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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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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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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The need for care will increase in the coming years. Most people with a disability or old age receive support from an informal caregiver. Caring for a person with dementia can be difficult because of the BPSD (Behavioral and Psychological Symptoms of Dementia). BPSD, including sleep disturbance, is an important factor for a higher care load. In this scoping review, we aim to investigate whether technology is available to support the informal caregiver, to lower the care burden, improve sleep quality, and therefore influence the reduction of social isolation of informal caregivers of people with dementia. A scoping review is performed following the methodological framework by Arksey and O'Mally and Rumrill et al., the scoping review includes scientific and other sources (unpublished literature, websites, reports, etc.). The findings of the scoping review shows that there are technology applications available to support the informal caregiver of a person with dementia. The technology applications mostly contribute to lower the care burden and/or improve sleep quality and therefore may contribute to reduce social isolation. The technology applications found target either the person with dementia, the informal caregiver, or both.
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Background: Given that relapse is common in patients in remission from anxiety and depressive disorders, relapse prevention is needed in the maintenance phase. Although existing psychological relapse prevention interventions have proven to be effective, they are not explicitly based on patients’ preferences. Hence, we developed a blended relapse prevention program based on patients’ preferences, which was delivered in primary care practices by mental health professionals (MHPs). This program comprises contact with MHPs, completion of core and optional online modules (including a relapse prevention plan), and keeping a mood and anxiety diary in which patients can monitor their symptoms. Objective: The aims of this study were to provide insight into (1) usage intensity of the program (over time), (2) the course of symptoms during the 9 months of the study, and (3) the association between usage intensity and the course of symptoms. Methods: The Guided E-healTh for RElapse prevention in Anxiety and Depression (GET READY) program was guided by 54 MHPs working in primary care practices. Patients in remission from anxiety and depressive disorders were included. Demographic and clinical characteristics, including anxiety and depressive symptoms, were collected via questionnaires at baseline and after 3, 6, and 9 months. Log data were collected to assess the usage intensity of the program. Results: A total of 113 patients participated in the study. Twenty-seven patients (23.9%) met the criteria for the minimal usage intensity measure. The core modules were used by ≥70% of the patients, while the optional modules were used by <40% of the patients. Usage decreased quickly over time. Anxiety and depressive symptoms remained stable across the total sample; a minority of 15% (12/79) of patients experienced a relapse in their anxiety symptoms, while 10% (8/79) experienced a relapse in their depressive symptoms. Generalized estimating equations analysis indicated a significant association between more frequent face-to-face contact with the MHPs and an increase in both anxiety symptoms (β=.84, 95% CI .39-1.29) and depressive symptoms (β=1.12, 95% CI 0.45-1.79). Diary entries and the number of completed modules were not significantly associated with the course of symptoms.
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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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Background: Medically unexplained physical symptoms (MUPS) are a leading cause of reduced work functioning. It is not known which factors are associated with reduced work functioning in people with moderate MUPS. Insight in these factors can contribute to prevention of reduced work functioning, associated work-related costs and in MUPS becoming chronic. Therefore, the aim of this study was to identify which demographic and health-related factors are associated with reduced work functioning, operationalized as impaired work performance and absenteeism, in people with moderate MUPS. Methods: Data of 104 participants from an ongoing study on people with moderate MUPS were used in this cross-sectional study. Ten independent variables were measured at baseline to determine their association with reduced work functioning: severity of psychosocial symptoms (four domains, measured with the Four-Dimensional Symptom Questionnaire), physical health (RAND 36-Item Health Survey), moderate or vigorous physical activity (Activ8 activity monitor), age, sex, education level and duration of complaints. Two separate multivariable linear regression analyses were performed with backward stepwise selection, for both impaired work performance and absenteeism. Results: Absenteeism rate rose with 2.5 and 0.6% for every increased point on the Four-Dimensional Symptom Questionnaire for domain 'depression' (B = 0.025, SE = 0.009, p = .006) and domain 'somatization' (B = 0.006, SE = 0.003, p = .086), respectively. An R2 value of 0.118 was found. Impaired work performance rate rose with 0.2 and 0.5% for every increased point on the Four-Dimensional Symptom Questionnaire for domain 'distress' (B = 0.002, SE = 0.001, p = .084) and domain 'somatization' (B = 0.005, SE = 0.001, p < .001), respectively. An R2 value of 0.252 was found. Conclusions: Severity of distress, probability of a depressive disorder and probability of somatization are positively associated with higher rates of reduced work functioning in people with moderate MUPS. To prevent long-term absenteeism and highly impaired work performance severity of psychosocial symptoms seem to play a significant role. However, because of the low percentage of explained variance, additional research is necessary to gain insight in other factors that might explain the variance in reduced work functioning even better.
