any major adverse cardiac events (MACEs).Results: The average scores on the OPTION normalized score and Fidelity scale were 21 (range, 3–32; out of a possible, 48) and 10 (range, 6–10; out of a possible, 10), respectively. This suggested that Chinese clinicians who were using Statin Choice in their patients were able to exhibit behaviors consistent with SDM at a level that is similar to that reported in Western countries. After SDM, the statin adherence was 94.5% (69/73), and the proportion of MACEs was 2.9% (2/69).Conclusion: Using an encounter decision aid developed in the US, it was feasible to implement SDM in a referral cardiology practice in Mainland China. Further work to ensure that the encounter aid is pertinent to the Chinese population and that SDM is tested in at-risk patients could contribute to the implementation of SDM across Mainland China. Keywords: Statin Choice, decision aid, stable angina, statin adherence, shared decision making, China

Objectives: To explore the cost conversations taking place when patients with atrial fibrillation and their clinicians decide on whether and how to use anticoagulation to prevent strokes., Methods: Secondary qualitative thematic analysis of conversations from 476 clinical encounters in three sites of a multicenter randomized trial comparing usual care with and without a shared decision-making tool., Results: We identified three themes with subthemes: (1) What was discussed: conversation content (2) How content was transmitted: communication patterns and (3) Implicit conversation drivers. Due to each patient's unique circumstances, bi-directional conversations focused on relationship- and solution-based content enabled better cost burden discovery. Conversation drivers included affordability, comorbidities, preferences, and uncertainty about future costs., Conclusions: Cost conversations were often initiated by clinicians, and if they did not invite a response, patients passively received information without understanding or weighing cost burden. When clinicians discussed cost information using relational or solution-focused content and bi-directional communication patients were more likely to engage in discussion including their unique situation., Practice Implications: Solution-focused cost conversations can reduce financial treatment burden, but require estimates of out-of-pocket costs, insurance coverage, and long-term financial effects of various options. Conversation tools and information on financial resources are valuable to patients and clinicians., Competing Interests: Declaration of Competing Interest No authors have any competing interests to declare., (Copyright © 2024. Published by Elsevier B.V.)

For some patients who have lost the lower part of an arm, hand transplant offers the possibility of receiving a new limb with varying degrees of sensation and function. This procedure, Vascularized Composite Allotransplantation (VCA), is demanding for patients and their care community and comes with significant risks. As a high-stakes decision, patients interested in VCA are subject to extensive clinical evaluation and eligibility decision making. Patients and their care community must also decide if hand transplant (versus other approaches including rehabilitative therapies with or without prosthesis) is right for them. This decision making is often confusing and practically and emotionally fraught. It is complicated in four ways: by the numerous beneficial and harmful potential effects of hand transplant or other options, the number of people affected by VCA and the diverse or conflicting positions that they may hold, the practical demands and limitations of the patient's life situation, and the existential significance of limb loss and transplant for the patient's being. Patients need support in working through these treatment determining issues. Evaluation does not provide this support. Shared decision making (SDM) is a method of care that helps patients think, talk, and feel their way through to the right course of action for them. However, traditional models of SDM that focus on weighing possible beneficial and harmful effects of treatments are ill-equipped to tackle the heterogeneous issues of VCA. A recent model, Purposeful SDM extends the range of troubling issues that SDM can help support beyond opposing effects, to include conflicting positions, life situations, and existential being. In this paper we explore the pertinence of these issues in VCA, methods of SDM that each require of clinicians, the benefits of supporting patients with the breadth of issues in their unique problematic situations, implications for outcomes and practice, and extend the theory of the Purposeful SDM model itself based on the issues present in hand transplant decision making., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest. The author(s) declared that they were an editorial board member of Frontiers, at the time of submission. This had no impact on the peer review process and the final decision., (© 2024 Hargraves, Boehmer, Amer, Kennedy, Griffin, Finnie, Montori, Smither, Mardini, Moran and Jowsey-Gregoire.)

Introduction: Financial toxicity associated with treatments for metastatic prostate cancer remains poorly defined. We sought to understand aspects of financial toxicity not captured in a commonly employed financial toxicity questionnaire and identify potential interventions to help alleviate financial toxicity through a convergent mixed methods approach., Methods: Patients seen at our institution's advanced prostate cancer clinic were approached for completion of the Comprehensive Score for Financial Toxicity (COST-FACIT) questionnaire (quantitative analysis). A maximal variation purposive sample was chosen to participate in focus group discussions (qualitative analysis). Conventional content analysis was performed using an inductive approach. COST-FACIT scores were compared between patients experiencing high and low financial toxicity using Wilcoxon rank sum test., Results: Three themes were identified through qualitative analysis: (1) workload, (2) coping strategies, and (3) communication. We found alignment with the existing theory of financial capacity across our findings. Two unique aspects of financial toxicity emerged that were not assessed quantitatively and deemed to be significant. Specifically, cost transparency (including health care teams knowledgeable about and willing to discuss costs) and inclusion of informal caregivers in financial toxicity screening and decision-making may guide future interventions aimed at limiting financial toxicity in this population., Conclusions: Prolonged treatment courses involving multiple lines of treatment with varying costs result in distinct financial toxicity components for patients with metastatic prostate cancer that are not assessed with COST-FACIT. Improving cost transparency, health care team knowledge and engagement, and providing resources to support informal caregivers may have a significant impact on the financial toxicity experienced by these patients.

This article reports on a study to assess the feasibility of research procedures and acceptability of QBSAFE, a set of conversation cards focused on quality of life, treatment burden, safety, and avoidance of future events in people with type 2 diabetes. The study enrolled 84 patients and 7 clinicians. Of the 58 patients who completed questionnaires, 64% agreed that the QBSAFE agenda-setting kit (ASK) helped them discuss their situation, 78% agreed that others could benefit from it, and 38% said they would use it again. Most clinicians felt confident responding to issues (in 89% of encounters) and said they would use the kit again (78%) and recommend it to colleagues (82%). The QBSAFE ASK can be feasibly implemented and holds promise in facilitating discussion and collaborative problem-solving., Competing Interests: No potential conflicts of interest relevant to this article were reported., (©2024 by the American Diabetes Association.)

Rationale & Objective: Dialysis comes with a substantial treatment burden, so patients must select care plans that align with their preferences. We aimed to deepen the understanding of decisional regret with dialysis choices., Study Design: This study had a mixed-methods explanatory sequential design., Setting & Participants: All patients from a single academic medical center prescribed maintenance in-center hemodialysis or presenting for home hemodialysis or peritoneal dialysis check-up during 3 weeks were approached for survey. A total of 78 patients agreed to participate. Patients with the highest (15 patients) and lowest decisional regret (20 patients) were invited to semistructured interviews., Predictors: Decisional regret scale and illness intrusiveness scale were used in this study., Analytical Approach: Quantitatively, we examined correlations between the decision regret scale and illness intrusiveness scale and sorted patients into the highest and lowest decision regret scale quartiles for further interviews; then, we compared patient characteristics between those that consented to interview in high and low decisional regret. Qualitatively, we used an adapted grounded theory approach to examine differences between interviewed patients with high and low decisional regret., Results: Of patients invited to participate in the interviews, 21 patients (8 high regret, 13 low regret) agreed. We observed that patients with high decisional regret displayed resignation toward dialysis, disruption of their sense of self and social roles, and self-blame, whereas patients with low decisional regret demonstrated positivity, integration of dialysis into their identity, and self-compassion., Limitations: Patients with the highest levels of decisional regret may have already withdrawn from dialysis. Patients could complete interviews in any location (eg, home, dialysis unit, and clinical office), which may have influenced patient disclosure., Conclusions: Although all patients experienced disruption after dialysis initiation, patients' approach to adversity differs between patients experiencing high versus low regret. This study identifies emotional responses to dialysis that may be modifiable through patient-support interventions., (© 2023 The Authors.)

