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Background In early stage chronic obstructive pulmonary disease (COPD), dyspnea has been reported as the main symptom; but at the end of life, patients dying from COPD have a heavy symptom burden. Still, specialist palliative care is seldom offered to patients with COPD; they more often receive end of life care in hospitals. Furthermore, symptoms, symptom relief and care activities in the last week of life for COPD patients are rarely studied. The aim of this study was to compare patient and care characteristics in late stage COPD patients treated in specialized palliative care (SPC) versus hospital. Methods Two nationwide registers were merged, the Swedish National Airway Register (SNAR) and the Swedish Register of Palliative Care (SRPC). Patients with COPD and 1), who had died in inpatient or outpatient SPC (n = 159) or in hospital (n = 439), were identified. Clinical COPD characteristics were extracted from the SNAR, and end of life (EOL) care characteristics from the SRPC. Descriptive statistics were used to describe the sample and the registered care and treatments. Independent samples t-test, Mantel–Haenszel chi-square test and Fisher’s exact test was used to compare variables. To examine predictors of place of death, bivariate and multivariate logistic regression analyses were performed with a dependent variable with demographic and clinical variables used as independent variables. Results The patients in hospitals were older and more likely to have heart failure or hypertension. Pain was more frequently reported and relieved in SPC than in hospitals (p = 0.001). Rattle, anxiety, delirium and nausea were reported at similar frequencies between the settings; but rattle, anxiety, delirium, and dyspnea were more frequently relieved in SPC (all p p p Conclusion This study provides evidence for referring more COPD patients to SPC, which is more focused on symptom management and psychosocial and existential support.

Background: Both single factors and composite measures have been suggested to predict mortality in patients with chronic obstructive pulmonary disease (COPD) and there is a need to analyze the relative importance of each variable. Objective: To explore the predictors of mortality for patients with COPD in relation to respiratory, cardiac, and malignant causes, as well as all causes of death. Methods: After merging the Swedish Respiratory Tract Register (SRTR) and the Swedish Cause of Death Register, patients with respiratory, cardiac, and other causes of death were identified. Demographic and clinical variables from the deceased patients' first registration with the SRTR were compared. Three univariable and multivariable Cox proportional hazards regression analyses were conducted for different causes of death, with time from first registration to either death or a fixed end date as dependent variable, and variables regarding demographics, respiration, and comorbidities as independent variables. Results: In the multivariable Cox models, mortality for patients with all causes of death was predicted by older age 1.79 (CI 1.41, 2.27), lower percentage of predicted forced expiratory volume in 1 second (FEV1 %) 0.99 (CI 0.98, 0.99), lower saturation 0.92 (CI 0.86, 0.97), worse dyspnea 1.48 (CI 1.26, 1.74) (p

Background: Severe asthma increases the risk of severe COVID-19 outcomes such as hospitalization and death. However, more studies are needed to understand the association between asthma and severe COVID-19. Methods: A cohort of 150,430 adult asthma patients were identified in the Swedish National Airway Register (SNAR) from 2013 to December 2020. Data on body mass index, smoking habits, lung function, and asthma control test (ACT) were obtained from SNAR, and uncontrolled asthma was defined as ACT ⩽19. Patients with severe COVID-19 were identified following hospitalization or in death certificates based on ICD-10 codes U07.1 and U07.2. The Swedish Prescribed Drug register was used to identify comorbidities and data from Statistics Sweden for educational level. Multivariate logistic regression analyses were used to estimate associations with severe COVID-19. Results: Severe COVID-19 was identified in 1067 patients (0.7%). Older age (OR = 1.04, 95% CI = 1.03–1.04), male sex (1.42, 1.25–1.61), overweight (1.56, 1.27–1.91), obesity (2.12, 1.73–2.60), high-dose inhaled corticosteroids in combination with long-acting β-agonists (1.40, 1.22–1.60), dispensed oral corticosteroids ⩾2 (1.48, 1.25–1.75), uncontrolled asthma (1.64, 1.35–2.00), cardiovascular disease (1.20, 1.03–1.40), depression (1.47, 1.28–1.68), and diabetes (1.52, 1.29–1.78) were associated with severe COVID-19, while current smoking was inversely associated (0.63, 0.47–0.85). When comparing patients who died from COVID-19 with those discharged alive from hospital until 31 December 2020, older age, male sex, and current smoking were associated with COVID-19 death. Conclusion: Patients with uncontrolled asthma and high disease burden, including increased asthma medication intensity, should be identified as risk patients for severe COVID-19. Furthermore, current smoking is strongly associated with COVID-19 death in asthma.

