Charlotte Sandau Bech, Vibeke Noerholm, Dorthe Gaby Bové, Ingrid Poulsen
{"title":"Danish translation and linguistic validation of the multidimensional dyspnea profile.","authors":"Charlotte Sandau Bech, Vibeke Noerholm, Dorthe Gaby Bové, Ingrid Poulsen","doi":"10.1080/20018525.2021.1905498","DOIUrl":"10.1080/20018525.2021.1905498","url":null,"abstract":"Department of Respiratory Medicine and Endocrinology, Pulmonary Section, Copenhagen University Hospital Hvidovre, Hvidovre, Denmark; Department of Neurorehabilitation, Clinical Research Centre, Copenhagen University Hospital, Hvidovre, Hvidovre, Denmark; Department of Clinical Research, Copenhagen University Hospital, Hillerød, Denmark; Department of Neurorehabilitation, Copenhagen University Hospital Rigshospitalet, Kettegaard Allé 30, 2650 Hvidovre Denmark and Research Unit of Nursing and Health Care, Aarhus University, Denmark","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1905498"},"PeriodicalIF":1.9,"publicationDate":"2021-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2021.1905498","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25590012","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A J Chauhan, T P Brown, W Storrar, L Bjermer, G Eriksson, F Radner, S Peterson, J O Warner
{"title":"Effect of nocturnal Temperature-controlled Laminar Airflow on the reduction of severe exacerbations in patients with severe allergic asthma: a meta-analysis.","authors":"A J Chauhan, T P Brown, W Storrar, L Bjermer, G Eriksson, F Radner, S Peterson, J O Warner","doi":"10.1080/20018525.2021.1894658","DOIUrl":"https://doi.org/10.1080/20018525.2021.1894658","url":null,"abstract":"<p><p><b>Background</b>: Allergen avoidance is important in allergic asthma management. Nocturnal treatment with Temperature-controlled Laminar Airflow (TLA) has been shown to provide a significant reduction in the exposure to allergens in the breathing zone, leading to a long-term reduction in airway inflammation and improvement in Quality of life (QoL). Allergic asthma patients symptomatic on Global Initiative for Asthma (GINA) step 4/5 were found to benefit the most as measured by Asthma Quality of Life Questionnaire (AQLQ). However, the effect of TLA on severe asthma exacerbations is uncertain and therefore a meta-analysis was performed. <b>Methods</b>: Patients with severe allergic asthma (GINA 4/5) were extracted from two 1-year randomised, double-blind, placebo-controlled trials conducted with TLA. A meta-analysis of the effect on severe exacerbations was performed by negative binomial regression in a sequential manner, defined by baseline markers of asthma control (symptoms and QoL scores). <b>Results</b>: The pooled dataset included 364patients. Patients with more symptoms at baseline (ACT<18 or ACQ7>3; N=179), had a significant mean 41% reduction in severe exacerbations (RR=0.59 (0.38-0.90); p=0.015) in favour of TLA. Higher ACQ7 cut-points of 3.5-4.5 resulted in significant reductions of 48-59%.More uncontrolled patients based on AQLQ total and symptom domains ≤3.0 at baseline also showed a significant reduction in severe exacerbations for TLA vs. placebo ((47% (p=0.037) and 53% (p=0.011), respectively). The meta-analysis also confirmed a significant difference in AQLQ-responders ((Minimal Clinically Important Difference)≥0.5; 74% vs. 43%, p=0.04). <b>Conclusion</b>: This meta-analysis of individual patient data shows a beneficial effect on severe exacerbations and quality of life for TLA over placebo in more symptomatic patients with severe allergic asthma. These outcomes support the national management recommendations for patients with symptomatic severe allergic asthma. The actual effect of TLA on severe exacerbations should be confirmed in a prospective study with larger numbers of patients.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1894658"},"PeriodicalIF":1.9,"publicationDate":"2021-03-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2021.1894658","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25513568","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Fractional exhaled nitric oxide as a determinant for the clinical course of asthma: a systematic review.","authors":"Charlotte Suppli Ulrik, Peter Lange, Ole Hilberg","doi":"10.1080/20018525.2021.1891725","DOIUrl":"https://doi.org/10.1080/20018525.2021.1891725","url":null,"abstract":"<p><strong>Background: </strong>Precision medicine means linking the right patient to the right management strategy including best possible pharmacological therapy, considering the individual variability of the disease characteristics, type of inflammation, genes, environment, and lifestyle. For heterogenous diseases such as asthma, reliable biomarkers are needed to facilitate the best possible disease control and reduce the risk of side effects. The present review examines fractional exhaled nitric oxide (FeNO) as a guide for the management strategy of asthma and predictor of its clinical course.