Abstract: Background: Chronic obstructive pulmonary disease (COPD) and asthma have a high prevalence and disease burden. Blended self-management interventions, which combine eHealth with face-to-face interventions, can help reduce the disease burden. Objective: This systematic review and meta-analysis aims to examine the effectiveness of blended self-management interventions on health-related effectiveness and process outcomes for people with COPD or asthma. Methods: PubMed, Web of Science, COCHRANE Library, Emcare, and Embase were searched in December 2018 and updated in November 2020. Study quality was assessed using the Cochrane risk of bias (ROB) 2 tool and the Grading of Recommendations, Assessment, Development, and Evaluation. Results: A total of 15 COPD and 7 asthma randomized controlled trials were included in this study. The meta-analysis of COPD studies found that the blended intervention showed a small improvement in exercise capacity (standardized mean difference [SMD] 0.48; 95% CI 0.10-0.85) and a significant improvement in the quality of life (QoL; SMD 0.81; 95% CI 0.11-1.51). Blended intervention also reduced the admission rate (relative ratio [RR] 0.61; 95% CI 0.38-0.97). In the COPD systematic review, regarding the exacerbation frequency, both studies found that the intervention reduced exacerbation frequency (RR 0.38; 95% CI 0.26-0.56). A large effect was found on BMI (d=0.81; 95% CI 0.25-1.34); however, the effect was inconclusive because only 1 study was included. Regarding medication adherence, 2 of 3 studies found a moderate effect (d=0.73; 95% CI 0.50-0.96), and 1 study reported a mixed effect. Regarding self-management ability, 1 study reported a large effect (d=1.15; 95% CI 0.66-1.62), and no effect was reported in that study. No effect was found on other process outcomes. The meta-analysis of asthma studies found that blended intervention had a small improvement in lung function (SMD 0.40; 95% CI 0.18-0.62) and QoL (SMD 0.36; 95% CI 0.21-0.50) and a moderate improvement in asthma control (SMD 0.67; 95% CI 0.40-0.93). A large effect was found on BMI (d=1.42; 95% CI 0.28-2.42) and exercise capacity (d=1.50; 95% CI 0.35-2.50); however, 1 study was included per outcome. There was no effect on other outcomes. Furthermore, the majority of the 22 studies showed some concerns about the ROB, and the quality of evidence varied. Conclusions: In patients with COPD, the blended self-management interventions had mixed effects on health-related outcomes, with the strongest evidence found for exercise capacity, QoL, and admission rate. Furthermore, the review suggested that the interventions resulted in small effects on lung function and QoL and a moderate effect on asthma control in patients with asthma. There is some evidence for the effectiveness of blended self-management interventions for patients with COPD and asthma; however, more research is needed. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42019119894; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=119894
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Background: Burden of disease estimates are an important resource in public health. Currently, robust estimates are not available for the burn population. Our objectives are to adapt a refined methodology (INTEGRIS method) to burns and to apply this new INTEGRIS-burns method to estimate, and compare, the burden of disease of burn injuries in Australia, New Zealand and the Netherlands. Methods: Existing European and Western-Australian health-related quality of life (HRQL) datasets were combined to derive disability weights for three homogenous burn injury groups based on percentage total body surface area (%TBSA) burned. Subsequently, incidence data from Australia, New Zealand, and the Netherlands from 2010 to 2017 were used to compute annual non-fatal burden of disease estimates for each of these three countries. Non-fatal burden of disease was measured by years lived with disability (YLD). Results: The combined dataset included 7159 HRQL (EQ-5D-3 L) outcomes from 3401 patients. Disability weights ranged from 0.046 (subgroup <5% TBSA burned > 24 months post-burn) to 0.497 (subgroup > 20% TBSA burned 0-1 months post-burn). In 2017 the non-fatal burden of disease of burns for the three countries (YLDs/100,000 inhabitants) was 281 for Australia, 279 for New Zealand and 133 for the Netherlands. Conclusions: This project established a method for more precise estimates of the YLDs of burns, as it is the only method adapted to the nature of burn injuries and their recovery. Compared to previous used methods, the INTEGRIS-burns method includes improved disability weights based on severity categorization of burn patients; a better substantiated proportion of patients with lifelong disability based; and, the application of burn specific recovery timeframes. Information derived from the adapted method can be used as input for health decision making at both the national and international level. Future studies should investigate whether the application is valid in low- and middle- income countries.
