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INTRODUCTION: Adverse events in health care affect 8% to 12% of patients admitted to hospitals in the European Union (EU), with surgical adverse events being the most common types reported. AIM: SAFEST project aims to enhance perioperative care quality and patient safety by establishing and implementing widely supported evidence-based perioperative patient safety practices to reduce surgical adverse events. METHODS: We will conduct a mixed-methods hybrid type III implementation study supporting the development and adoption of evidence-based practices through a Quality Improvement Learning Collaborative (QILC) in co-creation with stakeholders. The project will be conducted in 10 hospitals and related healthcare facilities of 5 European countries. We will assess the level of adherence to the standardised practices, as well as surgical complications incidence, patient-reported outcomes, contextual factors influencing the implementation of the patient safety practices, and sustainability. The project will consist of six components: 1) Development of patient safety standardised practices in perioperative care; 2) Guided self-evaluation of the standardised practices; 3) Identification of priorities and actions plans; 4) Implementation of a QILC strategy; 5) Evaluation of the strategy effectiveness; 6) Patient empowerment for patient safety. Sustainability of the project will be ensured by systematic assessment of sustainability factors and business plans. Towards the end of the project, a call for participation will be launched to allow other hospitals to conduct the self-evaluation of the standardized practices. DISCUSSION: The SAFEST project will promote patient safety standardized practices in the continuum of care for adult patients undergoing surgery. This project will result in a broad implementation of evidence-based practices for perioperative care, spanning from the care provided before hospital admission to post-operative recovery at home or outpatient facilities. Different implementation challenges will be faced in the application of the evidence-based practices, which will be mitigated by developing context-specific implementation strategies. Results will be disseminated in peer-reviewed publications and will be available in an online platform.
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Patient Safety , Perioperative Care , Quality Improvement , Humans , Perioperative Care/standards , Patient Safety/standards , Postoperative Complications/prevention & control , Postoperative Complications/epidemiology , EuropeABSTRACT
BACKGROUND: The PaRIS survey, an initiative of the Organisation for Economic Co-operation and Development (OECD), aims to assess health systems performance in delivering primary care by measuring the care experiences and outcomes of people over 45 who used primary care services in the past six months. In addition, linked data from primary care practices are collected to analyse how the organisation of primary care practices and their care processes impact care experiences and outcomes. This article describes the development and validation of the primary care practice questionnaire for the PaRIS survey, the PaRIS-PCPQ. METHOD: The PaRIS-PCPQ was developed based on domains of primary care practice and professional characteristics included in the PaRIS conceptual framework. Questionnaire development was conducted in four phases: (1) a multi-step consensus-based development of the source questionnaire, (2) translation of the English source questionnaire into 17 languages, (3) cross-national cognitive testing with primary care professionals in participating countries, and (4) cross-national field-testing. RESULTS: 70 items were selected from 7 existing questionnaires on primary care characteristics, of which 49 were included in a first draft. Feedback from stakeholders resulted in a modified 34-item version (practice profile, care coordination, chronic care management, patient follow-up, and respondent characteristics) designed to be completed online by medical or non-medical staff working in a primary care practice. Cognitive testing led to changes in the source questionnaire as well as to country specific localisations. The resulting 32-item questionnaire was piloted in an online survey and field test. Data from 540 primary care practices from 17 countries were collected and analysed. Final revision resulted in a 34-item questionnaire. CONCLUSIONS: The cross-national development of a primary care practice questionnaire is challenging due to the differences in care delivery systems. Rigorous translation and cognitive testing as well as stakeholder engagement helped to overcome most challenges. The PaRIS-PCPQ will be used to assess how key characteristics of primary care practices relate to the care experiences and outcomes of people living with chronic conditions. As such, policymakers and care providers will be informed about the performance of primary care from the patient's perspective.