</p><p><strong>Method: </strong>The literature included was identified by searching the PubMed database using specific key words and MeSH terms. Studies were not excluded based on their design alone. The search resulted in 212 hits, of which 35 articles were included in this review.</p><p><strong>Results: </strong>Several studies support a potential role for high FeNO levels as a prognostic biomarker for accelerated lung function decline in adults with newly diagnosed asthma. Furthermore, studies report an association between high FeNO levels and excess decline in FEV<sub>1</sub> in adults with long-standing moderate to severe asthma despite optimised therapy, whereas the findings for patients with less severe disease are conflicting. Applying a FeNO-based management algorithm reduces the exacerbation rate in adults with asthma. Similar observations are seen in children, though based on fewer studies. The available studies provide evidence that the level of FeNO may be useful as a predictor of subsequent loss of asthma control in adults, though the evidence is somewhat conflicting in children and young adults.</p><p><strong>Conclusion: </strong>The present review provides evidence of the prognostic value of FeNO as a surrogate biomarker for type 2 inflammation in the airways. FeNO is likely to emerge as an important biomarker in monitoring and tailoring modern asthma treatment, either alone or in combination with other biomarkers.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1891725"},"PeriodicalIF":1.9,"publicationDate":"2021-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2021.1891725","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25467149","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Cecilie Norup Thomsen, Søren Sperling, Joan Fledelius, Pia Holland Gjørup
{"title":"Rare nocardiosis in danish patient with diabetes.","authors":"Cecilie Norup Thomsen, Søren Sperling, Joan Fledelius, Pia Holland Gjørup","doi":"10.1080/20018525.2021.1882030","DOIUrl":"https://doi.org/10.1080/20018525.2021.1882030","url":null,"abstract":"<p><p>We herein report a rare case that describes and visualizes nocardiosis in a patient with diabetes. The patient presented with recurring fever, gout, leg pain, frailty and muscular pain through nine months, before a core needle biopsi, from an abscess in the abdominal musculature, revealed Nocardia Paucivorans. A PET-CT-scan showed multiple muscular FDG-positive sites. Furthermore, he experienced serious side effects to Sulfametoxazole and Trimethoprim, the antibiotic of choice for this type of infection. He was then switched to Moxifloxacin and Ampicillin. Nocardia often presents as opportunistic infections, typically in patients with severe immunodeficiencies, such as HIV, use of high-dose corticosteroids, hematologic malignancies or immunosuppression following organ transplantation. This case illustrates how a patient with only relative immunodeficiency gets rare nocardiosis. Our sparse knowledge on clinical presentation is based on case-reports and treatment is empirical. Hence, a better understanding of the clinical presentation and treatment is important. Especially given the prospect, that the health care system faces a greater load of patients with diabetes and other immunodeficiencies in the future.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1882030"},"PeriodicalIF":1.9,"publicationDate":"2021-02-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2021.1882030","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25467148","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Miia M Aro, Ulla Anttalainen, Olli Polo, Tarja Saaresranta