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Chronic diseases represent a significant burden for the society and health systems; addressing this burden is a key goal of the European Union policy. Health and other professionals are expected to deliver behaviour change support to persons with chronic disease. A skill gap in behaviour change support has been identified, and there is room for improvement. Train4Health is a strategic partnership involving seven European Institutions in five countries, which seeks to improve behaviour change support competencies for the self-management of chronic disease. The project envisages a continuum in behaviour change support education, in which an interprofessional competency framework, relevant for those currently practising, guides the development of a learning outcomes-based curriculum and an educational package for future professionals (today’s undergraduate students).
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Purpose To empirically define the concept of burden of neck pain. The lack of a clear understanding of this construct from the perspective of persons with neck pain and care providers hampers adequate measurement of this burden. An additional aim was to compare the conceptual model obtained with the frequently used Neck Disability Index (NDI). Methods Concept mapping, combining qualitative (nominal group technique and group consensus) and quantitative research methods (cluster analysis and multidimensional scaling), was applied to groups of persons with neck pain (n = 3) and professionals treating persons with neck pain (n = 2). Group members generated statements, which were organized into concept maps. Group members achieved consensus about the number and description of domains and the researchers then generated an overall mind map covering the full breadth of the burden of neck pain. Results Concept mapping revealed 12 domains of burden of neck pain: impaired mobility neck, neck pain, fatigue/concentration, physical complaints, psychological aspects/consequences, activities of daily living, social participation, financial consequences, difficult to treat/difficult to diagnose, difference of opinion with care providers, incomprehension by social environment, and how person with neck pain deal with complaints. All ten items of the NDI could be linked to the mind map, but the NDI measures only part of the burden of neck pain. Conclusion This study revealed the relevant domains for the burden of neck pain from the viewpoints of persons with neck pain and their care providers. These results can guide the identification of existing measurements instruments for each domain or the development of new ones to measure the burden of neck pain.
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Abstract Aim: This study protocol aims to examine the effectiveness and preconditions of a self-management program—named REducing Delay through edUcation on eXacerbations (REDUX)—in China. Background: The high disease burden in people with chronic lung disease is mainly due to exacerbations. There is a need for effective exacerbation-management interventions. A nurse-led program, REDUX, helped patients self-manage exacerbations. Design: A single-arm pre-post study. Methods: Fifty-four patients and 24 healthcare professionals (HCPs) in Chinese primary care will be included. The core element of the program is a personalized action plan. HCPs will receive training in using the action plan to help patients manage exacerbations. The intervention will start when a patient is referred to the nurse for a post-exacerbation consultation and ends when the patient presents for the second post-exacerbation consultation. During the first post-exacerbation consultation, the patient and nurse will create the action plan. The primary outcomes in patients will include the delays between the onset of exacerbation and recognition, between exacerbation recognition and action, between exacerbation recognition and consultation with a doctor, and when the patients feel better after receiving medical help from HCPs. The secondary outcomes will include preconditions of the program. The ethics approval was obtained in September 2021. Discussion: This study will discuss a culturally adapted nurse-led self-management intervention for people with chronic lung disease in China. The intervention could help Chinese HCPs provide efficient care and reduce their workload. Furthermore, it will inform future research on tailoring nurse-led self-management interventions in different contexts. Impact: The study will contribute to the evidence on the effectiveness and preconditions of REDUX in China. If effective, the result will assist the nursing of people with chronic lung disease. Trial registration: Registered in the Chinese clinical trial registry (ID: 2100051782).
