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Abstract Background Existing literature on mood disorders suggests that the demographic distribution of bipolar disorder may differ from that of unipolar depression, and also that bipolar disorder may be especially disruptive to personal functioning. Yet, few studies have directly compared the populations with unipolar depressive and bipolar disorders, whether in terms of demographic characteristics or personal limitations. Furthermore, studies have generally examined work-related costs, without fully investigating the extensive personal limitations associated with diagnoses of specific mood disorders. The purpose of the present study is to compare, at a national level, the demographic characteristics, work productivity, and personal limitations among individuals diagnosed with bipolar disorder versus those diagnosed with unipolar depressive disorders and no mood disorder. Methods The Medical Expenditure Panel Survey 2004-2006, a nationally representative survey of the civilian, non-institutionalized U.S. population, was used to identify individuals diagnosed with bipolar disorder and unipolar depressive disorders based on ICD-9 classifications. Outcomes of interest were indirect costs, including work productivity and personal limitations. Results Compared to those with depression and no mood disorder, higher proportions of the population with bipolar disorder were poor, living alone, and not married. Also, the bipolar disorder population had higher rates of unemployment and social, cognitive, work, and household limitations than the depressed population. In multivariate models, patients with bipolar disorder or depression were more likely to be unemployed, miss work, and have social, cognitive, physical, and household limitations than those with no mood disorder. Notably, findings indicated particularly high costs for bipolar disorder, even beyond depression, with especially large differences in odds ratios for non-employment (4.6 for bipolar disorder versus 1.9 for depression, with differences varying by gender), social limitations (5.17 versus 2.85), cognitive limitations (10.78 versus 3.97), and work limitations (6.71 versus 3.19). Conclusion The bipolar disorder population is distinctly more vulnerable than the population with depressive disorder, with evidence of fewer personal resources, lower work productivity, and greater personal limitations. More systematic analysis of the availability and quality of care for patients with bipolar disorder is encouraged to identify effectively tailored treatment interventions and maximize cost containment.

Background: Medicare Advantage (MA) plans may offer more benefits and lower costs relative to Traditional Medicare (TM), but may also provide narrower provider networks and pre-authorization requirements. We explore the impact of a cancer diagnosis on switching between MA and TM after diagnosis., Methods: We used the 2015-2019 Surveillance, Epidemiology and End Results-Medicare data to examine patterns of switching between MA and TM after cancer relative to those without cancer. We used binomial generalized estimating equations to evaluate the cancer and sociodemographic characteristics of those with higher probabilities of switching., Results: Among those initially enrolled in MA plans (39.27% of those with vs 40.79% without cancer), 3.76% of individuals with cancer switched to TM compared to 2.23% without cancer. For those initially enrolled in TM, 2.96% of individuals with cancer switched to MA vs 4.35% without cancer. Multivariable analyses demonstrated that, among individuals starting in MA, a cancer diagnosis was associated with a 52.02% increase in switching relative to those without cancer, whereas among those starting in TM, a cancer diagnosis was associated with a 26.90% reduction in switching. Younger individuals, males, dual-eligible, those with more comorbidities, rural-dwellers, and those living in zip codes with higher education and income levels also had higher probabilities of switching from MA to TM., Conclusions: Prior to diagnosis, MA enrollment is comparable between individuals with and without cancer. However, after diagnosis, individuals with cancer have higher probability of switching from MA to TM and lower probability of switching from TM to MA., (Published by Oxford University Press 2025.)

Objective: Patients with heart failure (HF) perform a variety of self-care activities to control symptoms and minimise the risk of HF decompensations. The objective of this study was to understand how patients build capacity and manage the work of living with HF., Design: A qualitative study using semi-structured telephone interviews. The interview guide was informed by the Cumulative Complexity Model, a conceptual framework that focuses on a patient's workload and their capacity to manage that work. Interview transcripts were analysed using a mixed inductive and deductive coding approach with organisation into larger thematic categories., Setting: Southeastern Minnesota USA (11 counties) with capture of data from local community healthcare providers under the auspices of the Rochester Epidemiology Project., Participants: Intentional sampling of local patients with HF (n=24, median age 69.5 years, 54% women, 63% rural, 54% preserved ejection fraction) who reported high treatment burden and/ or poor health status on a questionnaire., Results: Three major themes emerged: using capacity to manage workload, disruptions resulting in workload exceeding capacity and regaining workload-capacity balance. Participants described routinising the daily tasks associated with living with HF to minimise the associated burden and identified disruptions to their routines, including hospitalisations, emergency room visits, worsening health status and changes in healthcare access. To accommodate disruptions and regain workload-capacity balance, participants decreased workload and/or transferred tasks to others to maximise capacity., Conclusions: Participants with HF described managing patient workload in times of stable health, but they sometimes struggled to accommodate disruptions and worsening health status. These findings can inform the design of interventions to minimise workload, maximise capacity and improve quality of life for patients with HF., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ Group.)