Background: Health and Wellness Coaching (HWC) may be beneficial in chronic condition care. We sought to appraise its effectiveness on quality of life (QoL), self-efficacy (SE), depression, and anxiety., Methods: We searched MEDLINE, EMBASE, CINAHL, PsycINFO, and Cochrane CENTRAL for randomized trials published January 2005 - March 2023 that compared HWC to standard clinical care or another intervention without coaching. We examined QoL, SE, depression, or anxiety outcomes. Meta-analysis utilizing the random-effects model was used to estimate the pooled standardized mean difference (SMD)., Results: Thirty included studies demonstrated that HWC improved QoL within 3 months (SMD 0.62 95 % CI 0.22-1.02, p = 0.002), SE within 1.5 months (SMD 0.38, 95 % CI 0.03-0.73, p = 0.03), and depression at 3, 6, and 12 months (SMD 0.67, 95 % CI 0.13-1.20, p = 0.01), (SMD 0.72, 95 % CI 0.19-1.24, p = 0.006), and (SMD 0.41, 95 % CI 0.09-0.73, p = 0.01) Certainty in the evidence for most outcomes was either very low or low primarily due to the high risk of bias, heterogeneity, and imprecision., Conclusion: HWC improves QoL, SE, and depression across chronic illness populations. Future research needs to standardize intervention reporting and outcome collection., Practice Implications: Future HWC studies should standardize intervention components, reporting, and outcome measures, apply relevant chronic illness theories, and aim to follow participants for greater than one year., Competing Interests: Declaration of Competing Interest The authors have no competing interests to declare., (Copyright © 2023 Elsevier B.V. All rights reserved.)

Introduction: Advancements in vascularized composite allotransplantation have made hand transplants possible for persons living with upper limb loss. Hand transplantation is not a life-saving procedure, but rather a quality-of-life enhancing procedure; hence the risk of morbidity and mortality must be weighed against improvements in function and appearance. This study explored the decision-making process of patients evaluated for hand transplantation., Methods/approach: A qualitative case series study using retrospective chart data of evaluations was conducted between January 1, 2011 and February 28, 2020. Notes were extracted and read by three reviewers. Each case was summarized noting similarities and differences., Findings: Nine patients underwent evaluation. Eight were no longer under evaluation and did not receive transplant; one was still undergoing evaluation. Patient motivations for evaluation were dissatisfaction with prostheses or self-image, chronic pain, performing activities of daily living, occupation, burden placed on caregivers, and concerns about overuse of non-affected limbs. Patients chose not to pursue transplantation due to rehabilitation time, immunosuppression, alternative treatments, and social and financial challenges. The clinical team discontinued evaluations due to unmet evaluation requirements, medical contraindications, or treatment alternatives. Different modes of shared decision-making were present depending on the party most heavily featured in the charts as driving decisions., Discussion: This was an examination of shared decision-making with hand transplant candidates who did not proceed to transplant. Reasons for choosing alternative strategies for management were multifactorial. Lessons learned regarding patient motivations and shared decision-making can inform future interventions to better support patients.

Background: Beta-lactam therapeutic drug monitoring (BL TDM; drug level testing) can facilitate improved outcomes in critically ill patients. However, only 10%-20% of hospitals have implemented BL TDM. This study aimed to characterize provider perceptions and key considerations for successfully implementing BL TDM., Methods: This was a sequential mixed-methods study from 2020 to 2021 of diverse stakeholders at 3 academic medical centers with varying degrees of BL TDM implementation (not implemented, partially implemented, and fully implemented). Stakeholders were surveyed, and a proportion of participants completed semistructured interviews. Themes were identified, and findings were contextualized with implementation science frameworks., Results: Most of the 138 survey respondents perceived that BL TDM was relevant to their practice and improved medication effectiveness and safety. Integrated with interview data from 30 individuals, 2 implementation themes were identified: individual internalization and organizational features. Individuals needed to internalize, make sense of, and agree to BL TDM implementation, which was positively influenced by repeated exposure to evidence and expertise. The process of internalization appeared more complex with BL TDM than with other antibiotics (ie, vancomycin). Organizational considerations relevant to BL TDM implementation (eg, infrastructure, personnel) were similar to those identified in other TDM settings., Conclusions: Broad enthusiasm for BL TDM among participants was found. Prior literature suggested that assay availability was the primary barrier to implementation; however, the data revealed many more individual and organizational attributes, which impacted the BL TDM implementation. Internalization should particularly be focused on to improve the adoption of this evidence-based practice., Competing Interests: M. H. Scheetz reports a previous research contract with Allecra. E. F. Barreto reports an ongoing consultancy agreement with Wolters-Kluwer. For the remaining authors, no conflicts of interest were declared., (Copyright © 2023 Wolters Kluwer Health, Inc. All rights reserved.)

Despite the known benefits of supportive work environments for promoting patient quality and safety and healthcare worker retention, there is no clear mandate for improving work environments within Learning Health Systems (LHS) nor an LHS wellness competency. Striking rises in burnout levels among healthcare workers provide urgency for this topic., Methods: We brought three experts on moral injury, burnout prevention, and ethics to a recurring, interactive LHS training program "Design Shop" session, harnessing scholars' ideas prior to the meeting. Generally following SQUIRE 2.0 guidelines, we evaluated the prework and discussion via informal content analysis to develop a set of pathways for developing moral injury and burnout prevention programs. Along these lines, we developed a new competency for moral injury and burnout prevention within LHS training programs., Results: In preparation for the session, scholars differentiated moral injury from burnout, highlighted the profound impact of COVID-19 on moral injury, and proposed testable interventions to reduce injury. Scholar and expert input was then merged into developing the new competency in moral injury and burnout prevention. In particular, the competency focuses on preparing scholars to (1) demonstrate knowledge of moral injury and burnout, (2) measure burnout, moral injury, and their remediable predictors, (3) use methods for improving burnout, (4) structure training programs with supportive work environments, and (5) embed burnout and moral injury prevention into LHS structures., Conclusions: Burnout and moral injury prevention have been largely omitted in LHS training. A competency related to burnout and moral injury reduction can potentially bring sustainable work lives for scholars and their colleagues, better incorporation of their science into clinical practice, and better outcomes for patients., Competing Interests: Dr. Linzer is supported through his employer Hennepin Healthcare for burnout reduction studies and training by large health systems (Optum, Essentia, Gillette, California AHEC) and by national organizations (AMA and IHI). His work on this paper was supported by AHRQ. The other authors have no disclosures., (© 2023 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)

Objective: To create a model based on patients' characteristics that can predict the number of burdens reported using the ICAN Discussion Aid, to target use of this tool to patients likeliest to benefit., Patients and Methods: Six hundred thirty-five patients (aged ≥18 years) completed the ICAN Discussion Aid at a Scottsdale, Arizona, family medicine clinic. Patient characteristics were gathered from their health records. Regression trees with Poisson splitting criteria were used to model the data., Results: Our model suggests the patients with the most burdens had major depressive disorder, with twice as many overall burdens (personal plus health care burdens) than patients without depression. Patients with depression who were younger than 38 years had the highest number of personal burdens. A body mass index (BMI) of 26 or greater was associated with increased health care burden versus a BMI below 26., Conclusion: The number of burdens a patient will report on the ICAN Discussion Aid can be approximated based on certain patient characteristics. Adults with major depression, a BMI of 26 or greater, and younger age may have greater reported burdens on ICAN, but this finding needs to be validated in independent samples., Competing Interests: Conflict of interest: The authors report no conflicts of interest., (© Copyright by the American Board of Family Medicine.)