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Primary Health Care , Humans , Surveys and Questionnaires , Cross-Cultural Comparison , Reproducibility of Results , Female , Health Care Surveys , Middle AgedABSTRACT
Self-management interventions (SMIs) may improve disease management in adults living with obesity. We formulated evidence-based recommendations for SMIs within the context of the COMPAR-EU project. The multidisciplinary panel selected critical outcomes based on the COMPAR-EU core outcome set and established decision thresholds for each outcome. Recommendations were informed by systematic reviews of effects, cost-effectiveness, and a contextual assessment. To assess the certainty of the evidence and formulate the recommendations, we used the GRADE approach guidance. Overall, SMIs were deemed to have a small impact, but the absence of harmful effects and potential cumulative benefits indicated a favourable balance of effects, despite low certainty. SMIs showed variations in structure, intensity, and resource utilisation, but overall are likely to be cost-effective. Adapting SMIs to local contexts would enhance equity, acceptability, and feasibility, considering patients' values, and availability of resources and teamwork. Consequently, the panel made conditional recommendations favouring SMIs over usual care. The rigorous and explicit recommendations demonstrated the effectiveness of SMIs for adults living with obesity. However, the gaps in the literature influenced the panel to make only conditional recommendations in favour of SMIs. Further research is needed to strengthen the evidence base and improve recommendations' certainty and applicability.
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Obesity , Self-Management , Humans , Obesity/therapy , Self-Management/methods , Adult , Cost-Benefit Analysis , Evidence-Based MedicineABSTRACT
BACKGROUND & AIMS: Acinar-to-ductal metaplasia (ADM) is crucial in the development of pancreatic ductal adenocarcinoma. However, our understanding of the induction and resolution of ADM remains limited. We conducted comparative transcriptome analyses to identify conserved mechanisms of ADM in mouse and human. METHODS: We identified Sox4 among the top up-regulated genes. We validated the analysis by RNA in situ hybridization. We performed experiments in mice with acinar-specific deletion of Sox4 (Ptf1a: CreER; Rosa26-LSL-YFPLSL-YFP; Sox4fl/fl) with and without an activating mutation in Kras (KrasLSL-G12D/+). Mice were given caerulein to induce pancreatitis. We performed phenotypic analysis by immunohistochemistry, tissue decellularization, and single-cell RNA sequencing. RESULTS: We demonstrated that Sox4 is reactivated in ADM and pancreatic intraepithelial neoplasias. Contrary to findings in other tissues, Sox4 actually counteracts cellular dedifferentiation and helps maintain tissue homeostasis. Moreover, our investigations unveiled the indispensable role of Sox4 in the specification of mucin-producing cells and tuft-like cells from acinar cells. We identified Sox4-dependent non-cell-autonomous mechanisms regulating the stromal reaction during disease progression. Notably, Sox4-inferred targets are activated upon KRAS inactivation and tumor regression. CONCLUSIONS: Our results indicate that our transcriptome analysis can be used to investigate conserved mechanisms of tissue injury. We demonstrate that Sox4 restrains acinar dedifferentiation and is necessary for the specification of acinar-derived metaplastic cells in pancreatic injury and cancer initiation and is activated upon Kras ablation and tumor regression in mice. By uncovering novel potential strategies to promote tissue homeostasis, our findings offer new avenues for preventing the development of pancreatic ductal adenocarcinoma.
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INTRODUCTION: Medical deserts are a growing phenomenon across many European countries. They are usually defined as (i) rural areas, (ii) underserved areas or (iii) by applying a measure of distance/time to a facility or a combination of the three characteristics. The objective was to define medical deserts in Spain as well as map their driving factors and approaches to mitigate them. METHODS: A mixed methods approach was applied following the project "A Roadmap out of medical deserts into supportive health workforce initiatives and policies" work plan. It included the following elements: (i) a scoping literature review; (ii) a questionnaire survey; (iii) national stakeholders' workshop; (iv) a descriptive case study on medical deserts in Spain. RESULTS: Medical deserts in Spain exist in the form of mostly rural areas with limited access to health care. The main challenge in their identification and monitoring is local data availability. Diversity of both factors contributing to medical deserts and solutions applied to eliminate or mitigate them can be identified in Spain. They can be related to demand for or supply of health care services. More national data, analyses and/or initiatives seem to be focused on the health care supply dimension. CONCLUSIONS: Addressing medical deserts in Spain requires a comprehensive and multidimensional approach. Effective policies are needed to address both the medical staff education and planning system, working conditions, as well as more intersectoral approach to the population health management.