Background: Although chronic obstructive pulmonary disease (COPD) is a life-limiting disease with a significant symptom burden, the patients are more often referred to nursing homes (NH), than to specialist palliative care (SPC) at the end of life (EOL). This study aimed to compare patients with COPD in SPC with those in NH and to compare the care provided. Methods: A national register study was carried out where the Swedish National Airway Register and the Swedish Register of Palliative Care were merged. COPD patients who died in NHs or short-term facilities were included in the NH group (n = 415) and those who died in SPC were included in the SPC group (n = 355). Demographic and clinical variables were included from the Swedish National Airway Register and variables concerning EOL care from the Swedish Register of Palliative Care. Results: Symptom prevalence was similar in NHs and SPC, but symptom assessment (32% vs 20%), symptom relief medication (93-98% in SPC vs 74-90% in NH), EOL discussions (88% vs 66%), and bereavement support (94% vs 67%) were more likely in SPC (in all comparisons p

Kjell Larsson,1 Ann Ekberg-Jansson,2 Caroline Stridsman,3 Malin Hanno,4 Lowie EGW Vanfleteren5,6 1Integrative Toxicology, National Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden; 2Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; 3Department of Public Health and Clinical Medicine, Division of Medicine, Umeå University, Umeå, Sweden; 4Boehringer Ingelheim AB, Stockholm, Sweden; 5COPD Center, Department of Respiratory Medicine and Allergology, Sahlgrenska University Hospital, Gothenburg, 413 45, Sweden; 6Department of Internal Medicine and Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, 413 45, SwedenCorrespondence: Kjell LarssonIntegrative Toxicology, National Institute of Environmental Medicine, IMM, Karolinska Institutet, Stockholm, SE-171 77 Tel +46 70 582 07 63Email kjell.larsson@ki.seIntroduction: Swedish guidelines adhere to the international GOLD document regarding management of chronic obstructive pulmonary disease (COPD). Based on data from the Swedish National Airway Register (SNAR) the aim was to evaluate adherence to guidelines of pharmacological treatment of COPD in Swedish primary and secondary care.Methods: During a period of 18 months, data on symptoms (CAT, mMRC), lung function, exacerbation history and pharmacological treatment from 15,595 COPD patients from 853 primary care and 125 secondary care clinics were collected from SNAR. Patients with a co-diagnosis of asthma were excluded. Patients were divided into four treatment groups: no pharmacological treatment, short-acting bronchodilators alone, long-acting bronchodilators alone and ICS alone or in combination with bronchodilators.Results: Of the patients, 29% were in GOLD group A, 58% in group B, 2% in group C and 11% in group D. CAT score was ≥ 10 and mMRC score was below 2 in 30.9% of the patients and mMRC score was ≥ 2 and CAT score < 10 in 4.2% of the patients. In 61.4% of the patients, no exacerbation was registered during the last year. Long-acting bronchodilators were prescribed for 78% and ICS for 46% of all patients. In groups A, B, C and D, respectively, 21%, 11%, 11% and 5% did not receive any inhaler therapy; 67%, 81%, 81% and 90% received long-acting bronchodilators; 33%, 46%, 55% and 71% received any ICS containing therapy and 19%, 34%, 39% and 61% received triple therapy.Discussion: Data from the SNAR indicate that only a minority of COPD patients were untreated. There was a liberal use of ICS containing drug combinations in subjects who do not have an indication for ICS. A considerable proportion of subjects at high risk of exacerbations did not receive ICS treatment.Keywords: chronic obstructive pulmonary disease, COPD, glucocorticoids, registry