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In Nederland verleent ongeveer een derde van de volwassen bevolking onbetaalde zorg. Het verlenen van mantelzorg kan in normale tijden zeer belastend zijn, maar de impact van een volksgezondheidscrisis op mantelzorgers is grotendeels onbekend. Deze studie richt zich op de vraag hoe de belasting van mantelzorgers veranderde na de COVID-19 pandemie en welke kenmerken verband hielden met deze veranderingen. We gebruiken zelfgerapporteerde gegevens van een steekproef van 965 mantelzorgers uit Nederland na 3 maanden pandemie om te onderzoeken hoe de objectieve belasting (d.w.z. uren besteed aan mantelzorg) en de subjectieve belasting waren veranderd, en wat hun zorggerelateerde kwaliteit van leven (CarerQol) was. We vonden dat de subjectieve belasting gemiddeld licht was toegenomen (van 4,75 naar 5,04 op een schaal van 0-10). Uit onze analyse bleek echter dat sommige zorgverleners er meer last van hadden dan anderen. De zwaarst getroffen zorgverleners waren vrouwen, met een laag inkomen, een betere lichamelijke gezondheid, een verminderde psychische gezondheid, zorgtaken voor kinderen, een langere duur van de zorg en zorgverleners die zorgden voor iemand met een verminderde lichamelijke en psychische gezondheid. Gemiddeld bleef de tijd die aan zorg werd besteed gelijk (een mediaan van 15 uur per week), maar bepaalde groepen zorgverleners ervoeren wel een verandering, namelijk degenen die zorg verleenden aan mensen in een instelling en aan mensen met een betere psychologische gezondheid vóór de pandemie. Bovendien hadden zorgverleners die veranderingen in objectieve belasting ervoeren niet dezelfde kenmerken als degenen die veranderingen in ervaren belasting en kwaliteit van leven ervoeren. Dit laat zien dat de gevolgen van een volksgezondheidscrisis voor zorgverleners niet kunnen worden gevangen door alleen te kijken naar objectieve of subjectieve belastingsmaten of kwaliteit van leven. Beleid voor langdurige zorg dat erop gericht is zorgverleners te ondersteunen om vol te houden tijdens een toekomstige crisis, moet gericht zijn op zorgverleners met een verhoogd risico op subjectieve belasting en een lagere CarerQol, zoals vrouwen, mensen met een laag inkomen en mensen met zorgtaken. Dergelijk beleid moet er rekening mee houden dat een vermindering van de objectieve belasting niet noodzakelijk leidt tot een vermindering van de subjectieve belasting voor alle zorgverleners.
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A loss of physical functioning (i.e., a low physical capacity and/or a low physical activity) is a common feature in patients with chronic obstructive pulmonary disease (COPD). To date, the primary care physiotherapy and specialized pulmonary rehabilitation are clearly underused, and limited to patients with a moderate to very severe degree of airflow limitation (GOLD stage 2 or higher). However, improved referral rates are a necessity to lower the burden for patients with COPD and for society. Therefore, a multidisciplinary group of healthcare professionals and scientists proposes a new model for referral of patients with COPD to the right type of exercise-based care, irrespective of the degree of airflow limitation. Indeed, disease instability (recent hospitalization, yes/no), the burden of disease (no/low, mild/moderate or high), physical capacity (low or preserved) and physical activity (low or preserved) need to be used to allocate patients to one of the six distinct patient profiles. Patients with profile 1 or 2 will not be referred for physiotherapy; patients with profiles 3–5 will be referred for primary care physiotherapy; and patients with profile 6 will be referred for screening for specialized pulmonary rehabilitation. The proposed Dutch model has the intention to get the right patient with COPD allocated to the right type of exercise-based care and at the right moment.
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Background: Everyday exposure to radiofrequency electromagnetic fields (RF-EMF) emitted from wireless devices such as mobile phones and base stations, radio and television transmitters is ubiquitous. Some people attribute non-specific physical symptoms (NSPS) such as headache and fatigue to exposure to RF-EMF. Most previous laboratory studies or studies that analyzed populations at a group level did not find evidence of an association between RF-EMF exposure and NSPS. Objectives: We explored the association between exposure to RF-EMF in daily life and the occurrence of NSPS in individual self-declared electro hypersensitive persons using body worn exposimeters and electronic diaries. Methods: We selected seven individuals who attributed their NSPS to RF-EMF exposure. The level of and variability in personal RF-EMF exposure and NSPS were determined during a three-week period. Data were analyzed using timeseries analysis in which exposure as measured and recorded in the diary was correlated with NSPS. Results: We found statistically significant correlations between perceived and actual exposure to wireless internet (WiFi - rate of change and number of peaks above threshold) and base stations for mobile telecommunications (GSM+UMTS downlink, rate of change) and NSPS scores in four of the seven participants. In two persons a higher EMF exposure was associated with higher symptom scores, and in two other persons it was associated with lower scores. Remarkably, we found no significant correlations between NSPS and timeweighted average power density, the most commonly used exposure metric. Conclusions: RF-EMFexposure was associated either positively or negatively with NSP Sinsome but not all of the selected self-declared electro hypersensitive persons. https://doi.org/10.1016/j.envint.2018.08.064
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