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Health Services Accessibility , Medically Underserved Area , Spain , Humans , Surveys and Questionnaires , Rural Health Services/organization & administrationABSTRACT
Self-management interventions (SMIs) offer a promising approach to actively engage patients in the management of their chronic diseases. Within the scope of the COMPAR-EU project, our goal is to provide evidence-based recommendations for the utilisation and implementation of SMIs in the care of adult individuals with type 2 diabetes mellitus (T2DM). A multidisciplinary panel of experts, utilising a core outcome set (COS), identified critical outcomes and established effect thresholds for each outcome. The panel formulated recommendations using the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) approach, a transparent and rigorous framework for developing and presenting the best available evidence for the formulation of recommendations. All recommendations are based on systematic reviews (SR) of the effects and of values and preferences, a contextual analysis, and a cost-effectiveness analysis. The COMPAR-EU panel is in favour of using SMIs rather than usual care (UC) alone (conditional, very low certainty of the evidence). Furthermore, the panel specifically is in favour of using ten selected SMIs, rather than UC alone (conditional, low certainty of the evidence), mostly encompassing education, self-monitoring, and behavioural techniques. The panel acknowledges that, for most SMIs, moderate resource requirements exist, and cost-effectiveness analyses do not distinctly favour either the SMI or UC. Additionally, it recognises that SMIs are likely to enhance equity, deeming them acceptable and feasible for implementation.
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Self-management interventions (SMIs) may enhance heart failure (HF) outcomes and address challenges associated with disease management. This study aims to review randomized evidence and identify knowledge gaps in SMIs for adult HF patients. Within the COMPAR-EU project, from 2010 to 2018, we conducted searches in the databases MEDLINE, CINAHL, Embase, Cochrane, and PsycINFO. We performed a descriptive analysis using predefined categories and developed an evidence map of randomized controlled trials (RCTs). We found 282 RCTs examining SMIs for HF patients, comparing two to four interventions, primarily targeting individual patients (97%) globally (34 countries, only 31% from an European country). These interventions involved support techniques such as information sharing (95%) and self-monitoring (62%), often through a mix of in-person and remote sessions (43%). Commonly assessed outcomes included quality of life, hospital admissions, mortality, exercise capacity, and self-efficacy. Few studies have focused on lower socio-economic or minority groups. Nurses (68%) and physicians (30%) were the primary providers, and most studies were at low risk of bias in generating a random sequence for participant allocation; however, the reporting was noticeably unclear of methods used to conceal the allocation process. Our analysis has revealed prevalent support techniques and delivery methods while highlighting methodological challenges. These findings provide valuable insights for researchers, clinicians, and policymakers striving to optimize SMIs for individuals living with HF.
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OBJECTIVES: To identify and describe the most relevant contextual factors (CFs) from the literature that influence the successful implementation of self-management interventions (SMIs) for patients living with type 2 diabetes mellitus, obesity, COPD and/or heart failure. METHODS: We conducted a qualitative review of reviews. Four databases were searched, 929 reviews were identified, 460 screened and 61 reviews met the inclusion criteria. CFs in this paper are categorized according to the Tailored Implementation for Chronic Diseases framework. RESULTS: A great variety of CFs was identified on several levels, across all four chronic diseases. Most CFs were on the level of the patient, the professional and the interaction level, while less CFs were obtained on the level of the intervention, organization, setting and national level. No differences in main themes of CFs across all four diseases were found. DISCUSSION: For the successful implementation of SMIs, it is crucial to take CFs on several levels into account simultaneously. Person-centered care, by tailoring SMIs to patients' needs and circumstances, may increase the successful uptake, application and implementation of SMIs in real-life practice. The next step will be to identify the most important CFs according to various stakeholders through a group consensus process.
