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BackgroundConversational agents (CAs) for chronic disease management are receiving increasing attention in academia and the industry. However, long-term adherence to CAs is still a challenge and needs to be explored. Personalization of CAs has the potential to improve long-term adherence and, with it, user satisfaction, task efficiency, perceived benefits, and intended behavior change. Research on personalized CAs has already addressed different aspects, such as personalized recommendations and anthropomorphic cues. However, detailed information on interaction styles between patients and CAs in the role of medical health care professionals is scant. Such interaction styles play essential roles for patient satisfaction, treatment adherence, and outcome, as has been shown for physician-patient interactions. Currently, it is not clear (1) whether chronically ill patients prefer a CA with a paternalistic, informative, interpretive, or deliberative interaction style, and (2) which factors influence these preferences. ObjectiveWe aimed to investigate the preferences of chronically ill patients for CA-delivered interaction styles. MethodsWe conducted two studies. The first study included a paper-based approach and explored the preferences of chronic obstructive pulmonary disease (COPD) patients for paternalistic, informative, interpretive, and deliberative CA-delivered interaction styles. Based on these results, a second study assessed the effects of the paternalistic and deliberative interaction styles on the relationship quality between the CA and patients via hierarchical multiple linear regression analyses in an online experiment with COPD patients. Patients’ sociodemographic and disease-specific characteristics served as moderator variables. ResultsStudy 1 with 117 COPD patients revealed a preference for the deliberative (50/117) and informative (34/117) interaction styles across demographic characteristics. All patients who preferred the paternalistic style over the other interaction styles had more severe COPD (three patients, Global Initiative for Chronic Obstructive Lung Disease class 3 or 4). In Study 2 with 123 newly recruited COPD patients, younger participants and participants with a less recent COPD diagnosis scored higher on interaction-related outcomes when interacting with a CA that delivered the deliberative interaction style (interaction between age and CA type: relationship quality: b=−0.77, 95% CI −1.37 to −0.18; intention to continue interaction: b=−0.49, 95% CI −0.97 to −0.01; working alliance attachment bond: b=−0.65, 95% CI −1.26 to −0.04; working alliance goal agreement: b=−0.59, 95% CI −1.18 to −0.01; interaction between recency of COPD diagnosis and CA type: working alliance goal agreement: b=0.57, 95% CI 0.01 to 1.13). ConclusionsOur results indicate that age and a patient’s personal disease experience inform which CA interaction style the patient should be paired with to achieve increased interaction-related outcomes with the CA. These results allow the design of personalized health care CAs with the goal to increase long-term adherence to health-promoting behavior.

BackgroundChronic obstructive pulmonary disease (COPD) is one of the most common disorders in the world. COPD is characterized by airflow obstruction, which is not fully reversible. Patients usually experience breathing-related symptoms with periods of acute worsening and a substantial decrease in the health-related quality-of-life. Active and comprehensive disease management can slow down the progressive course of the disease and improve patients’ disabilities. Technological progress and digitalization of medicine have the potential to make elaborate interventions easily accessible and applicable to a broad spectrum of patients with COPD without increasing the costs of the intervention. ObjectiveThis study aims to develop a comprehensive telemonitoring and hybrid virtual coaching solution and to investigate its effects on the health-related quality of life of patients with COPD. MethodsA monocentric, assessor-blind, two-arm (intervention/control) randomized controlled trial will be performed. Participants randomized to the control group will receive usual care and a CAir Desk (custom-built home disease-monitoring device to telemonitor disease-relevant parameters) for 12 weeks, without feedback or scores of the telemonitoring efforts and virtual coaching. Participants randomized to the intervention group will receive a CAir Desk and a hybrid digital coaching intervention for 12 weeks. As a primary outcome, we will measure the delta in the health-related quality of life, which we will assess with the St. George Respiratory Questionnaire, from baseline to week 12 (the end of the intervention). ResultsThe development of the CAir Desk and virtual coach has been completed. Recruitment to the trial started in September 2020. We expect to start data collection by December 2020 and expect it to last for approximately 18 months, as we follow a multiwave approach. We expect to complete data collection by mid-2022 and plan the dissemination of the results subsequently. ConclusionsTo our knowledge, this is the first study investigating a combination of telemonitoring and hybrid virtual coaching in patients with COPD. We will investigate the effectiveness, efficacy, and usability of the proposed intervention and provide evidence to further develop app-based and chatbot-based disease monitoring and interventions in COPD. Trial RegistrationClinicalTrials.gov identifier: NCT04373070; https://clinicaltrials.gov/ct2/show/NCT04373070 International Registered Report Identifier (IRRID)DERR1-10.2196/20412