It is unclear if patients with COPD are at increased risk of becoming infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) [1, 2]. However, after contracting SARS-CoV-2, patients with COPD are at high risk of severe coronavirus disease 2019 (COVID-19), a condition associated with morbidity and mortality [3, 4]. Although studies have described COVID-19 cohorts and investigated COPD as a risk factor, studies investigating patients with COPD in relation to risks of COVID-19 remain rare. Approved by the Swedish Ethical Review Authority (2020-02777), the current study was based on the Swedish National Airway Register (SNAR), which includes a large, well-characterised cohort of patients with COPD [5]. In the cohort, patients who have been hospitalised or died from COVID-19 were identified, which afforded a unique opportunity to study predictors of severe COVID-19 in COPD., Older age, male sex, low educational level, symptom burden, degree of obstruction, underweight, obesity, comorbidity and prior COPD inpatient or secondary care predict severe COVID-19 in patients with COPD https://bit.ly/2VHZIEm

Background: The Swedish National Airway Register (SNAR) was initiated in 2013 to ensure and improve the quality of care for patients with asthma and COPD. Aim: To describe the development and design of SNAR, and to study the 2019 data to evaluate its potential utility related to improvement of quality of care. Methods: SNAR includes data from patients with asthma (both children and adults) and COPD from primary, secondary and tertiary care, and also, for COPD inpatient care. Data on diagnostic investigations (e.g. spirometry, blood sample, skin prick test), symptom-scores, comorbidities and prescribed treatments are registered. The registrations are entered manually by healthcare professionals, or directly transferred from electronic medical records to a web-based platform. Results: In 2019, 1000 clinics participated and data were directly transferred by about 88% of them. The register included data on 205,833 patients with asthma and 80,372 with COPD (of these, 5% had both diagnoses). Registrations of new patients and follow-up visits from primary and secondary/tertiary care in 2019 were completed for 75,707 patients with asthma (11,818 children 17 yr) and 38,117 with COPD. Depending on age and disease group, 43–77% had performed spirometry, 36–65% Asthma Control Test, and 60% COPD Assessment Test. The prevalence of current smoking was about 2% in adolescents, 10% in adults with asthma, and 34% in COPD. For these, smoking cessation support was offered to 27%, 38% and 51%, respectively. Overall, limited data were available on investigation of allergy, 6-min walk test, patient education and written treatment plans. Regarding asthma, sex-differences in disease management were evident. Conclusion: SNAR has cumulatively registered data from over 270,000 individuals, and the register is important for patients, caregivers, authorities, politicians and researchers to evaluate the effect of treatment and to ensure high and equal quality of care nationwide.

Little is known about the characteristics and treatments of patients with severe asthma across Europe, but both are likely to vary. This is the first study in the European Respiratory Society Severe Heterogeneous Asthma Research collaboration, Patient-centred (SHARP) Clinical Research Collaboration and it is designed to explore these variations. Therefore, we aimed to compare characteristics of patients in European severe asthma registries and treatments before starting biologicals.This was a cross-sectional retrospective analysis of aggregated data from 11 national severe asthma registries that joined SHARP with established patient databases.Analysis of data from 3236 patients showed many differences in characteristics and lifestyle factors. Current smokers ranged from 0% (Poland and Sweden) to 9.5% (Belgium), mean body mass index ranged from 26.2 (Italy) to 30.6 kg·m−2 (the UK) and the largest difference in mean pre-bronchodilator forced expiratory volume in 1 s % predicted was 20.9% (the Netherlands versus Hungary). Before starting biologicals patients were treated differently between countries: mean inhaled corticosteroid dose ranged from 700 to 1335 µg·day−1 between those from Slovenia versus Poland when starting anti-interleukin (IL)-5 antibody and from 772 to 1344 µg·day−1 in those starting anti-IgE (Slovenia versus Spain). Maintenance oral corticosteroid use ranged from 21.0% (Belgium) to 63.0% (Sweden) and from 9.1% (Denmark) to 56.1% (the UK) in patients starting anti-IL-5 and anti-IgE, respectively.The severe asthmatic population in Europe is heterogeneous and differs in both clinical characteristics and treatment, often appearing not to comply with the current European Respiratory Society/American Thoracic Society guidelines definition of severe asthma. Treatment regimens before starting biologicals were different from inclusion criteria in clinical trials and varied between countries.