Subject(s)
Diabetes Mellitus, Type 2 , Heart Failure , Self-Management , Humans , Diabetes Mellitus, Type 2/therapy , Chronic Disease , Heart Failure/therapyABSTRACT
Self-management interventions (SMIs) may be promising in the treatment of Diabetes Mellitus Type 2 (T2DM). However, accurate comparisons of their relative effectiveness are challenging, partly due to a lack of clarity and detail regarding the intervention content being evaluated. This study summarizes intervention components and characteristics in randomized controlled trials (RCTs) related to T2DM using a taxonomy for SMIs as a framework and identifies components that are insufficiently incorporated into the design of the intervention or insufficiently reported. Following evidence mapping methodology, we searched MEDLINE, CINAHL, Embase, Cochrane, and PsycINFO from 2010 to 2018 for randomized controlled trials (RCTs) on SMIs for T2DM. We used the terms 'self-management', 'adult' and 'T2DM' for content. For data extraction, we used an online platform based on the taxonomy for SMIs. Two independent reviewers assessed eligible references; one reviewer extracted data, and a second checked accuracy. We identified 665 RCTs for SMIs (34% US, 21% Europe) including 164,437 (median 123, range 10-14,559) adults with T2DM. SMIs highly differed in design and content, and characteristics such as mode of delivery, intensity, location and providers involved were poorly described. The majority of interventions aimed to improve clinical outcomes like HbA1c (83%), weight (53%), lipid profile (45%) or blood pressure (42%); 27% (also) targeted quality of life. Improved knowledge, health literacy, patient activation or satisfaction with care were hardly used as outcomes (<16%). SMIs most often used education (98%), self-monitoring (56%), goal-setting (48%) and skills training (42%) to improve outcomes. Management of emotions (17%) and shared decision-making (5%) were almost never mentioned. Although diabetes is highly prevalent in some minority groups, in only 13% of the SMIs, these groups were included. Our findings highlight the large heterogeneity that exists in the design of SMIs for T2DM and the way studies are reported, making accurate comparisons of their relative effectiveness challenging. In addition, SMIs pay limited attention to outcomes other than clinical, despite the importance attached to these outcomes by patients. More standardized and streamlined research is needed to better understand the effectiveness and cost-effectiveness of SMIs of T2DM and benefit patient care.
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This study, as part of the COMPAR-EU project, utilized a mixed-methods approach involving 37 individual, semi-structured interviews and one focus group with 7 participants to investigate the factors influencing the implementation and use of self-management interventions (SMIs) decision tools in clinical practice. The interviews and focus group discussions were guided by a tailored interview and focus group guideline developed based on the Tailored Implementation for Chronic Diseases (TICD) framework. The data were analyzed using a directed qualitative content analysis, with a deductive coding system based on the TICD framework and an inductive coding process. A rapid analysis technique was employed to summarize and synthesize the findings. The study identified five main dimensions and facilitators for implementation: decision tool factors, individual health professional factors, interaction factors, organizational factors, and social, political, and legal factors. The findings highlight the importance of structured implementation through SMI decision support tools, emphasizing the need to understand their benefits, secure organizational resources, and gain political support for sustainable implementation. Overall, this study employed a systematic approach, combining qualitative methods and comprehensive analysis, to gain insights into the factors influencing the implementation of SMIs' decision-support tools in clinical practice.
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BACKGROUND: Self-management interventions (SMIs) are core components of high-quality care in type 2 diabetes mellitus (T2DM). We aimed to identify and summarise the scientific evidence exploring the perspectives of patients with T2DM and their informal caregivers on outcomes of SMIs, and the key themes to enhance T2DM patient-centred care. METHODS: We conducted a mixed-methods overview of reviews. We searched MEDLINE, CINAHL and PsycINFO, up to June 2021 for systematic reviews (SRs) exploring the perspectives of adults with T2DM and their informal caregivers, regarding self-management. Two reviewers conducted independently study selection, data extraction and quality assessment. We estimated the degree of overlap across SRs. We performed a qualitative analysis using a thematic synthesis approach. RESULTS: We identified 54 SRs, corresponding to 939 studies, with a slight overlap. Most SRs (47/54, 87%) were considered high quality. We developed summaries for 22 outcomes and identified six overarching themes: (1) diabetic identity; (2) accessing healthcare; (3) experience of care; (4) engagement with self-management; (5) outcomes awareness; and (6) challenges adhering to self-management. We found important variability in how patients with T2DM and their informal caregivers value critical outcomes influenced by the disease progression and several contextual factors. CONCLUSIONS: Our findings represent what matters most to patients with T2DM and their informal caregivers regarding outcomes of SMIs. Our results can facilitate the development and evaluation of SMIs, and guide decision-making in diabetes care, including the formulation of decisions and recommendations.