Purpose: In this study, we explore the barriers and facilitators to diabetes medication adherence and self-management for people with type 2 diabetes who have experienced homelessness., Methods: We conducted five focus groups and two interviews with 26 participants. Our multi-disciplinary analysis team utilized principles of grounded theory and conducted thematic analysis with an inductive, iterative process to identify central themes., Results: The majority of participants identified as Black/African American and over half stayed in shelters or had no steady place to stay at enrollment. Three key themes emerged regarding medication adherence and diabetes self-management for people who have experienced homelessness: personal autonomy and security, predictability and stability, and supportive, knowledgeable relationships (both social and medical). We define personal autonomy and security as individual agency and choice when making decisions related to one's health and well-being as well as protection from risk or harm to one's physical or psychological well-being, belongings, or means of income. Predictability and stability take place through the development of a system of connections and routines built over time where individuals can reliably adopt and maintain diabetes self-management activities. Supportive, knowledgeable relationships include medical and social relationships that offer encouragement, information, and hands-on care promoting diabetes self-management and connection to clinical care and resources. Participants also highlighted a "domino effect" where a cascade of events negatively and consequently impacted their health and well-being. We describe the interactions of these themes, the intersection of structural vulnerability and individual social risks, and resulting impacts on medication adherence and diabetes self-management., Conclusions: Our findings highlight the structural vulnerabilities impacting people experiencing homelessness and identify inflection points of opportunity at structural and individual levels to strengthen diabetes medication adherence and self-management. This understanding can inform policy change and future tailored diabetes interventions., Competing Interests: Declarations:. Disclaimer:: The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. Conflict of Interest:: There are no conflict of interest to report., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)

Background: Learning health systems (LHSs) iteratively generate evidence that can be implemented into practice to improve care and produce generalizable knowledge. Pragmatic clinical trials fit well within LHSs as they combine real-world data and experiences with a degree of methodological rigor which supports generalizability., Objectives: We established a pragmatic clinical trial unit ("RapidEval") to support the development of an LHS. To further advance the field of LHS, we sought to further characterize the role of health information technology (HIT), including innovative solutions and challenges that occur, to improve LHS project delivery., Methods: During the period from December 2021 to February 2023, eight projects were selected out of 51 applications to the RapidEval program, of which five were implemented, one is currently in pilot testing, and two are in planning. We evaluated pre-study planning, implementation, analysis, and study closure approaches across all RapidEval initiatives to summarize approaches across studies and identify key innovations and learnings by gathering data from study investigators, quality staff, and IT staff, as well as RapidEval staff and leadership., Implementation Results: Implementation approaches spanned a range of HIT capabilities including interruptive alerts, clinical decision support integrated into order systems, patient navigators, embedded micro-education, targeted outpatient hand-off documentation, and patient communication. Study approaches include pre-post with time-concordant controls (1), randomized stepped-wedge (1), cluster randomized across providers (1) and location (3), and simple patient level randomization (2)., Conclusions: Study selection, design, deployment, data collection, and analysis required close collaboration between data analysts, informaticists, and the RapidEval team., Competing Interests: The authors have no relevant conflicts of interest to report., (© 2024 The Authors. Learning Health Systems published by Wiley Periodicals LLC on behalf of University of Michigan.)

The federal Preadmission Screening and Resident Review (PASRR) program was enacted in the 1980s amid concerns surrounding the quality of nursing home (NH) care. This program is meant to serve as a tool to assist with level of care determinations for NH applicants with serious mental illness (SMI) and was intended to limit the growth in the number of NH residents with SMI. Despite this policy effort, the prevalence of SMI in NHs has continued to increase, and little is known about the mechanisms driving the heterogeneous and suboptimal administration of the PASRR program, absent routine evaluative efforts. We conducted 20 semi-structured interviews with state and national stakeholders to identify factors affecting PASRR program administration and NH care for residents with SMI. Stakeholders expressed concern regarding fragmentation, specifically lack of clarity in the value of assessments beyond a regulatory requirement. Additionally, they cited variable program administration as contributing to fragmented communication patterns and inconsistent training across jurisdictions. Given the number of people with SMI currently residing in NHs, policy and practice should take a person-centered approach to assess how PASRR can be better used to support resident needs.