Objective: To explore how costs of care are discussed in real clinical encounters and what humanistic elements support them., Methods: A qualitative thematic analysis of 41 purposively selected transcripts of video-recorded clinical encounters from trials run between 2007 and 2015. Videos were obtained from a corpus of 220 randomly selected videos from 8 practice-based randomized trials and 1 pre-post prospective study comparing care with and without shared decision making (SDM) tools., Results: Our qualitative analysis identified two major themes: the first, Space Needed for Cost Conversations, describes patients' needs regarding their financial capacity. The second, Caring Responses, describes humanistic elements that patients and clinicians can bring to clinical encounters to include good quality cost conversations., Conclusion: Our findings suggest that strengthening patient-clinician human connections, focusing on imbalances between patient resources and burdens, and providing space to allow potentially unexpected cost discussions to emerge may best support high quality cost conversations and tailored care plans., Practice Implications: We recommend clinicians consider 4 aspects of communication, represented by the mnemonic ABLE: Ask questions, Be kind and acknowledge emotions, Listen for indirect signals and (discuss with) Every patient. Future research should evaluate the practicality of these recommendations, along with system-level improvements to support implementation of our recommendations., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2022. Published by Elsevier B.V.)

Background: Venous thromboembolism (VTE) in pregnancy is an important cause of maternal morbidity and mortality. Low-molecular-weight heparin (LMWH) is the cornerstone of prophylaxis and treatment of thrombotic events during pregnancy. LMWH has fewer adverse effects than other anticoagulants, does not cross the placenta, and is safe for the fetus. However, the use of LMWH during pregnancy is sensitive to womens' underlying preferences. The objective of this review is to systematically assess women's values and preferences research evidence on this topic., Methods: We searched four electronic databases from inception to March 2022, and included studies examining values and preferences of using LMWH among pregnant women at risk of VTE. We followed a convergent integrated mixed-methods design to compare and contrast quantitative outcomes (utility and non-utility measures) and qualitative findings. We assessed the certainty of the values and preferences evidence with the GRADE approach for quantitative findings, and with GRADE-CERqual for qualitative evidence. Results were presented in a conjoint display., Results: We screened 3,393 references and identified seven eligible studies. The mixed methods analysis resulted in four themes. Datasets confirmed each other in that: 1) the majority of women consider that benefits of treatment outweigh the inconveniences of daily injections; and 2) main concerns around medication are safety and injections administration. Quantitative outcomes expanded on the qualitative findings in that: 3) participants who perceived a higher risk of VTE were more willing to take LMWH. Finally, we found a discrepancy between the datasets around: 4) the amount of information preferred to make the decision; however, qualitative data expanded to clarify that women prefer making informed decisions and receive support from their clinician in their decision-making process., Conclusions: We are moderately confident that in the context of pregnancy, using LMWH is preferred by women given its net beneficial balance. Integrating data from different sources of evidence, and representing them in a jointly manner helps to identify patient's values and preferences. Our results may inform clinical practice guidelines and support shared decision-making process in the clinical encounter for the management of VTE in the context of pregnancy., (© 2022. The Author(s).)

Reconstructive allografts using Vascularized Composite Allotransplantation (VCA) are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA teams to form, prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment (e.g., local culture and team values; investment of resources) influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented (e.g., communication, leadership), strategic (e.g., planning, training) and interpersonal (e.g., conflict management, trust building). Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Griffin, Kennedy, Boehmer, Hargraves, Amer and Jowsey-Gregoire.)

Nonadherence to medical treatment is exceptionally common and associated with poor clinical outcomes, a negative impact on quality of life, and a large financial burden on health care systems. This article first addresses key contributors to nonadherence from patient-specific, treatment-specific, and health care system-specific factors. Second, it outlines tools for the practicing clinician to identify, evaluate, and manage nonadherence across the spectrum of chronic disease in partnership with patients., (Copyright © 2022 Elsevier Inc. All rights reserved.)

Purpose: Access to health care is a long-standing concern for rural patients; however, administrative measures fail to capture the subjective patient experience of accessing health care. The purpose of this review was to synthesize the qualitative literature on patient and caregiver experiences of accessing health care services for chronic disease management among US residents of rural areas., Methods: We searched Embase, MEDLINE, PsycInfo, CINAHL, and Scopus to identify qualitative studies published during 2010-2019. A thematic synthesis approach was used to analyze findings from included studies., Results: A total of 62 studies involving 1,354 unique participants were included. The largest share of studies (24.2%) was focused on the experience of patients with cancer, followed by behavioral health (16.1%), HIV and AIDS (14.5%), and diabetes (12.9%). We identified 4 primary analytic themes of barriers and facilitators associated with the experience of accessing health care services for chronic disease management in rural areas: (1) navigating the rural environment, (2) navigating the health care system, (3) financing chronic disease management, and (4) rural life (ie, common elements of a distinct "rural" way of thinking and behaving)., Conclusions: In this comprehensive review, we found that important cultural, structural, and individual factors influenced the rural patient's experience of health care access and use, including barriers and facilitators posed by geographic and built environments, and distinct rural mores. Our findings can inform policies and programs that both facilitate structural aspects of access and include culturally appropriate interventions. VISUAL ABSTRACT ., (© 2022 Annals of Family Medicine, Inc.)

Background: Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD)., Objective: To understand the prognostic information preferences expressed by older patients with CKD., Design and Participants: Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic., Approach: Semi-structured telephone or in-person interviews to explore patients' preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis., Key Results: We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation., Conclusion: Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives., (© 2021. Society of General Internal Medicine.)

Background: Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients' insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden., Methods: We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants' treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles were invited to participate in interviews and observations., Results: Quantitatively, participants in the high burden group were significantly younger (mean = 48.4 years vs. 68.6 years respectively, p = <0.001). No other quantitative differences were observed. Qualitatively, we found differences in patient self-management practices, such as the high burden group having difficulty establishing a new rhythm of life to cope with dialysis, greater disruption in social roles and self-perception, fewer appraisal focused coping strategies, more difficulty maintaining social networks, and more negatively portrayed experiences early in their dialysis journey., Conclusions and Relevance: Patients on dialysis reporting the greatest illness and treatment burden have difficulties that their low-burden counterparts do not report, which may be amenable to intervention., Competing Interests: The authors have declared that no competing interests exist.