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OBJECTIVE: To reach consensus amongst stakeholders about the most important contextual factors (CFs) that may influence the successful implementation of (components of) self-management interventions (SMIs) for type 2 diabetes, obesity, COPD and heart failure. METHODS: Building on our literature review that identified 31 CFs on different levels we conducted a Delphi with 44 stakeholders to identify which of these CFs, or additional ones, contribute most to successful implementation of SMIs. The Delphi consisted of three rounds in which the CFs were scored, prioritized and discussed. RESULTS: The most important CFs overlapped to a great extent across components of SMIs and diseases. Overall, stakeholders identified 'HCP's ability to adapt the advice, communication or intervention to patients' situation and level of knowledge' as most important CF. CONCLUSION: CFs need to be taken into account when implementing promising SMIs. According to stakeholders, the most important CFs are patient-, HCP- or interaction related. 'Tailoring' was selected as the most crucial aspect for HCPs. PRACTICE IMPLICATIONS: Stakeholders can make informed decisions on the adoption of the most suitable SMIs in a given context. These CFs are available through a self-management platform. Suggestions to implement self-management behaviour and to close the research-to-practice gap are made.
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Diabetes Mellitus, Type 2 , Self-Management , Humans , Delphi Technique , Diabetes Mellitus, Type 2/therapy , CommunicationABSTRACT
INTRODUCTION: Medical deserts are increasingly considered problematic and many countries employ a multitude of actions and initiatives to achieve a better distribution of the health workforce (HWF). This study systematically maps research and provides an overview of the definitions/characteristics of medical deserts. It also identifies contributing factors and approaches to mitigate medical deserts. METHODS: Embase, MEDLINE, CINAHL, Web of Science Core Collection, Google Scholar and The Cochrane Library were searched from inception to May 2021. Studies reporting primary research on definitions, characteristics, contributing factors and approaches to mitigate medical deserts were included. Two independent reviewers assessed studies for eligibility, extracted data and clustered studies. RESULTS: Two-hundred and forty studies were included (49% Australia/New Zealand, 43% North America, 8% Europe). All used observational designs except for five quasi-experimental studies. Studies provided definitions (n=160), characteristics (n=71), contributing/associated factors (n=113), and approaches to mitigate medical deserts (n=94). Most medical deserts were defined by the density of the population in an area. Contributing/associated factors consisted in sociodemographic/characteristics of HWF (n=70), work-related factors (n=43) and lifestyle conditions (n=34). Approaches focused on training adapted to the scope of rural practice (n=79), HWF distribution (n=3), support and infrastructure (n=6) and innovative models of care (n=7). DISCUSSION: Our study provides the first scoping review on definitions, characteristics, contributing/associated factors and approaches to mitigate medical deserts. We identified gaps such as the scarcity of longitudinal studies to investigate factors contributing to medical deserts, and interventional studies to evaluate the effectiveness of approaches to mitigate medical deserts.
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Life Style , Rural Population , Humans , Australia , New ZealandABSTRACT
OBJECTIVES: To conduct an evidence map on self-management interventions and patient-relevant outcomes for adults living with overweight/obesity. METHODS: Following Arksey and O'Malley methodology, we searched in five electronical databases including randomized controlled trials (RCTs) on SMIs for overweight/obesity. We used the terms "self-management", "adult" and "obesity" for content. Two independent reviewers assessed eligible references; one reviewer extracted data, a second checked accuracy. RESULTS: We identified 497 RCTs (58% US, 20% Europe) including 99,741 (median 112, range 11-5145) adults living with overweight/obesity. Most research evaluated clinical outcomes (617, 55%) and behaviors adherence (255, 23%). Empowerment skills, quality of life and satisfaction were less targeted (8%, 7%, 0.2%, respectively). The most frequent techniques included sharing information (858, 99%), goal setting (619, 72%) and self-monitoring training (614, 71%), provided face-to-face (386, 45%) or in combination with remote techniques (256, 30%). Emotional management, social support and shared-decision were less frequent (18%, 26%, 4%). Socio-economic status, minorities or health literacy were seldom reported. CONCLUSION: There is a need of widening the scope of research by focusing on outcomes important to patients, assessing emotional/social/share-decision support, exploring remote techniques and including vulnerable populations.