Nursing homes (NH) and other institutional-based long-term care settings are not considered an appropriate place for the care of those with serious mental illness, absent other medical conditions or functional impairment that warrants skilled care. Despite policy and regulatory efforts intended to curb the unnecessary placement of people with serious mental illness (SMI) in these settings, the number of adults with SMI who receive care in NHs has continued to rise. Through a scoping review, we sought to summarize the available literature describing NH care for adults with SMI from 2000 to 2020. We found that SMI was operationalized and measured using a variety of methods and diagnoses. Most articles focused on a national sample, with the main unit of analysis being at the NH resident-level and based on analysis of secondary data sets. Understanding current evidence about the use of NHs by older adults with SMI is important to policy and practice, especially as we continue to grapple as a nation with how to provide quality care for older adults with SMI., 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) 2022.)

Given the high prevalence of overweight/obesity and the low prevalence of engaging in physical activity in children, it is important to identify barriers that impede child physical activity. One potential barrier is parental stress. The current study examined the association between parental stress levels and girls' and boys' moderate to vigorous physical activity. Children aged 5-7 years and their families (n = 150) from 6 racial/ethnic groups (n = 25 each Black, Hispanic, Hmong, Native American, Somali, and White families) were recruited for the Family Matters mixed-methods study in 2015 through primary care clinics in Minneapolis and St Paul, MN. Two in-home visits were carried out with families 10 days apart for data collection, with an 8-day observational period in between when children wore accelerometers. Higher parental stress levels were associated with fewer minutes of moderate to vigorous physical activity in girls (P < .05) compared with boys. On average, girls with a parent reporting a stress rating of 10 engaged in 24 minutes less of physical activity per day than girls with a parent with a stress rating of 1. The results suggest that parental stress may reduce girls' engagement in physical activity. The implications of these results include targeting parental stress and coping skills in future physical activity interventions. In addition, when addressing child physical activity in health care visits with parents and daughters, providers may want to focus their anticipatory guidance on parental stress and coping skills in addition to providing resources to help parents manage stress.

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.

Background and Objectives: Though subjective age is a well-recognized risk factor for several chronic diseases, the biological basis for these associations remains poorly understood., Research Design and Methods: We used new comprehensive biomarker data from the 2016 wave of the nationally representative Health and Retirement Study (HRS) to evaluate the association between biomarker levels and self-reported subjective age in a subset of 3,740 HRS participants who provided a blood sample. We measured biomarkers in seven biological domains associated with aging: inflammation, glycemia, lipids, liver function, endocrine function, renal function, and cardiac function. The primary outcome was the age discrepancy score (subjective age - chronological age) categorized as those who felt younger, older, or the same as their chronological age (reference group). Analyses adjusted for comprehensive psychosocial factors (chronic stress index, depression score), demographic factors (race, sex, body mass index, marital status, physical activity), and prevalence of chronic health conditions (comorbidity index)., Results: The prevalence of clinically relevant reduced levels of albumin concentrations was lower in those who felt younger (8.8% vs. 16.0%; p = .006) and higher in those who felt older (20.4% vs. 16.0%; p = .03) when compared with the reference category. The prevalence of clinically significant elevation in liver enzymes such as alanine aminotransferase was also significantly lower among those who felt younger (7.1% vs. 8.6%; p = .04) when compared with the reference category. Prevalence of clinically elevated levels in cystatin C was also lower among those who felt younger when compared with the reference category (50.0% vs. 59.1%; p = .04). There was no association between lipids, glucose, or C-reactive protein (inflammatory marker) and subjective age categories., Discussion and Implications: These results suggest that people who feel younger may have favorable biomarker profiles and as a result may have lower prevalence of age-related diseases when compared with those who feel older or those who feel the same as their chronological age.

Quality of life (QOL) for patients with serious illness in late life is important for patients and policy makers and has implications for improved care delivery. This mixed-methods evaluation examined the effectiveness of a new whole-person approach to late life care-the LifeCourse-which provides patients with ongoing, across-setting assistance from lay health care workers, supported by a clinical team. We investigated whether participation in LifeCourse improves QOL for intervention patients, compared with usual care controls. QOL was assessed using baseline and 6 months Functional Assessment of Chronic Illness Therapy-Palliative version tool ( n = 181 patients and 126 controls). LifeCourse had a significant positive effect on overall QOL for patients when compared with controls. Interview data revealed that participants adjusted expectations when assessing QOL and actively sought out ways to maintain QOL with meaningful activities and needed services. LifeCourse offers a promising model for improving QOL for late life patients.