To study health inequalities between native and immigrant Swedes, we investigated differences in self-rated health (SRH), mental wellbeing (MW), common symptoms (CS), and persistent illness (PI), and if socioeconomic status (SES), negative status inconsistency, or social support could account for such differences. A secondary analysis was conducted on questionnaire data from a random adult population sample of 4,023 individuals and register data from Statistics Sweden. χ2 tests and binary logistic regressions were used to identify health differences and study these after accounting for explanatory variables. Compared with natives, immigrants more commonly reported negative status inconsistency, poorer SES, and poorer social support as well as poor SRH, very poor MW, and high level of CS but not PI. Significant differences were accounted for by work-related factors and social support. We encourage future research to address how pre- and peri-migration factors relate to immigrants’ post-migration SES, social support, and health status. Policy Implications Given the relationship between work-related factors (employment status, hours worked per week, and income) and all health outcomes in this study, labour market interventions that facilitate the integration of immigrants into the labour market, and into occupations that better correspond with their capacity, will arguably have public health benefits. Feelings of loneliness was, in our study, important in accounting for immigrants’ poorer self-rated health compared with natives’. Therefore, we endorse interventions that facilitate immigrants’ social networking and integration and thereby reduce feelings of loneliness. Common physical and mental symptoms may be important indicators of health and we, thus, suggest these to be taken into account when developing ill-health prevention programmes.

Background: Patients with obstructive lung diseases may be at risk of hospitalization and/or death due to COVID-19. Aim: To estimate the frequency of severe COVID-19, and COVID-19-related mortality in a well-defined large population of patients with asthma and chronic inflammatory lung disease (COPD). Further to assess the frequency of asthma and COPD as registered comorbidities at discharge from hospital, and in death certificates. Methods: At the start of the pandemic, the Swedish National Airway Register (SNAR) included 271,404 patients with a physician diagnosis of asthma and/or COPD. In September 2020, after the first COVID-19 wave in Sweden, the database was linked with the National Patient Register (NPR), the Swedish Intensive Care Register and the Swedish Cause of Death Register, which all provide data about COVID-19 based on International Classification of Diseases (ICD-10) codes. Severe COVID-19 was defined as hospitalization and/or intensive care or death due to COVID-19. Results: Among patients in SNAR, 0.5% with asthma, and 1.2% with COPD were identified with severe COVID-19. Among patients Conclusion: The frequency of severe COVID-19 in asthma and COPD was relative low. Mortality for those hospitalized was double as high in COPD compared to asthma. Comorbid asthma and COPD were not always identified among patients with severe COVID-19.

Introduction: Chronic obstructive pulmonary disease (COPD) contributes to impaired health-related quality of life (HRQoL). Patient education and smoking cessation programs are recommended to reduce the number of exacerbations and hospitalizations, but the effects of such programs have yet to be explored in larger samples. Objective: The aim was to explore the longitudinal effects of patient education and smoking cessation programs on exacerbations and hospital admissions in patients with COPD. Design: This is a register study where data from the Swedish National Airway Register, including 20,666 patients with COPD, were used. Baseline measures of demographic, disease-related, and patient-reported variables were compared with a follow-up, 10–30 months after baseline. Descriptive statistics and changes between baseline and follow-up were calculated. Results: Comparing those not participating in education programs to those who did, HRQoL deteriorated significantly between baseline and follow-up in non-participants; there was no change in either exacerbations or hospitalizations in either group; there was a significant difference in baseline HRQoL between the two, and, when controlling for this, there was no significant change (p = 0.73). Patients who participated in smoking cessation programs were younger than the non-participants; mean 66.0 (standard deviations (SD) 7.8) vs. mean 68.1 (SD 8.8), p = 0.006. Among participants in smoking cessation programs, the proportion with continued smoking decreased significantly, from 76% to 66%, p