Background: Diabetes care has been traditionally focused on targeting certain levels of glycemic control. This narrow emphasis may impose burdens on patients, including high treatment costs, illness-related work, or side effects from medications, while leaving other patient needs and goals under-addressed. The authors aim to shift the paradigm of care for people with diabetes, to focus on quality of life, burden of treatment, safety, and avoidance of future events: the QBSAfe domains., Methods: We describe a single-arm pilot study to assess the feasibility and acceptability of using the QBSAfe agenda setting kit (ASK) during routine clinical visits. The set of 14 conversation aid cards was co-developed with patients, family caregivers, and clinicians. The ASK will be used in the context of a clinic visit, which will be recorded by members of the study team to identify patterns of clinician-patient conversations. Feasibility will be measured by the number of participants recruited, time to goal accrual, and completeness of data collection; acceptability will be assessed using post-visit surveys of patients and clinicians. A subgroup of patients will be invited to participate in post-visit qualitative semi-structured interviews for additional feedback. This study will be conducted across three medical centers in the Midwest and East Coast of the USA., Discussion: Current healthcare infrastructure and associated demands and pressures on clinicians make changes in care difficult. However, this intervention has the potential to shift conversations during clinical encounters so they can address and directly respond to patient needs, symptoms, and capacity. As part of the QBSAfe ASK, the authors are also actively collaborating with a variety of stakeholders to create tools to help clinicians respond more effectively to patient concerns as they are raised during the clinical encounters. Additional insights about the use of the QBSAfe approach in the virtual space will be gathered during the process of our study due to restrictions imposed upon face to face visit during the COVID-19 pandemic., Trial Registration: ClinicalTrials.gov , NCT04514523 . Registered 17 August 2020-retrospectively registered., (© 2021. The Author(s).)

Objective: To understand the perspectives of persons' living with diabetes about the increasing cost of diabetes management through an analysis of online health communities (OHCs) and the impact of persons' participation in OHCs on their capacity and treatment burden., Patients and Methods: A qualitative study of 556 blog posts submitted between January 1, 2007 and December 31, 2017 to 4 diabetes social networking sites was conducted between March 2018 and July 2019. All posts were coded inductively using thematic analysis procedures. Eton's Burden of Treatment Framework and Boehmer's Theory of Patient Capacity directed triangulation of themes with existing theory., Results: Three themes were identified: (1) cost barriers to care: participants describe individual and systemic cost barriers that inhibit prescribed therapy goals; (2) impact of financial cost on health: participants describe the financial effects of care on their physical and emotional health; and (3) saving strategies to overcome cost impact: participants discuss practical strategies that help them achieve therapy goals. Finally, we also identify that the use of OHCs serves to increase persons' capacity with the potential to decrease treatment burden, ultimately improving mental and physical health., Conclusion: High cost for diabetes care generated barriers that negatively affected physical health and emotional states. Participant-shared experiences in OHCs increased participants' capacity to manage the burden. Potential solutions include cost-based shared decision-making tools and advocacy for policy change., (© 2021 THE AUTHORS.)

Purpose: Diabetes care has largely focused on reducing the risk of complications by achieving hemoglobin A1c (HbA1c) targets; yet, whole-person care may be more effective and desirable. We sought to determine the nature of discussions about quality of life, burden of treatment, hypoglycemia, sexual function, and social support during diabetes-focused clinical encounters., Methods: We analyzed 41 previously recorded clinical encounters with patients with type 2 diabetes from the control arms of practice-based trials of shared decision-making. Two coders evaluated videos for discussions about aspects of life with diabetes: quality of life, burden of treatment, hypoglycemia, sexual function, and social supports. When an aspect was raised, coders evaluated the nature of the conversation, clinician responses, and time spent on discussing the aspect., Results: Median length of the encounter was 15 min, 6 s (IQR: 11:16-20:23 min). Overall, 35 of 41 encounters (85.4%) included some discussion of quality of life (58.5%), burden of treatment (51.2%), social support (2.4%), or hypoglycemia (9.8%). Sexual function was not discussed. On average, 4.5% (1.4-5.5%) of the encounter time involved conversations about HbA1c, whereas 15.0% (0-25%) of the encounter time was spent on some aspect of quality of life, burden of treatment, social support, or hypoglycemia. If a topic related to quality of life was raised, clinicians most often responded by acknowledging patient's concern without providing a solution (45.8%)., Conclusions: A significant part of the patient-clinician encounter involves discussion of quality of life and burden of treatment, but clinicians rarely address these issues by providing solutions., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Known gaps exist between what patients value and institutions prioritize. We sought to incorporate patients' reasons for valuing family medicine into a new Mission and Vision statement by deploying brief surveys to a convenience sample of patients. We conducted descriptive quantitative analyses of demographics and inductive content analysis of written responses. Patients returned 92 (20%) of 450 questionnaires. Responders were 63% female, mean age of 47 years. Patients noted distinguishing features of family medicine were (1) continuity of care, (2) all-encompassing care, and (3) trusted referrals. Some patients reported not knowing there was a distinction between family medicine and other primary care., Competing Interests: Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2021.)

Objectives: To understand healthcare team perceptions of the role of professional interpreters and interpretation modalities during end of life and critical illness discussions with patients and families who have limited English proficiency in the intensive care unit (ICU)., Methods: We did a secondary analysis of data from a qualitative study with semi-structured interviews of 16 physicians, 12 nurses, and 12 professional interpreters from 3 ICUs at Mayo Clinic, Rochester., Results: We identified 3 main role descriptions for professional interpreters: 1) Verbatim interpretation; interpreters use literal interpretation; 2) Health Literacy Guardian; interpreters integrate advocacy into their role; 3) Cultural Brokers; interpreters transmit information incorporating cultural nuances. Clinicians expressed advantages and disadvantages of different interpretation modalities on the professional interpreter's role in the ICU., Conclusion: Our study illuminates different professional interpreters' roles. Furthermore, we describe the perceived relationship between interpretation modalities and the interpreter's roles and influence on communication dynamics in the ICU for patients with LEP., Practice Implications: Patients benefit from having an interpreter, who can function as a cultural broker or literacy guardian during communication in the ICU setting where care is especially complex, good communication is vital, and decision making is challenging., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Introduction: Research career development awards (CDAs) facilitate development of clinician-scientists. This study compared the academic achievements of individuals in a structured institutional "pre-K" CDA program, the Mayo Clinic Kern Scholars program, with individuals who applied for but were not admitted to the Kern program ("Kern applicants"), and awardees of other unstructured internal CDAs., Methods: This was a longitudinal cohort study of clinicians engaged in research at Mayo Clinic between 2010 and 2019. The primary outcome was time to the 15 th new peer-reviewed publication after the program start, adjusted for baseline number of publications. Secondarily, we described successful awarding of federal funding by the NIH or VA., Results: The median (IQR) number of baseline publications was highest among Kern Scholars compared to Kern Applicants or other CDA awardees [16 (12, 29) vs 5 (1, 11) and 8 (5, 16); P < 0.001]. After adjustment for baseline publications, the time to 15th new publication was significantly shorter for Kern Scholars than for the two comparator groups (P<0.001). Similar findings were observed with total new publications within 5 years (P < 0.001), as well as number of new first-/last-author publications within 5 years (P < 0.001). The overall frequency of K-awards, R-awards (or equivalent), or any funding were similar between groups, with the exception of R03 awards, which were significantly more common among Kern Scholars (P = 0.002)., Conclusion: The Kern Scholars program is a successful training model for clinician-scientists that demonstrated comparatively greater acceleration of scholarly productivity than other internal CDA programs., Competing Interests: The authors have no conflicts of interest to declare., (© The Association for Clinical and Translational Science 2021.)