{"title":"Mood, sleepiness, and weight gain after three years on CPAP therapy for sleep apnoea.","authors":"Miia M Aro, Ulla Anttalainen, Olli Polo, Tarja Saaresranta","doi":"10.1080/20018525.2021.1888394","DOIUrl":"https://doi.org/10.1080/20018525.2021.1888394","url":null,"abstract":"<p><p><b>Background:</b> The prevalence of obstructive sleep apnoea syndrome (OSAS) keeps on rising. Daytime sleepiness resulting from fragmented sleep is the prime symptom, and obesity the major risk factor for OSAS. Quality of life with OSAS is often affected by depressive symptoms and anxiety. Nasal continuous positive airway pressure (CPAP) therapy reduces daytime sleepiness, but the results on the effect on mood, physical activity, and weight are controversial especially on long-term therapy. Purpose of this study was to evaluate these factors and predictors of weight gain during long-term CPAP therapy. <b>Methods:</b> Consecutive patients (n = 223), referred to sleep study with suspected OSAS, were enrolled. Patients underwent a cardiorespiratory polygraphy at baseline and a battery of questionnaires was completed, both at baseline, and after three years of follow-up. Total of 149 (67%; M 65, F 84) patients completed the follow-up. Of the 149 patients, 76 (51.0%; M 32, F 44) used CPAP. <b>Results:</b> In this study, depressive symptoms, anxiety, and sleepiness were alleviated during CPAP therapy. However, therapy did not have an influence on cravings of different food categories, or exercise habits and exercise duration. From the various factors studied, solely higher adherence to CPAP therapy was associated with weight gain. <b>Conclusions:</b> This research provides further evidence that long-term CPAP therapy in patients with OSAS not only decreases sleepiness and improves sleep quality but could also alleviate depressive symptoms and anxiety. In addition, our study reinforces that CPAP therapy alone is not sufficient for weight management in patients with OSAS. Regardless of comprehensive battery of questionnaires, we were unable to establish markers predicting weight gain during therapy. We advise on life-style counselling and weight management program to all patients with obesity on CPAP therapy.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1888394"},"PeriodicalIF":1.9,"publicationDate":"2021-02-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2021.1888394","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25415126","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Birgit Refsgaard Iversen, Lotte Ørneborg Rodkjær, Vibeke Bregnballe, Anders Løkke
{"title":"The impact on severe exacerbations of establishing a cross-sectorial lung team for patients with COPD at high risk of exacerbating: a pilot study.","authors":"Birgit Refsgaard Iversen, Lotte Ørneborg Rodkjær, Vibeke Bregnballe, Anders Løkke","doi":"10.1080/20018525.2021.1882029","DOIUrl":"https://doi.org/10.1080/20018525.2021.1882029","url":null,"abstract":"<p><p><b>Background</b>: Exacerbation in Chronic obstructive pulmonary disease (COPD) becomes more frequent with advancing disease severity and often the patients end up being hospitalized. <b>Objective</b>: To evaluate the impact on exacerbations of establishing a cross-sectorial lung team (CLT) for patients with COPD at high risk of exacerbating. <b>Methods</b>: In total, 49 patients with severe COPD were affiliated to a CLT for 6 months. On request from the participants, the CLT was available for telephone calls and home visits day and night to initiate treatment and give advice. Data regarding hospitalizations were collected 3 years prior to the intervention year to predict future numbers of admissions and length of stay. These predictions were compared with the observed data. COPD assessment test (CAT) was conducted before and after intervention. <b>Results</b>: Observed risk of hospitalization (0.54 (95% CI 0.32; 0.90), p = 0.0192)) and length of hospital stay due to COPD (0.41 (95% CI 0.22; 0.76), p = 0.0046)) were significantly lower during the intervention period than predicted. A numerical but non-significant improvement in the total CAT score of 1.10 (95%CI: -0.71;2.91), p = 0.226)) was observed. <b>Conclusion</b>: Affiliation to a CLT seemed to lower the burden of COPD exacerbations in a high-risk population.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1882029"},"PeriodicalIF":1.9,"publicationDate":"2021-02-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2021.1882029","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39791663","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Turpeinen Heikki, Laulajainen-Hongisto Anu, Lyly Annina, Numminen Jura, Penttilä Elina, Johanna Sahlman, Toppila-Salmi Sanna, Kauppi Paula