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Introduction: Besides dyspnoea and cough, patients with idiopathic pulmonary fibrosis (IPF) or sarcoidosis may experience distressing non-respiratory symptoms, such as fatigue or muscle weakness. However, whether and to what extent symptom burden differs between patients with IPF or sarcoidosis and individuals without respiratory disease remains currently unknown. Objectives: To study the respiratory and non-respiratory burden of multiple symptoms in patients with IPF or sarcoidosis and to compare the symptom burden with individuals without impaired spirometric values, FVC and FEV1 (controls). Methods: Demographics and symptoms were assessed in 59 patients with IPF, 60 patients with sarcoidosis and 118 controls (age ≥18 years). Patients with either condition were matched to controls by sex and age. Severity of 14 symptoms was assessed using a Visual Analogue Scale. Results: 44 patients with IPF (77.3% male; age 70.6±5.5 years) and 44 matched controls, and 45 patients with sarcoidosis (48.9% male; age 58.1±8.6 year) and 45 matched controls were analyzed. Patients with IPF scored higher on 11 symptoms compared to controls (p<0.05), with the largest differences for dyspnoea, cough, fatigue, muscle weakness and insomnia. Patients with sarcoidosis scored higher on all 14 symptoms (p<0.05), with the largest differences for dyspnoea, fatigue, cough, muscle weakness, insomnia, pain, itch, thirst, micturition (night, day). Conclusions: Generally, respiratory and non-respiratory symptom burden is significantly higher in patients with IPF or sarcoidosis compared to controls. This emphasizes the importance of awareness for respiratory and non-respiratory symptom burden in IPF or sarcoidosis and the need for additional research to study the underlying mechanisms and subsequent interventions.
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Background: In Europe, cardiovascular disease is one of the predominant causes of mortality and morbidity among older people over 65 years. The occurrence of cardiovascular disease can have a negative impact on the quality of life of older patients and their families and family health overall. Assuming that illness is a family affair shaped by culture and health care systems, we explored European health care practices and interventions toward families of older patients with cardiovascular disease and heart failure.Aims: This paper aimed to determine the extent, range, and variety of practices and interventions in Europe directed to families of older patients and to identify knowledge gaps.Materials & Methods: A scoping review was conducted including studies published in Medline, CINHAL, or Cochrane library between 2009 and mid-2020.Results: A total of 22 articles from 17 studies were included, showing diverse practices and interventions. The interventions targeted the family as a unit (six studies), dyads (five studies), patients alone, but assessed family members’ reactions (five studies) or the family member primarily, but assessed the reaction of the patient (one study). Target outcomes were family caregiver burden; health-related QoL; and perceived control in patients; and family functioning and changes in health behavior or knowledge in both, family members and patients. Most studies did not include an integral view of the family as the unit of care but rather had a disease-centered approach.Discussion: This scoping review provides insight into a variety of healthcarepractices towards families of older patients with cardiovascular disease in Europe. Clarifying underlying assumptions to involve families is needed. More studies with family-focused approaches as integral models could lead to practices that improve families’ well-being. Exploring integral models for their acceptance in health care and family systems appears pertinent to develop European policy to support and add to family health.
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This open access book is a valuable resource for students in health and other professions and practicing professionals interested in supporting effective change in self-management behaviors in chronic disease, such as medication taking, physical activity and healthy eating. Developed under the auspices of the Train4Health project, funded by the Erasmus+ program of the European Union, the book contains six chapters written by international contributors from different disciplines. This chapter sets the stage for the remaining book, by introducing the Train4Health project and by explaining how the learning outcomes presented in subsequent chapters have been derived and linked with content of the book. Firstly, the Train4Health interprofessional competency framework to support behaviour change in persons self-managing chronic disease is briefly presented. This European competency framework was the starting point for developing the learning outcomes-based curriculum, which is succinctly addressed in the subsequent section. Finally, practical considerations about the Train4Health curriculum are discussed, including opportunities and challenges for interprofessional education.
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afstudeerscriptie van studente Psychologie Yasmin Gharavi gepubliceerd in BMC Psychiatry: Background: Family members who care for patients with severe mental illness experience emotional distress and report a higher incidence of mental illness than those in the general population. They report feeling inadequately prepared to provide the necessary practical and emotional support for these patients. The MAT training, an Interaction- Skills Training program (IST) for caregivers, was developed to meet those needs. This study used a single-arm pretestposttest design to examine the impact of the training on caregivers’ sense of competence (self-efficacy) and burden.
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Europe’s aging population is leading to a growing number of people affected by chronic disease, which will continue over the coming decades. Healthcare systems are under pressure to deliver appropriate care, partly due to the burden imposed on their limited financial and human resources by the growing number of people with (multiple) chronic diseases. Therefore, there is a strong call for patient self-management to meet these patients’ healthcare needs. While many patients experience medication self-management as difficult, it poses additional challenges for people with limited health literacy. This thesis aims to explore the needs of patients with a chronic disease and limited health literacy regarding medication self-management and how support for medication self-management can be tailored to those needs.
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