Background: Beta-lactams (i.e., penicillins, cephalosporins, carbapenems, monobactams) are the most widely used class of antibiotics in critically ill patients. There is substantial interpatient variability in beta-lactam pharmacokinetics which renders their effectiveness and safety largely unpredictable. One strategy to ensure achievement of therapeutic concentrations is drug level testing ("therapeutic drug monitoring"; TDM). While studies have suggested promise with beta-lactam TDM, it is not yet widely available or implemented. This protocol presents a mixed-methods study designed to examine healthcare practitioners' perspectives on the use and implementation of beta-lactam TDM in the critically ill., Methods: An explanatory sequential mixed-methods design will be used [QUANT → qual]. First, quantitative data will be collected through a web-based questionnaire directed at clinicians at three academic medical centers at different phases of beta-lactam TDM implementation (not yet implemented, partially implemented, fully implemented). The sampling frame will include providers from a variety of disciplines that interact with drug level testing and interpretation in the critical care environment including pharmacists, intensivists, infectious diseases experts, medical/surgical trainees, and advanced practice providers. Second, approximately 30 individuals will be purposively sampled from survey respondents to conduct in-depth qualitative interviews to explain and expand upon the results from the quantitative strand. Normalization Process Theory and the Consolidated Framework for Implementation Science will be used to guide data analysis., Discussion: These data will be used to answer two specific questions: "What are ICU practitioners' perspectives on implementing beta-lactam TDM?" and "What factors contribute to the success of beta-lactam TDM program implementation?" Results of this study will be used to design future implementation strategies for beta-lactam TDM programs in the critically ill., Trial Registration: NCT04755777 .

Background: Recent evidence suggests the need to reframe healthcare delivery for patients with chronic conditions, with emphasis on minimizing healthcare footprint/workload on patients, caregivers, clinicians and health systems through the proposed Minimally Disruptive Medicine (MDM) care model named. HIV care models have evolved to further focus on understanding barriers and facilitators to care delivery while improving patient-centered outcomes (e.g., disease progression, adherence, access, quality of life). It is hypothesized that these models may provide an example of MDM care model in clinic practice. Therefore, this study aimed to observe and ascertain MDM-concordant and discordant elements that may exist within a tertiary-setting HIV clinic care model for patients living with HIV or AIDS (PLWHA). We also aimed to identify lessons learned from this setting to inform improving the feasibility and usefulness of MDM care model., Methods: This qualitative case study occurred in multidisciplinary HIV comprehensive-care clinic within an urban tertiary-medical center. Participants included Adult PLWHA and informal caregivers (e.g. family/friends) attending the clinic for regular appointments were recruited. All clinic staff were eligible for recruitment. Measurements included; semi-guided interviews with patients, caregivers, or both; semi-guided interviews with varied clinicians (individually); and direct observations of clinical encounters (patient-clinicians), as well as staff daily operations in 2015-2017. The qualitative-data synthesis used iterative, mainly inductive thematic coding., Results: Researcher interviews and observations data included 28 patients, 5 caregivers, and 14 care-team members. With few exceptions, the clinic care model elements aligned closely to the MDM model of care through supporting patient capacity/abilities (with some patients receiving minimal social support and limited assistance with reframing their biography) and minimizing workload/demands (with some patients challenged by the clinic hours of operation)., Conclusions: The studied HIV clinic incorporated many of the MDM tenants, contributing to its validation, and informing gaps in knowledge. While these findings may support the design and implementation of care that is both minimally disruptive and maximally supportive, the impact of MDM on patient-important outcomes and different care settings require further studying.

Tactics to increase the number of underrepresented (UR) students in biomedical research PhD training programs have not yet translated to UR faculty numbers that reflect the diversity of the United States. Continued interventions are required to build skills beyond those that result in placement into a PhD program. We hypothesize that successful interventions must build skills that give UR students foundations for confident self-efficacy in leadership. We seek interventions that allow UR students to envision themselves as successful faculty. We posit that development of such skills is difficult in the classroom or laboratory alone. Therefore, novel interventions are required. As part of the NIH-funded Post-baccalaureate Research Education Program (PREP) and Initiative for Maximizing Student Development (IMSD) at the Mayo Clinic Graduate School of Biomedical Sciences, we designed and implemented a unique intervention to support development of student leadership skills: a biannual student-organized and student-led national research conference titled "Scientific Innovation Through Diverse Perspectives" (SITDP). This initiative is based on the concept that students who actively live out realistic roles as scientific leaders will be encouraged to persist to scientific leadership as faculty. Here we describe the motivation for, design of, and outcomes from, the first three pilot conferences of this series. We further discuss approaches needed to rigorously evaluate the effectiveness of such interventions in the future., Competing Interests: Conflict of Interest: The handling editor declared a past co-authorship with one of the authors JLL. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Background: Chronic conditions are placing a serious burden on individuals as well as the health care system. Health coaching (HC) has emerged as a promising approach that can support effective lifestyle interventions for chronic conditions. However, until now there is no particularly comprehensive systematic review of HC impact on a chronic condition from the angle of patient improvement and detail coaching characteristics reported., Objective: To synthesize available studies on the efficacy and current status of HC interventions on the health of chronically ill adult patients., Methods: The literature search will be conducted for trials published in English within the past four years. Electronic databases CINAHL, Cochrane Library, Embase, MEDLINE, and Scopus will be searched with keywords describing HC for chronic diseases. Randomized controlled trials that compare HC interventions to conventional care or other alternative therapies will be included. Data extraction will be conducted by two reviewers independently, and enrolled trials will be evaluated for quality and bias assessment. If appropriate, meta-analysis will be conducted on the last stage of the review; otherwise, the study findings will be described narratively. The software Review Manager (Revman version 5.3.5.) provided by the Cochrane Collaboration will be applied for the meta-analysis., Results: This is the first study to comprehensively explore the effectiveness and current status of HC intervention for patients with chronic conditions., Discussion: Study findings from this review will advance the appropriate utilization of coaching practice by determining whether HC is effective and feasible among patients with chronic disease. If proven effective, this approach may be applied more broadly through public health interventions. The current status findings will also provide evidence to inform decisions for integrating HC interventions into the current management pathway for individuals with chronic conditions., Systematic Review Registration: PROSPERO CRD42020153280.

Objective: To qualitatively evaluate the implementation of Capacity Coaching, an intervention to address the work patients must undertake to manage their conditions, implemented as a quality improvement pilot in 1 of 2 implementing US Department of Veterans Affairs medical centers., Participants and Methods: Two Veterans Affairs medical centers in the Midwest sought to implement Capacity Coaching as a quality improvement pilot in their Patient-Aligned Care Teams for 6 months (April 1, 2017, through October 31, 2017). Following the pilot, we conducted a focused ethnographic evaluation (on-site data collection, January 2-4, 2018), including interviews, a focus group, and observations with staff at one site to assess the implementation of capacity coaching. Data were analyzed inductively and findings were cross-referenced with implementation theory., Results: We found that implementation was feasible and achieved changes that were aligned with reducing patient work and increasing capacity. We found that the key facilitators for the implementation of this program were in participants making sense of the intervention (coherence) and working collectively to enact the program (collective action). The main challenges for the program were in planning the work of implementation and enrolling a diverse coalition of staff to expand referrals to the program (cognitive participation) and in evaluating the impact of the program on outcomes that upper leadership was interested in (reflexive monitoring)., Conclusion: Implementation of Capacity Coaching is feasible in clinical practice and may be a promising intervention for the care of chronic conditions. Further research should focus on testing capacity coaching using these lessons learned., (© 2019 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc.)