{"title":"Lung function and side effects of Aspirin desensitization: a real world study.","authors":"Turpeinen Heikki, Laulajainen-Hongisto Anu, Lyly Annina, Numminen Jura, Penttilä Elina, Johanna Sahlman, Toppila-Salmi Sanna, Kauppi Paula","doi":"10.1080/20018525.2020.1869408","DOIUrl":"10.1080/20018525.2020.1869408","url":null,"abstract":"<p><p><b>Introduction</b>: NSAID-exacerbated respiratory disease (N-ERD) is mainly treated with topical and oral corticosteroids, as well as acetylsalicylic acid (ASA) treatment after desensitization (ATAD). During desensitization and ATAD, it is common to experience an exacerbation of respiratory symptoms and other side effects, which may lead to cessation of treatment. <b>Objectives</b>: The aim of this retrospective follow-up study was to evaluate the effect of ATAD on lung functions and respiratory symptoms, and to clarify the occurrence of adverse events. <b>Method</b>s: We analysed the patient data of 67 patients treated with ASA desensitization between 2006 and 2016 in three hospitals, concerning adverse events, respiratory symptoms, lung function tests, and reasons for discontinuation. <b>Results</b>: 26 patients discontinued AD or ATAD. The most common reasons for discontinuation were lack of response (9%) and side effects (18%). ATAD did not affect lung function values in the follow-up of up to 5 years. Upper respiratory symptoms improved in 31 (52%) and lower respiratory symptoms (LRS) in 7 (10%) cases. Side effects occurred in 42 (63%) cases, the most common being dyspepsia and lower respiratory symptoms. <b>Conclusion</b>: Our study suggests that ATAD has little effect on lower airway functions. Side effects were common, and discontinuation rates high.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1869408"},"PeriodicalIF":1.9,"publicationDate":"2021-01-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2020.1869408","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25315788","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Karin Rosenkilde Laursen, Jakob Hjort Bønløkke, Elisabeth Bendstrup, Merete Bilde, Marianne Glasius, Vibeke Heitmann Gutzke, Shamjad Puthukkadan Moosakutty, Anna-Carin Olin, Peter Ravn, Kirsten Østergaard, Torben Sigsgaard
{"title":"An RCT of acute health effects in COPD-patients after passive vape exposure from e-cigarettes.","authors":"Karin Rosenkilde Laursen, Jakob Hjort Bønløkke, Elisabeth Bendstrup, Merete Bilde, Marianne Glasius, Vibeke Heitmann Gutzke, Shamjad Puthukkadan Moosakutty, Anna-Carin Olin, Peter Ravn, Kirsten Østergaard, Torben Sigsgaard","doi":"10.1080/20018525.2020.1861580","DOIUrl":"10.1080/20018525.2020.1861580","url":null,"abstract":"<p><p><b>Background</b>: E-cigarette use has been shown to have short-term acute effects among active users but less is known of the acute passive effects, particularly among individuals with existing respiratory diseases. <b>Objective</b>: To investigate local and systemic effects of short-term passive vape exposure among patients with mild or moderate chronic obstructive pulmonary disease (COPD). <b>Methods</b>: In a double-blinded crossover study 16 non-smoking COPD-patients (mean age 68) were randomly exposed for 4 h to passive vape (median PM<sub>2.5</sub>: 18 µg/m<sup>3</sup> (range: 8-333)) and clean air (PM<sub>2.5</sub> < 6 µg/m<sup>3</sup>) separated by 14 days. Particles were measured using an ultrafine particle counter (P-TRAK) and a scanning mobility particle sizer (SMPS). Health effects including Surfactant Protein-A (SP-A) and albumin in exhaled air, spirometry, FeNO, and plasma proteins were evaluated before, right after, and 24 hours after exposure. Participants reported symptoms throughout exposure sessions. Data were analyzed using mixed models. <b>Results</b>: SP-A in exhaled air was negatively affected by exposure to vape and several plasma proteins increased significantly. Throat irritation was more pronounced during passive vape exposure, while FVC and FEV<sub>1</sub> decreased, however, not significantly. <b>Conclusions:</b> SP-A in exhaled air and some plasma proteins were affected by passive vape in patients with COPD indicating inflammation, showing that passive vape exposure is potentially harmful.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1861580"},"PeriodicalIF":1.9,"publicationDate":"2020-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2020.1861580","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"38827814","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Anja Gouliaev, Ole Hilberg, Niels Lyhne Christensen, Torben Rasmussen, Rikke Ibsen, Anders Løkke
