Experiences of long-term life-limiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease?

Objectives: To summarise and synthesise published qualitative studies to characterise factors that shape patient and caregiver experiences of chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD) and chronic kidney disease (CKD).Design: Meta-review of qualitative systematic reviews and metasyntheses. Papers analysed using content analysis.Data sources: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science were searched from January 2000 to April 2015.Eligibility criteria for selecting studies: Systematic reviews and qualitative metasyntheses where the participants were patients, caregivers and which described experiences of care for CHF, COPD and CKD in primary and secondary care who were aged ?18?years.Results: Searches identified 5420 articles, 53 of which met inclusion criteria. Reviews showed that patients' and caregivers' help seeking and decision-making were shaped by their degree of structural advantage (socioeconomic status, spatial location, health service quality); their degree of interactional advantage (cognitive advantage, affective state and interaction quality) and their degree of structural resilience (adaptation to adversity, competence in managing care and caregiver response to demands).Conclusions: To the best of our knowledge, this is the first synthesis of qualitative systematic reviews in the field. An important outcome of this overview is an emphasis on what patients and caregivers value and on attributes of healthcare systems, relationships and practices that affect the distressing effects and consequences of pathophysiological deterioration in CHF, COPD and CKD. Interventions that seek to empower individual patients may have limited effectiveness for those who are most affected by the combined weight of structural, relational and practical disadvantage identified in this overview. We identify potential targets for interventions that could address these disadvantages.Systematic review registration number: PROSPERO CRD42014014547.<br/

Patient Work and Treatment Burden in Type 2 Diabetes: A Mixed-Methods Study.

OBJECTIVE: To use quantitative and qualitative methods to characterize the work patients with type 2 diabetes mellitus (T2DM) enact and explore the interactions between illness, treatment, and life. PATIENTS AND METHODS: In this mixed-methods, descriptive study, adult patients with T2DM seen at the outpatient diabetes clinic at Mayo Clinic in Rochester, Minnesota, from February 1, 2016, through March 31, 2017, were invited to participate. The study had 3 phases. In phase 1, the Patient Experience with Treatment and Self-management (PETS) scale was used to quantify treatment burden. In phase 2, a convenience sample of patients used a smartphone application to describe, in real time, time spent completing diabetes self-management tasks and to upload descriptive digital photographs. In phase 3, these data were explored in qualitative interviews that were analyed by 2 investigators using deductive analysis. RESULTS: Of 162 participants recruited, 160 returned the survey (phase 1); of the 50 participants who used the smartphone application (phase 2), we interviewed 17 (phase 3). The areas in which patients reported highest treatment burden were difficulty with negotiating health services (eg, coordinating medical appointments), medical expenses, and mental/physical exhaustion with self-care. Participants reported that medical appointments required about 2.5 hours per day, and completing administrative tasks related to health care required about 45 minutes. Time spent on health behaviors varied widely-from 2 to 60 minutes in a given 3-hour period. Patients' experience of a task's burden did not always correlate with the time spent on that task. CONCLUSION: The most burdensome tasks to patients with T2DM included negotiating health care services, affording medications, and completing administrative tasks even though they were not the most time-consuming activities. To be minimally disruptive, diabetes care should minimize the delegation of administrative tasks to patients

Self-management interventions for Type 2 Diabetes: systematic review protocol focusing on patient workload and capacity support

Introduction: People living with type 2 diabetes undertake a range of tasks to manage their condition, collectively referred to as self-management. Interventions designed to support self-management vary in their content, and efficacy. This systematic review will analyse self-management interventions for type 2 diabetes drawing on theoretical models of patient workload and capacity. Methods and analysis: Five electronic databases (Medline, Embase, CENTRAL, CINAHL and PsycINFO) will be searched from inception to 27th April 2021, supplemented by citation searching and hand-searching of reference lists. Two reviewers will independently review titles, abstracts and full texts. Inclusion criteria include Population: Adults with type 2 diabetes mellitus; Intervention: Randomised controlled trials of self-management support interventions; Comparison: Usual care; Outcomes: HbA1c (primary outcome) health-related quality of life (QOL), medication adherence, self-efficacy, treatment burden, healthcare utilization (e.g. number of appointment, hospital admissions), complications of type 2 diabetes (e.g. nephropathy, retinopathy, neuropathy, macrovascular disease) and mortality; Setting: Community. Study quality will be assessed using the Effective Practice and Organisation of Care (EPOC) risk of bias tool. Interventions will be classified according to the EPOC taxonomy and the PRISMS self-management taxonomy and grouped into similar interventions for analysis. Clinical and methodological heterogeneity will be assessed within subgroups, and random effects meta-analyses performed if appropriate. Otherwise, a narrative synthesis will be performed. Interventions will be graded on their likely impact on patient workload and support for patient capacity. The impact of these theoretical constructs on study outcomes will be explored using meta-regression. Conclusion This review will provide a broad overview of self-management interventions, analysed within the cumulative complexity model theoretical framework. Analyses will explore how the workload associated with self-management, and support for patient capacity, impact on outcomes of self-management interventions. Registration number: PROSPERO CRD42021236980

Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis.

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

Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness

&lt;b&gt;Background&lt;/b&gt; 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.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Discussion&lt;/b&gt; 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.&lt;p&gt;&lt;/p&gt; &lt;b&gt;Summary&lt;/b&gt; 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

A systematic review of shared decision making interventions in chronic conditions: a review protocol

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

The impact of decision aids to enhance shared decision making for diabetes (the DAD study): protocol of a cluster randomized trial

Background. Shared decision making contributes to high quality healthcare by promoting a patientcentered approach. Patient involvement in selecting the components of a diabetes medication program that best match the patient's values and preferences may also enhance medication adherence and improve outcomes. Decision aids are tools designed to involve patients in shared decision making, but their adoption in practice has been limited. In this study, we propose to obtain a preliminary estimate of the impact of patient decision aids vs. usual care on measures of patient involvement in decision making, diabetes care processes, medication adherence, glycemic and cardiovascular risk factor control, and resource utilization. In addition, we propose to identify, describe, and explain factors that promote or inhibit the routine embedding of decision aids in practice. Methods. We will be conducting a mixed-methods study comprised of a cluster-randomized, practical, multicentered trial enrolling clinicians and their patients (n = 240) with type 2 diabetes from rural and suburban primary care practices (n = 8), with an embedded qualitative study to examine factors that influence the incorporation of decision aids into routine practice. The intervention will consist of the use of a decision aid (Statin Choice and Aspirin Choice, or Diabetes Medication Choice) during the clinical encounter. The qualitative study will include analysis of video recordings of clinical encounters and in-depth, semi-structured interviews with participating patients, clinicians, and clinic support staff, in both trial arms. Discussion. Upon completion of this trial, we will have new knowledge about the effectiveness of diabetes decision aids in these practices. We will also better understand the factors that promote or inhibit the successful implementation and normalization of medication choice decision aids in the care of chronic patients in primary care practices

Patient capacity for self-care in the medical record of patients with chronic conditions: a mixed-methods retrospective study

Abstract 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

Developing LHS scholars’ competency around reducing burnout and moral injury

Abstract 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