Background: Patients with multiple chronic conditions represent a growing segment for healthcare. The Chronic Care Model (CCM) supports leveraging community programs to support patients and their caregivers overwhelmed by their treatment plans, but this component has lagged behind the adoption of other model elements. Community Care Teams (CCTs) leverage partnerships between healthcare delivery systems and existing community programs to address this deficiency. There remains a gap in moving CCTs from pilot phase to sustainable full-scale programs. Therefore, the purpose of this study was to identify the cognitive and structural needs of clinicians, social workers, and nurse care coordinators to effectively refer appropriate patients to the CCT and the value these stakeholders derived from referring to and receiving feedback from the CCT. We then sought to translate this knowledge into an implementation toolkit to bridge implementation gaps., Methods: Our research process was guided by the Assess, Innovate, Develop, Engage, and Devolve (AIDED) implementation science framework. During the Assess process we conducted chart reviews, interviews, and observations and in Innovate and Develop phases, we worked with stakeholders to develop an implementation toolkit. The Engage and Devolve phases disseminate the toolkit through social networks of clinical champions and are ongoing., Results: We completed 14 chart reviews, 11 interviews, and 2 observations. From these, facilitators and barriers to CCT referrals and patient re-integration into primary care were identified. These insights informed the development of a toolkit with seven components to address implementation gaps identified by the researchers and stakeholders., Conclusion: We identified implementation gaps to sustaining the CCT program, a community-healthcare partnership, and used this information to build an implementation toolkit. We established liaisons with clinical champions to diffuse this information. The AIDED Model, not previously used in high-income countries' primary care settings, proved adaptable and useful.

Purpose: To pilot test the impact of the ICAN Discussion Aid on clinical encounters., Methods: A pre-post study involving 11 clinicians and 100 patients was conducted at two primary care clinics within a single health system in the Midwest. The study examined clinicians' perceptions about ICAN feasibility, patients' and clinicians' perceptions about encounter success, videographic differences in encounter topics, and medication adherence 6 months after an ICAN encounter., Results: 39/40 control encounters and 45/60 ICAN encounters yielded usable data. Clinicians reported ICAN use was feasible. In ICAN encounters, patients discussed diet, being active and taking medications more. Clinicians scored themselves poorer regarding visit success than their patients scored them; this effect was more pronounced in ICAN encounters. ICAN did not improve 6-month medication adherence or lengthen visits., Conclusion: This pilot study suggests that using ICAN in primary care is feasible, efficient and capable of modifying conversations. With lessons learned in this pilot, we are conducting a randomised trial of ICAN versus usual care in diverse clinical settings., Trial Registration Number: NCT02390570., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: This study assesses the attitudes and preferences of Chinese clinicians toward their involvement in shared decision making (SDM)., Methods: From May 2014 to May 2015, 200 Chinese clinicians from two hospitals were enrolled to complete a survey on their attitude towards SDM. We conducted the survey via face-to-face interviews before and after an educational intervention on SDM among young Chinese clinicians. The clinicians were asked to give the extent of agreement to SDM. They also gave the extent of difficulty in using decision aids (DAs) during the SDM process. The variation in the range of responses to each question before and after the SDM intervention was recorded. The frequency of changed responses was analyzed by using JMP 6.0 software. Data were statistically analyzed using Chi-square and Mann-Whitney U tests, as appropriate to the data type. Multiple logistic regressions were used to test for those factors significantly and independently associated with preference for an approach for each scenario., Results: Of the 200 young Chinese clinicians sampled, 59.0% indicated a preference for SDM and a desire to participate in SDM before receiving education or seeing the DA, and this number increased to 69.0% after seeing the DA with the sample video of the SDM process on Statin Choice. However, 28.5% of the respondents still reported that, in their current practice, they make clinical decisions on behalf of their patients. The clinicians who denied a desire to use the DA stated that the main barriers to implement SDM or DA use in China are lack of time and knowledge of SDM., Conclusions: Most young Chinese clinicians want to participate in SDM. However, they state the main barriers to perform SDM are lack of experience and time. The educational intervention about SDM that exposes clinicians to DAs was found to increase their receptivity.

Background: Guidelines recommend shared decision making (SDM) for determining whether to use statins to prevent cardiovascular events in at-risk patients. We sought to develop a toolkit to facilitate the cross-organizational spread and scale of a SDM intervention called the Statin Choice Conversation Aid (SCCA) by (i) assessing the work stakeholders must do to implement the tool; and (ii) orienting the resulting toolkit's components to communicate and mitigate this work., Methods: We conducted multi-level and mixed methods (survey, interview, observation, focus group) characterizations of the contexts of 3 health systems (n = 86, 84, and 26 primary care clinicians) as they pertained to the impending implementation of the SCCA. We merged the data within implementation outcome domains of feasibility, appropriateness, and acceptability. Using Normalization Process Theory, we then characterized and categorized the work stakeholders did to implement the tool. We used clinician surveys and IP address-based tracking to calculate SCCA usage over time and judged how stakeholder effort was allocated to influence outcomes at 6 and 18 months. After assessing the types and impact of the work, we developed a multi-component toolkit., Results: At baseline, the three contexts differed regarding feasibility, acceptability, and appropriateness of implementation. The work of adopting the tool was allocated across many strategies in complex and interdependent ways to optimize these domains. The two systems that allocated the work strategically had higher uptake (5.2 and 2.9 vs. 1.1 uses per clinician per month at 6 months; 3.8 and 2.1 vs. 0.4 at 18 months, respectively) than the system that did not. The resulting toolkit included context self-assessments intended to guide stakeholders in considering the early work of SCCA implementation; and webinars, EMR integration guides, video demonstrations, and an implementation team manual aimed at supporting this work., Conclusions: We developed a multi-component toolkit for facilitating the scale-up and spread of a tool to promote SDM across clinical settings. The theory-based approach we employed aimed to distinguish systems primed for adoption and support the work they must do to achieve implementation. Our approach may have value in orienting the development of multi-component toolkits and other strategies aimed at facilitating the efficient scale up of interventions., Trial Registration: ClinicalTrials.gov NCT02375815 .

The prevalence of chronic conditions is growing; to date, 1 in 4 Americans lives with at least one chronic condition. In the population aged 65 years and older, most live with multiple chronic conditions, or multimorbidity. Coaching interventions have been widely touted as a potential way to prevent chronic illness and as a way to help patients better self-manage their chronic illnesses. Health and Wellness Coaching (HWC) is now a respected discipline that offers certification, and HWC for patients with chronic conditions has demonstrated the potential to positively change behaviors and health outcomes. Yet, despite the enthusiasm and advancement of the discipline, the role of HWC has not been examined in light of the latest conceptual and theoretical work in the treatment of multimorbidity. In this article, we briefly describe HWC activities and the way in which they can be modified in alignment with the progress in the field of multimorbidity to form a new type of coaching, Capacity Coaching., (Copyright © 2018 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.)

Background: Patients with chronic conditions must mobilize capacity to access and use healthcare and enact self-care. In order for clinicians to create feasible treatment plans with patients, they must appreciate the limits and possibilities of patient capacity. This study seeks to characterize the amount, nature, and comprehensiveness of the information about patient capacity documented in the medical record., Methods: In this mixed-methods study, we extracted notes about 6 capacity domains from the medical records of 100 patients receiving care from 15 primary care clinicians at a single practice. Using a generalized linear model to account for repeated measures across multiple encounters, we calculated the rate of documented domains per encounter per patient adjusted for appointment type and number. Following quantitative analyses, we purposefully selected records to conduct inductive content analysis., Results: After adjusting for number of appointments and appointment type, primary care notes contained the most mentions of capacity. Physical capacity was most noted, followed by personal, emotional, social, financial, and environmental. Qualitatively, we found three documentation patterns: patients with broad capacity notes, patients with predominantly physical domain capacity notes, and patients with capacity notes mostly in domains other than physical. Records contained almost no mention of patients' environmental or financial capacity, or of how they coped with capacity limitations. Rarely, did notes ever mention how well patients interacted with their social network or what support they provided to the patient in managing their health., Conclusion: Medical records scarcely document patient capacity. This may impair the ability of clinicians to determine how patients can handle patient work, at what point patient capacity might become overwhelmed leading to poor adherence and health outcomes, and how best to craft feasible treatment programs that patients can implement with high fidelity.