{"title":"Comorbidity among Danish lung cancer patients before and after initial cancer diagnosis.","authors":"Anja Gouliaev, Ole Hilberg, Niels Lyhne Christensen, Torben Rasmussen, Rikke Ibsen, Anders Løkke","doi":"10.1080/20018525.2020.1861579","DOIUrl":"10.1080/20018525.2020.1861579","url":null,"abstract":"<p><p><b>Objective:</b> Lung cancer is the leading cause of cancer-related death worldwide. This population-based longitudinal study investigates survival rates and the burden of comorbidity before and after being diagnosed with lung cancer in Denmark. <b>Methods:</b> From the Danish National Patient Registry (NPR) and the Danish Civil Registration System (CPR), 53,749 patients with lung cancer were identified and matched with 214,304 controls on age, gender, region of residence and marital status in the period 1998-2010. From the NPR, data on survival and comorbidity, registered as ICD-10 diagnoses, were extracted. Comorbidity was assessed using the Deyo-Charlson comorbidity score (DCcs) and mortality using Kaplan-Meier survival curves. <b>Results:</b> 1-year survival rate for Danish lung cancer patients was 51.7 % (CI 51.3-52.1) and 5-year survival rate was 14.7 % (CI 14.3-15.0) compared to 96.8 % (CI 96.7-96.8) and 84.0 % (CI 83.9-84.2) for controls respectively. Overall, cases had significantly more comorbidity compared to controls before being diagnosed with lung cancer. Prior to being diagnosed with lung cancer, more cases than controls had been diagnosed with other malignancies (11.4 % vs 6.0 % p<0.005), diseases of the circulatory system (16.4 % vs 13.0 % p<0.005) and respiratory diseases (12.2 % vs 4.8 % p<0.005). Among lung cancer patients 21.8 % had a DCcs ≥ 1 compared to 13.3 % among controls (P<0.005). The 1-year survival for DCcs =0 was 54.8 % (CI 54.3-55.3) for lung cancer patients and 97.8 % (CI 97.7-97.9) for controls. Decreasing survival with increasing DCcs was found in both groups. <b>Conclusion:</b> This study provides unique nationwide comorbidity data on patients before and after being diagnosed with lung cancer. We found increased mortality with increasing comorbidity, however more pronounced among controls compared to patients with lung cancer.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1861579"},"PeriodicalIF":1.9,"publicationDate":"2020-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/da/1a/ZECR_8_1861579.PMC7758043.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39139533","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Georgia Papapostolou, Alf Tunsäter, Jonas Binnmyr, Gunilla Telg, Klaus Roslind
{"title":"Patient perspectives on living with severe asthma in Denmark and Sweden.","authors":"Georgia Papapostolou, Alf Tunsäter, Jonas Binnmyr, Gunilla Telg, Klaus Roslind","doi":"10.1080/20018525.2020.1856024","DOIUrl":"https://doi.org/10.1080/20018525.2020.1856024","url":null,"abstract":"<p><p><b>Background</b>: Severe asthma has an acknowledged impact on health-related quality of life (HRQOL) and is associated with substantial health care costs. This study aimed to investigate the patients' own experiences of the disease, perceptions of HRQOL, and awareness of disease management. <b>Methods</b>: This study included severe asthma patients in Sweden and Denmark. A quantitative Web-based survey and qualitative in-depth interviews (IDIs) were conducted. The survey included St. George's Respiratory Questionnaire (SGRQ), Asthma Control Test (ACT), Work Productivity and Activity Impairment (WPAI), and a study-specific questionnaire on quality of care and disease awareness. Telephone-based IDIs were conducted by medical interviewers following a semi-structured interview guide. <b>Results</b>: A total of 93 patients participated in the Web survey, and 33 participated in the IDIs. In the survey, the vast majority (77%; 72/93) had uncontrolled asthma (ACT<20). Mean total SGRQ score was 47.4 (59.7 symptom, 53.7 activity, 39.9 impact scores). Nearly 60% were treated in primary care. The IDIs revealed a long path to diagnosis, substantial and constant need for adaptations because of disease limitations, high burden on family members, social restrictions, and sick leaves and income losses. Patient awareness about guidelines, treatment goals, and available therapies was poor, and a low level of satisfaction by primary health care was seen. <b>Conclusions</b>: The vast majority of this severe asthma population had uncontrolled asthma and poor access to lung expert physicians. Impaired HRQOL despite patients' adaptations was indicated. These findings highlight the need for structured patient education and greater access to units with disease-specific knowledge.</p>","PeriodicalId":11872,"journal":{"name":"European Clinical Respiratory Journal","volume":"8 1","pages":"1856024"},"PeriodicalIF":1.9,"publicationDate":"2020-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/20018525.2020.1856024","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"39143030","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}