Aim: Patients living with chronic obstructive pulmonary disease (COPD) are challenged with managing the medical, social, and emotional consequences of the disease. Self-management of the disease plays a major role in actively preventing a deterioration such as an acute exacerbation (AECOPD). The aim of this study was to explore patients' perspectives on self-management, for both participants who received a complex multicomponent behavior-focused intervention (e.g., physical activity) after hospitalization (intervention group) and participants who did not (control group). Design: A qualitative descriptive study design was used. Methods: Semi-structured one-to-one interviews were conducted (n = 10). A newly implemented counselling program conducted by an Advanced Nursing Practice (ANP) care team was introduced as part of the study. Participants in the control group received standard treatment for hospitalized AECOPD, while the intervention group received counselling focused on patient self-management from the ANP care team over a 13-week period. Control and intervention group narratives were compared using framework analysis. Results: The predominant four topics in both groups were deducted from Lorig's conceptualization of self-management. These were: the management of burdensome emotions, the management of life roles, the management of medical regimen and recommendations, and the perception of self-management needs. The participants in the intervention group reported that counselling by the ANP team helped motivate them to sustain physical activity. They also found it reassuring to have a contact person they could easily reach out to in case of any queries or uncertainties, which provided them with a sense of security. Conclusion: There is a need for support in several areas of self-management after hospitalization for AECOPD. The newly introduced nurse-led self-management support was immediately well-received. Indeed, all participants appreciated the contact with their respective health professionals.

Abstract Background Alpha-1 antitrypsin deficiency (AATD) is a rare disease that is associated with an increased risk of pulmonary emphysema. The European AATD Research Collaboration (EARCO) international registry was founded with the objective of characterising the individuals with AATD and investigating their natural history. Methods The EARCO registry is an international, observational and prospective study of individuals with AATD, defined as AAT serum levels 1000 individuals with AATD from 15 countries in its first 2 years. Baseline cross sectional data provide relevant information about the clinical phenotypes of the disease, the patterns of functional impairment and factors associated with poor lung function. Trial registration www.clinicaltrials.gov (ID: NCT04180319)

Approximately, half of COPD patients die from cardiovascular diseases. A prolongation of cardiac repolarization (measured as QTc interval) is associated with cardiovascular events or cardiovascular deaths in populations of older adults and COPD. One way to reduce the QTc could be to increase physical activity (PA). We investigated whether QTc can be reduced by an increase in PA in patients with severe COPD. This is a secondary outcome analysis from a randomized controlled trial investigating the effects of a 3 months pedometer based program to improve PA. 12-lead ECG was assessed at baseline and after 3 months. We measured PA using a validated triaxial accelerometer. Data were analyzed from 59 participants. Multiple regression modeling, including adjustment for baseline QTc, sex, QT prolonging medications, BMI, smoking status and FEV1%, showed no evidence for an association between an improvement of ≥15% PA and QTc reduction. A 15% improvement in PA according to step counts over 3 months seems not to reduce QTc interval by its MCID of 20 ms in patients with severe to very severe COPD.