Background: The Chronic Care Model (CCM) emerged in the 1990s as an approach to re-organize primary care and implement critical elements that enable it to proactively attend to patients with chronic conditions. The chronic care landscape has evolved further, as most patients now present with multiple chronic conditions and increasing psychosocial complexity. These patients face accumulating and overwhelming complexity resulting from the sum of uncoordinated responses to each of their problems. Minimally Disruptive Medicine (MDM) was proposed to respond to this challenge, aiming at improving outcomes that matter to patients with the smallest burden of treatment. We sought to critically appraise the extent to which MDM constructs (e.g., reducing patient work, improving patients' capacity) have been adopted within CCM implementations., Methods: We conducted a systematic review and qualitative thematic synthesis of reports of CCM implementations published from 2011-2016., Results: CCM implementations were mostly aligned with the healthcare system's goals, condition-specific, and targeted disease-specific outcomes or healthcare utilization. No CCM implementation addressed patient work. Few reduced treatment workload without adding additional tasks. Implementations supported patient capacity by offering information, but rarely offered practical resources (e.g., financial assistance, transportation), helped patients reframe their biography with chronic illness, or assisted them in engaging with a supportive social network. Few implementations aimed at improving functional status or quality of life, and only one-third of studies were targeted for patients of low socioeconomic status., Conclusion: MDM provides a lens to operationalize how to care for patients with multiple chronic conditions, but its constructs remain mostly absent from how implementations of the CCM are currently reported. Improvements to the primary care of patients with multimorbidity may benefit from the application of MDM, and the current CCM implementations that do apply MDM constructs should be considered exemplars for future implementation work.

Purpose of Review: Patients with diabetes must deal with the burden of symptoms and complications (burden of illness). Simultaneously, diabetes care demands practical and emotional work from patients and their families, work to access and use healthcare and to enact self-care (burden of treatment). Patient work must compete with the demands of family, job, and community life. Overwhelmed patients may not have the capacity to access care or enact self-care and will thus experience suboptimal diabetes outcomes., Recent Findings: Minimally disruptive medicine (MDM) is a patient-centered approach to healthcare that prioritizes patients' goals for life and health while minimizing the healthcare disruption on patients' lives. In patients with diabetes, particularly in those with complex lives and multimorbidity, MDM coordinates healthcare and community responses to improve outcomes, reduce treatment burden, and enable patients to pursue their life's hopes and dreams.

Background: The needs of the growing population of complex patients with multiple chronic conditions calls for a different approach to care. Clinical teams need to acknowledge, respect, and support the work that patients do and the capacity they mobilize to enact this work, and to adapt and self-manage. Tools that enable this approach to care are needed., Methods: Using user-centered design principles, we set out to create a discussion aid for use by patients, clinicians, and other health professionals during clinical encounters. We observed clinical encounters, visited patient homes, and dialogued with patient support groups. We then developed and tested prototypes in routine clinical practice. Then we refined a final prototype with extensive stakeholder feedback., Results: From this process resulted the ICAN Discussion Aid, a tool completed by the patient and reviewed during the consultation in which patients classified domains that contribute to capacity as sources of burden or satisfaction; clinical demands were also classified as sources of help or burden. The clinical review facilitated by ICAN generates hypotheses regarding why some treatment plans may be problematic and may not be enacted in the patient's situation., Conclusion: We successfully created a discussion aid to elucidate and share insights about the capacity patients have to enact the treatment plan and hypotheses as to why this plan may or may not be enacted. Next steps involve the evaluation of the impact of the ICAN Discussion Aid on clinical encounters with a variety of health professionals and the impact of ICAN-informed treatment plans on patient-important outcomes.

Background: Life and healthcare demand work from patients, more so from patients living with multimorbidity. Patients must respond by mobilizing available abilities and resources, their so-called capacity. We sought to summarize accounts of challenges that reduce patient capacity to access or use healthcare or to enact self-care while carrying out their lives., Methods: We conducted a systematic review and synthesis of the qualitative literature published since 2000 identifying from MEDLINE, EMBASE, Psychinfo, and CINAHL and retrieving selected abstracts for full text assessment for inclusion. After assessing their methodological rigor, we coded their results using a thematic synthesis approach., Results: The 110 reports selected, when synthesized, showed that patient capacity is an accomplishment of interaction with (1) the process of rewriting their biographies and making meaningful lives in the face of chronic condition(s); (2) the mobilization of resources; (3) healthcare and self-care tasks, particularly, the cognitive, emotional, and experiential results of accomplishing these tasks despite competing priorities; (4) their social networks; and (5) their environment, particularly when they encountered kindness or empathy about their condition and a feasible treatment plan., Conclusion: Patient capacity is a complex and dynamic construct that exceeds "resources" alone. Additional work needs to translate this emerging theory into useful practice for which we propose a clinical mnemonic (BREWS) and the ICAN Discussion Aid.

Background: Chronic conditions are increasingly more common and negatively impact quality of life, disability, morbidity, and mortality. Health coaching has emerged as a possible intervention to help individuals with chronic conditions adopt health supportive behaviors that improve both quality of life and health outcomes., Methods/design: We planned a systematic review and meta-analysis of the contemporary health coaching literature published in the last decade to evaluate the effect of health coaching on clinically important, disease-specific, functional, and behavioral outcomes. We will include randomized controlled trials or quasi-experimental studies that compared health coaching to alternative interventions or usual care. To enable adoption of effective interventions, we aim to explore how the effect of intervention is modified by the intervention components, delivering personnel (i.e., health professionals vs trained lay or peer persons), dose, frequency, and setting. Analysis of intervention outcomes will be reported and classified using an existing theoretical framework, the Theory of Patient Capacity, to identify the areas of patients' capacity to access and use healthcare and enact self-care where coaching may be an effective intervention., Discussion: This systematic review and meta-analysis will identify and synthesize evidence to inform the practice of health coaching by providing evidence on components and characteristics of the intervention essential for success in individuals with chronic health conditions., Systematic Review Registration: PROSPERO CRD42016039730.

Background: Chronic conditions burden patients with illness and treatments. We know little about the disruption of life by the work of dialysis in relation to the resources patients can mobilize, that is, their capacity, to deal with such demands. We sought to determine the disruption of life by dialysis and its relation to patient capacity to cope., Methods: We administered a survey to 137 patients on dialysis at an academic medical center. We captured disruption from illness and treatment, and physical, mental, personal, social, financial, and environmental aspects of patient capacity using validated scales. Covariates included number of prescriptions, hours spent on health care, existence of dependents, age, sex, and income level., Results: On average, patients reported levels of capacity and disruption comparable to published levels. In multivariate regression models, limited physical, financial, and mental capacity were significantly associated with greater disruption. Patients in the top quartile of disruption had lower-than-expected physical, financial, and mental capacity., Conclusions: Our sample generally had capacity comparable to other populations and may be able to meet the demands imposed by treatment. Those with reduced physical, financial, and mental capacity reported higher disruption and represent a vulnerable group that may benefit from innovations in minimally disruptive medicine., (Copyright © 2016 The Authors. Published by Elsevier Inc. All rights reserved.)