PURPOSE:To evaluate the effects of person-centred support via telephone in two chronically ill patient groups, chronic obstructive pulmonary disease (COPD) and/or chronic heart failure (CHF). METHOD:221 patients ≥ 50 years with COPD and/or CHF were randomized to usual care vs. usual care plus a person-centred telephone-support intervention and followed for six months. Patients in the intervention group were telephoned by a registered nurse initially to co-create a person-centred health plan with the patient and subsequently to discuss and evaluate the plan. The primary outcome measure was a composite score comprising General Self-Efficacy (GSE), re-hospitalization and death. Patients were classified as deteriorated if GSE had decreased by ≥ 5 points, or if they had been re-admitted to hospital for unscheduled reasons related to COPD and/or CHF or if they had died. RESULTS:At six-month follow-up no difference in the composite score was found between the two study groups (57.6%, n = 68 vs. 46.6%, n = 48; OR = 1.6, 95% CI: 0.9-2.7; P = 0.102) in the intention-to-treat analysis (n = 221); however, significantly more patients in the control group showed a clinically important decrease in GSE (≥ 5 units) (22.9%, n = 27 vs. 9.7%, n = 10; OR = 2.8, 95% CI: 1.3-6.0; P = 0.011). There were 49 clinical events (14 deaths, 35 re-admissions) in the control group and 41 in the intervention group (9 deaths, 32 re-admissions). Per-protocol analysis (n = 202) of the composite score showed that more patients deteriorated in the control group than in the intervention group (57.6%, n = 68 vs. 42.9%, n = 36; OR = 1.8, 95% CI 1.0-3.2; P = 0.039). CONCLUSION:Person-centred support via telephone mitigates worsening self-efficacy without increasing the risk of clinical events in chronically ill patients with CHF and/or COPD. This indicates that a patient-healthcare professional partnership may be established without the need for face-to-face consultations, even in vulnerable patient groups. TRIAL REGISTRATION:ISRCTN.com ISRCTN55562827.

To reduce healthcare costs associated with chronic obstructive pulmonary disease (COPD) and vacate hospital beds without compromising patient satisfaction with healthcare, alternatives for hospital treatment have been developed; however, few studies have qualitatively investigated patients’ experiences of these alternatives. This study aimed, first, to explore patients’ experiences of Sweden’s first COPD mobile care programme through semi-structured interviews with twelve patients, and, second, to evaluate if a human rights-based analysis could provide additional information. Data were, first, analysed using latent content analysis, resulting in three themes: security (effective follow-up, positive encounters), availability (convenience), and suggestions for improvement (increased amount of personnel, longer enrolment period, continued follow-up upon discharge from the programme). Security and availability contributed to high acceptability of and satisfaction with the programme; COPD mobile care can, thus, constitute an acceptable alternative to inpatient care for COPD patients. Findings were then further analysed using the AAAQ framework (availability, accessibility, acceptability, and quality) to determine how the COPD mobile care programme corresponds to the Right to health. This human rights-based analysis enabled the uncovering of certain groups being excluded from the programme, thereby generating valuable information for improving the programme by ensuring equal access and care for all COPD patients.

Guilt is associated with an increased level of mood disturbance and a poorer quality of life. The aim of this study was to explore how patients with severe COPD view and experience guilt and the ways in which they cope with this guilt. A total of 31 COPD patients were interviewed about their perceptions and experiences of guilt. Qualitative content analysis was used to examine the interviews. In the descriptive (manifest) analysis, the categories “not feeling personal guilt” and “experiencing guilt” emerged; in the interpretative (latent) analysis, various strategies for dealing with guilt were identified — for example, acceptance or blaming others. Relatively few patients reported that they felt guilt on a conscious level, but those who did expressed anguish, and remorse before God; some felt blamed by others. It is important that healthcare providers acknowledge the guilt that their patients express, since guilt may have adverse effects on the patients’ overall health.