Subject(s)
Health Literacy , Self-Management , Humans , Overweight , Obesity/therapy , Treatment OutcomeABSTRACT
BACKGROUND: Medical deserts are considered a problematic issue for many Western countries which try to employ multitude of policies and initiatives to achieve a better distribution of their health workforce (HWF). The aim of this study was to systematically map research and provide an overview of definitions, characteristics, contributing factors and approaches to mitigate medical deserts within the European Union (EU)-funded project "ROUTE-HWF" (a Roadmap OUT of mEdical deserts into supportive Health WorkForce initiatives and policies). METHODS: We performed a scoping review to identify knowledge clusters/research gaps in the field of medical deserts focusing on HWF issues. Six databases were searched till June 2021. Studies reporting primary research from Western countries on definitions, characteristics, contributing factors, and approaches were included. Two independent reviewers assessed studies for eligibility, extracted data and clustered studies according to the four defined outcomes. RESULTS: Two-hundred and forty studies were included (n=116, 48% Australia/New Zealand; n=105, 44% North America; n=20, 8% Europe). All used observational designs except for five quasi-experimental studies. Studies provided definitions (n=171, 71%), characteristics (n=95, 40%), contributing factors (n=112, 47%), and approaches to mitigate medical deserts (n=87, 36%). Most medical deserts were defined by the density of the population in an area. Contributing factors to HWF issues in medical deserts consisted in work-related (n=55, 23%) and lifestyle-related factors (n=33, 14%) of the HWF as well as sociodemographic characteristics (n=79, 33%). Approaches to mitigate them focused on training adapted to the scope of rural practice (n=67, 28%), HWF distribution (n=3, 1%), support/infrastructure (n=8, 3%) and innovative models of care (n=7, 3%). CONCLUSION: Our study provides the first scoping review that presents and categorizes definitions, characteristics, contributing factors, and approaches to mitigate HWF issues in medical deserts. We identified gaps such as the scarcity of longitudinal studies to investigate the impact of factors contributing to medical deserts, and interventional studies to evaluate the effectiveness of approaches to mitigate HWF issues.
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Health Workforce , Humans , Empirical Research , Australia , Databases, Factual , EuropeABSTRACT
BACKGROUND: Chronic diseases are a leading cause of global morbidity and mortality. In response to this challenge, self-management interventions (SMIs) have emerged as an essential tool in improving patient outcomes. However, the diverse and complex nature of SMIs pose significant challenges in measuring their effectiveness. This work aims to investigate the comparative effectiveness of SMIs on Type 2 diabetes mellitus (T2DM) outcomes. METHODS: A rigorous analytical framework was employed to assess the relative effectiveness of different SMIs, encompassing both pairwise and network meta-analysis (NMA), as well as component network meta-analysis (CNMA). Various outcomes were considered, including glycated hemoglobin (HbA1c) control, body mass index (BMI) reduction and low-density lipoprotein (LDL) cholesterol. Visualization tools were also utilized to enhance the interpretation of results. RESULTS: SMIs were found promising in improving clinical outcomes and patient-reported measures. However, considerable heterogeneity and inconsistency across studies challenged the validity of NMA results. CNMA along with various visualization tools offered insights into the contributions of individual SMI components, highlighting the complexity of these interventions. DISCUSSION/CONCLUSIONS: SMIs represent a valuable approach to managing chronic conditions, but their effectiveness is context-dependent. Further research is needed to elucidate the contextual factors influencing SMI outcomes. This work contributes to a comprehensive understanding of SMIs' role in T2DM management, aiming to aid decision-makers, clinicians, and patients in selecting tailored interventions.
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Self-management interventions (SMIs) may improve outcomes in Chronic Obstructive Pulmonary Disease (COPD). However, accurate comparisons of their relative effectiveness are challenging, partly due to a lack of clarity and detail regarding the intervention content being evaluated. This study systematically describes intervention components and characteristics in randomized controlled trials (RCTs) related to COPD self-management using the COMPAR-EU taxonomy as a framework, identifying components that are insufficiently incorporated into the design of the intervention or insufficiently reported. Overall, 235 RCTs published between 2010 and 2018, from a systematic review were coded using the taxonomy, which includes 132 components across four domains: intervention characteristics, expected patient (or caregiver) self-management behaviours, patient relevant outcomes, and target population characteristics. Risk of bias was also assessed. Interventions mainly focused on physical activity (67.4%), and condition-specific behaviours like breathing exercise (63.5%), self-monitoring (50.8%), and medication use (33.9%). Support techniques like education and skills-training, self-monitoring, and goal setting (over 35% of the RCTs) were mostly used for this. Emotional-based techniques, problem-solving, and shared decision-making were less frequently reported (less than 15% of the studies). Numerous SMIs components were insufficiently incorporated into the design of COPD SMIs or insufficiently reported. Characteristics like mode of delivery, intensity, location, and providers involved were often not described. Only 8% of the interventions were tailored to the target population's characteristics. Outcomes that are considered important by patients were hardly taken into account. There is still a lot to improve in both the design and description of SMIs for COPD. Using a framework such as the COMPAR-EU SMI taxonomy may contribute to better reporting and to better informing of replication efforts. In addition, prospective use of the taxonomy for developing and reporting intervention content would further aid in building a cumulative science of effective SMIs in COPD.