Importance: Poor mental health places a burden on individuals and populations. Resilient persons are able to adapt to life's challenges and maintain high quality of life and function. Finding effective strategies to bolster resilience in individuals and populations is of interest to many stakeholders., Objectives: To synthesize the evidence for resiliency training programs in improving mental health and capacity in 1) diverse adult populations and 2) persons with chronic diseases., Data Sources: Electronic databases, clinical trial registries, and bibliographies. We also contacted study authors and field experts., Study Selection: Randomized trials assessing the efficacy of any program intended to enhance resilience in adults and published after 1990. No restrictions were made based on outcome measured or comparator used., Data Extraction and Synthesis: Reviewers worked independently and in duplicate to extract study characteristics and data. These were confirmed with authors. We conducted a random effects meta-analysis on available data and tested for interaction in planned subgroups., Main Outcomes: The standardized mean difference (SMD) effect of resiliency training programs on 1) resilience/hardiness, 2) quality of life/well-being, 3) self-efficacy/activation, 4) depression, 5) stress, and 6) anxiety., Results: We found 25 small trials at moderate to high risk of bias. Interventions varied in format and theoretical approach. Random effects meta-analysis showed a moderate effect of generalized stress-directed programs on enhancing resilience [pooled SMD 0.37 (95% CI 0.18, 0.57) p = .0002; I2 = 41%] within 3 months of follow up. Improvement in other outcomes was favorable to the interventions and reached statistical significance after removing two studies at high risk of bias. Trauma-induced stress-directed programs significantly improved stress [-0.53 (-1.04, -0.03) p = .03; I2 = 73%] and depression [-0.51 (-0.92, -0.10) p = .04; I2 = 61%]., Conclusions: We found evidence warranting low confidence that resiliency training programs have a small to moderate effect at improving resilience and other mental health outcomes. Further study is needed to better define the resilience construct and to design interventions specific to it., Registration Number: PROSPERO #CRD42014007185.

Objective: Although the assistance of caregivers is critical to patients undertaking self-care, little is known about their participation in visits and involvement in decision making. We sought to examine this caregiver participation in shared decision making through videographic analysis., Methods: We identified video recordings from outpatient visits in which a healthcare professional, patient, and caregiver participated, drawn from five practice-based randomized trials testing the efficacy of decision aids vs. usual care. Two reviewers, working independently, coded videos to explore caregiver engagement in the clinical encounter, clinician facilitation of that engagement, and the influence of decision aids in the engagement process., Results: In most of the 37 videos coded, caregivers' participation was self-triggered. We saw no impact of the use of decision aids on caregiver participation. Clinicians did not address the caregivers' preferred level of involvement in decision making in any of the video recorded encounters analyzed., Conclusion: In this analysis, most clinicians did not engage caregivers in outpatient visits for chronic care. While the use of decision aids improves communication between patient and clinician, they do not appear to affect caregiver involvement during consultations., Practice Implications: Research on the comparative effectiveness of ways to engage caregivers to optimize patient-important outcomes, including enhancing the shared decision making process is necessary., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)

Background: Chronic conditions are a major source of morbidity, mortality and cost worldwide. Shared decision making is one way to improve care for patients with chronic conditions. Although it has been widely studied, the effect of shared decision making in the context of chronic conditions is unknown., Methods/design: We will perform a systematic review with the objective of determining the effectiveness of shared decision making interventions for persons diagnosed with chronic conditions. We will search the following databases for relevant articles: PubMed, Scopus, Ovid MEDLINE, Ovid EMBASE, Ovid EBM Reviews CENTRAL, CINAHL, and Ovid PsycInfo. We will also search clinical trial registries and contact experts in the field to identify additional studies. We will include randomized controlled trials studying shared decision making interventions in patients with chronic conditions who are facing an actual decision. Shared decision making interventions will be defined as any intervention aiming to facilitate or improve patient and/or clinician engagement in a decision making process. We will describe all studies and assess their quality. After adjusting for missing data, we will analyze the effect of shared decision making interventions on outcomes in chronic conditions overall and stratified by condition. We will evaluate outcomes according to an importance ranking informed by a variety of stakeholders. We will perform several exploratory analyses including the effect of author contact on the estimates of effect., Discussion: We anticipate that this systematic review may have some limitations such as heterogeneity and imprecision; however, the results will contribute to improving the quality of care for individuals with chronic conditions and facilitate a process that allows decision making that is most consistent with their own values and preferences., Trial Registration: PROSPERO Registration Number: CRD42013005784.

Context: Significant uncertainty remains surrounding the diagnostic accuracy of sonographic features used to predict the malignant potential of thyroid nodules., Objective: The objective of the study was to summarize the available literature related to the accuracy of thyroid nodule ultrasound (US) in the prediction of thyroid cancer., Methods: We searched multiple databases and reference lists for cohort studies that enrolled adults with thyroid nodules with reported diagnostic measures of sonography. A total of 14 relevant US features were analyzed., Results: We included 31 studies between 1985 and 2012 (number of nodules studied 18,288; average size 15 mm). The frequency of thyroid cancer was 20%. The most common type of cancer was papillary thyroid cancer (84%). The US nodule features with the highest diagnostic odds ratio for malignancy was being taller than wider [11.14 (95% confidence interval 6.6-18.9)]. Conversely, the US nodule features with the highest diagnostic odds ratio for benign nodules was spongiform appearance [12 (95% confidence interval 0.61-234.3)]. Heterogeneity across studies was substantial. Estimates of accuracy depended on the experience of the physician interpreting the US, the type of cancer and nodule (indeterminate), and type of reference standard. In a threshold model, spongiform appearance and cystic nodules were the only two features that, if present, could have avoided the use of fine-needle aspiration biopsy., Conclusions: Low- to moderate-quality evidence suggests that individual ultrasound features are not accurate predictors of thyroid cancer. Two features, cystic content and spongiform appearance, however, might predict benign nodules, but this has limited applicability to clinical practice due to their infrequent occurrence.

Background: Resilience has been defined as the ability of individuals to manage and adapt to stress and life challenges. Training programs that develop and/or enhance resilience may have efficacy in improving health, well-being, and quality of life. Because patients with chronic conditions must reliably self-manage their health, strategies to bolster resilience in this population may be of particular value. The objectives of this systematic review are to synthesize the evidence of resilience training program efficacy in improving outcomes related to quality of life, self-efficacy and activation, and resilience and coping ability in: 1) diverse adult populations; and 2) patients with chronic conditions., Methods/design: We will conduct a systematic review of randomized controlled trials assessing the efficacy of any program designed to enhance resilience in adults that measure any outcome against any comparator. We will search multiple electronic databases, trial registries, bibliographies, and will contact authors and experts to identify studies. We will use systematic review software to independently and in duplicate screen reports and extract data. We will extract characteristics of the study populations, interventions, comparators, outcomes, and quality/risk of bias. Primary, patient reported outcomes will be categorized into domains of quality of life, self-efficacy, and resilience. Secondary outcomes will be considered based on findings of the review. We will attempt meta-analysis by pooling standardized mean differences and minimally important differences (MIDs), when possible. Planned trial subgroup analyses are: 1) studies of patients with chronic conditions; 2) studies with placebo controls; 3) studies with similar intervention characteristics; and 4) studies with common lengths of follow-up., Discussion: This study is intended to accumulate the evidence for resilience training programs in improving quality of life, resilience, and self-efficacy for care management, particularly among adult patients with chronic conditions. Its findings will be valuable to policy-makers, funding agencies, clinicians, and patients seeking innovative and effective ways to achieve patient-centered care., Trial Registration: PROSPERO registration number: CRD42014007185.