Background: The expansion of Medicaid as part of the Affordable Care Act opened new opportunities to provide health coverage to low-income adults who may be involved in other public sectors., Objective: The main objective of this study was to describe cross-sector utilization patterns among urban Medicaid expansion enrollees., Research Design: We merged data from 4 public sectors (health care, human services, housing, and criminal justice) for 98,282 Medicaid expansion enrollees in Hennepin County, MN. We fit a latent class model to indicators of cross-sector involvement., Measures: Indicator variables described involvement levels within each sector from March 2011 through December 2014. Demographic and chronic condition indicators were included post hoc to characterize classes., Results: We found 6 archetypes of cross-sector involvement: The "Low Contact" class (33.9%) had little involvement in any public sector; "Primary Care" (26.3%) had moderate, stable health care utilization; "Health and Human Services" (15.3%) had high rates of health care and cash assistance utilization; "Minimal Criminal History" (11.0%) had less serious criminal justice involvement; "Cross-sector" (7.8%) had elevated emergency department use, involvement in all 4 sectors, and the highest prevalence of behavioral health conditions; "Extensive Criminal History" (5.7%) had serious criminal justice involvement. The 3 most expensive classes (Health and Human Services, Cross-sector, and Extensive Criminal History) had the highest rates of behavioral health conditions. Together, they comprised 29% of enrollees and 70% of total public costs., Conclusions: Medicaid expansion enrollees with behavioral health conditions deserve focus due to the high cost-reduction potential across public sectors. Cross-sector collaboration is a plausible path to reduce costs and improve outcomes.

In this second of two papers on minimally disruptive medicine, we use the language of patient workload and patient capacity from the Cumulative Complexity Model to accomplish three tasks. First, we outline the current context in healthcare, comprised of contrasting problems: some people lack access to care and others receive too much care in an overmedicalised system, both of which reflect imbalances between patients' workloads and their capacity. Second, we identify and address five tensions and challenges between minimally disruptive medicine, the existing context, and other approaches to accessible and patient-centred care such as evidence-based medicine and greater patient engagement. Third, we outline a roadmap of three strategies toward implementing minimally disruptive medicine in practice, including large-scale paradigm shifts, mid-level add-ons to existing reform efforts, and a modular strategy using an existing 'toolkit' that is more limited in scope, but can fit into existing healthcare systems.

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.

Background: The Affordable Care Act provides for the expansion of Medicaid, which may result in as many as 16 million people gaining health insurance coverage. Yet it is unclear to what extent this coverage expansion will meaningfully increase access to health care., Objective: The objective of the study was to identify barriers that may persist even after individuals are moved to insurance and to explore racial/ethnic variation in problems accessing health care services., Research Design: Data are from a 2008 cross-sectional mixed-mode survey (mail with telephone follow-up in 4 languages), which is unique in measuring a comprehensive set of barriers and in focusing on several select understudied ethnic groups. We examine racial/ethnic variation in cost and coverage, access, and provider-related barriers. The study adhered to a community-based participatory research process., Subjects: Surveys were obtained from a stratified random sample of adults enrolled in Minnesota Health Care Programs who self-report ethnicity as white, African American, American Indian, Hispanic, Hmong, or Somali (n=1731)., Results: All enrollees reported barriers to getting needed care; enrollees from minority cultural groups (Hmong and American Indian in particular) were more likely to experience problems than whites. Barriers associated with cost and coverage were the most prevalent, with 72% of enrollees reporting 1 or more of these problems. Approximately 63% of enrollees reported 1 or more access barriers. Provider-related barriers were the least prevalent (about 29%) yet revealed the most pervasive disparities., Conclusions: Many challenges to care persist for publicly insured adults, particularly minority racial and ethnic groups. The ACA expansion of Medicaid, although necessary, is not sufficient for achieving improved and equitable access to care.

Background: In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment., Discussion: As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization., Summary: Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.

Background: A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?, Methods: We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach., Results: We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement., Conclusions: Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

Purpose of Review: The concept of treatment burden is receiving increasing attention and this review seeks to show that treatment burden is an important issue for end-of-life care in those with advanced heart failure., Recent Findings: Review of the qualitative literature on patient experience of end-stage heart failure since the year 2000, including 2012, suggests that treatment burden, the work that patients have to do to manage their condition, is a readily identifiable concept in advanced heart failure. Treatment burden relates to four main areas of work, namely: coherence (sense making work) which refers to the work of developing an understanding of the illness (including its implications), treatment and management; appraisal, which refers to the work of judging, monitoring and adjusting treatments; relationship work which describes the effort put into engaging with others for support; and enacting work, that is the effort put into operationalizing treatments, which includes activities such as taking medications, attending appointments, enduring side effects of treatments and dealing with communication difficulties., Summary: Treatment burden has the potential to be an important barometer of quality of care from the patient perspective in advanced heart failure.