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Pulmonary Disease, Chronic Obstructive , Self-Management , Exercise , Humans , Pulmonary Disease, Chronic Obstructive/therapy , Quality of Life , Randomized Controlled Trials as TopicABSTRACT
INTRODUCTION: In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey. METHODS AND ANALYSIS: As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023. ETHICS AND DISSEMINATION: Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world.
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Organisation for Economic Co-Operation and Development , Policy , Chronic Disease , Humans , Surveys and QuestionnairesABSTRACT
Background: For many chronically ill patients self-management of their disease is difficult. This may be especially true for people with limited health literacy as they are faced with additional challenges in the day-to-day management of their disease. Research has shown that self-management support is most effective when tailored to the needs and preferences of patients. Therefore, this study explores the preferences regarding self-management outcomes of chronically ill patients with limited health literacy. Methods: A total of 35 patients with limited health literacy were invited to a concept-mapping procedure consisting of two card sorting tasks. Patients ranked 60 outcomes, which are often found in literature in relation to self-management, to the level that was important for themselves. Means were calculated for each outcome and domain, and differences within the group were analyzed. Results: For patients with limited health literacy, satisfaction with care is the most important outcome domain. This domain includes overall satisfaction, the communication with health care providers, the provision of information and trust. At an outcome level, outcomes related to symptom management and improving competences to self-management scored very high. No differences between patient groups for age and sex were found. Conclusion: Chronically ill patients with limited health literacy prefer a wide variety of outcomes for their self-management. Next to health related outcomes, patients mostly prefer to work on their competences for self-management. For health care professionals, acting on these patient preferences and building a solid relationship will enhance successful self-management.
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Health Literacy , Self-Management , Chronic Disease , Ethnicity , Health Personnel , HumansABSTRACT
Rationale: Some patients with chronic obstructive pulmonary disease (COPD) suffer accelerated lung function (forced expiratory volume in 1 second [FEV1]) decline over time. Objectives: To investigate the relationship between chronic bronchial infection (CBI) and, in particular, the isolation of Pseudomonas aeruginosa (PA), and FEV1 decline in COPD. Methods: Post-hoc analysis of a prospective cohort of 201 patients with COPD followed up every 3-6 months for 84 months. CBI was defined as ⩾3 sputum positive cultures of the same pathogenic micro-organism (PPM) over 1 year. Patients were stratified according to the presence of CBI by any PPM, as well by a single or multiple isolation of PA during follow-up. An adjusted mixed-effects linear regression model was used to investigate the independent effects of CBI and PA isolation on FEV1 decline over time. Results: During follow-up, PPMs were never isolated in 43.3% of patients, in 23.9% of them PPMs were isolated once, and CBI by any PPM was confirmed in 32.8% of participants. FEV1 decline in the entire cohort was 33.7 (95% confidence interval [CI], 21.4-46.1) ml/year. This was significantly increased in patients with CBI by any PPM (57.1 [95% CI, 28.5-79.3] ml/year) and in those in whom PA was isolated at least once (48.5 [95% CI, 27.3-88.2] ml/year). Multivariable analysis showed that the presence of both CBI by any PPM, and at least one PA isolation, were independent factors associated with faster FEV1 decline adjusted by baseline FEV1, presence of bronchiectasis, body mass index, age, exacerbations, smoking status, symptoms, baseline treatment, and comorbidities. Conclusions: The presence of CBI by any PPM, and one or more PA isolation, were independently associated with FEV1 decline in patients with COPD.