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Background High bacterial burden in the lung microbiota predicts progression of idiopathic pulmonary fibrosis (IPF). Azithromycin (AZT) is a macrolide antibiotic known to alter the lung microbiota in several chronic pulmonary diseases, and observational studies have shown a positive effect of AZT on mortality and hospitalisation rate in IPF. However, the effect of AZT on the lung microbiota in IPF remains unknown. Methods We sought to determine the impact of a 3-month course of AZT on the lung microbiota in IPF. We assessed sputum and oropharyngeal swab specimens from 24 adults with IPF included in a randomised controlled crossover trial of oral AZT 500 mg 3 times per week. 16S rRNA gene amplicon sequencing and quantitative PCR (qPCR) were performed to assess bacterial communities. Antibiotic resistance genes (ARGs) were assessed using real-time qPCR. Results AZT significantly decreased community diversity with a stronger and more persistent effect in the lower airways (sputum). AZT treatment altered the temporal kinetics of the upper (oropharyngeal swab) and lower airway microbiota, increasing community similarity between the two sites for 1 month after macrolide cessation. Patients with an increase in ARG carriage had lower bacterial density and enrichment of the genus Streptococcus. In contrast, patients with more stable ARG carriage had higher bacterial density and enrichment in Prevotella. Conclusions AZT caused sustained changes in the diversity and composition of the upper and lower airway microbiota in IPF, with effects on the temporal and spatial dynamics between the two sites.

Research question The assessment of cough frequency in clinical practice relies predominantly on the patient's history. Currently, objective evaluation of cough is feasible with bulky equipment during a brief time (i.e. hours up to 1 day). Thus, monitoring of cough has been rarely performed outside clinical studies. We developed a small wearable cough detector (SIVA-P3) that uses deep neural networks for the automatic counting of coughs. This study examined the performance of the SIVA-P3 in an outpatient setting. Methods We recorded cough epochs with SIVA-P3 over eight consecutive days in patients suffering from chronic cough. During the first 24 h, the detector was validated against cough events counted by trained human listeners. The wearing comfort and the device usage were assessed using a questionnaire. Results In total, 27 participants (mean±sd age 50±14 years) with either chronic unexplained cough (n=12), COPD (n=4), asthma (n=5) or interstitial lung disease (n=6) were studied. During the daytime, the sensitivity of SIVA-P3 cough detection was 88.5±2.49% and the specificity was 99.97±0.01%. During the night-time, the sensitivity was 84.15±5.04% and the specificity was 99.97±0.02%. The wearing comfort and usage of the device was rated as very high by most participants. Conclusion SIVA-P3 enables automatic continuous cough monitoring in an outpatient setting for objective assessment of cough over days and weeks. It shows comparable sensitivity or higher sensitivity than other devices with fully automatic cough counting. Thanks to its wearing comfort and the high performance for cough detection, it has the potential for being used in routine clinical practice.

Abstract Aims Acute pulmonary disorders are known physical triggers of takotsubo syndrome (TTS). This study aimed to investigate prevalence of acute pulmonary triggers in patients with TTS and their impact on outcomes. Methods and results Patients with TTS were enrolled from the International Takotsubo Registry and screened for triggering factors and comorbidities. Patients were categorized into three groups (acute pulmonary trigger, chronic lung disease, and no lung disease) to compare clinical characteristics and outcomes. Of the 1670 included patients with TTS, 123 (7%) were identified with an acute pulmonary trigger, and 194 (12%) had a known history of chronic lung disease. The incidence of cardiogenic shock was highest in patients with an acute pulmonary trigger compared with those with chronic lung disease or without lung disease (17% vs. 10% vs. 9%, P = 0.017). In‐hospital mortality was also higher in patients with an acute pulmonary trigger than in the other two groups, although not significantly (5.7% vs. 1.5% vs. 4.2%, P = 0.13). Survival analysis demonstrated that patients with an acute pulmonary trigger had the worst long‐term outcome (P = 0.002). The presence of an acute pulmonary trigger was independently associated with worse long‐term mortality (hazard ratio 2.12, 95% confidence interval 1.33–3.38; P = 0.002). Conclusions The present study demonstrates that TTS is related to acute pulmonary triggers in 7% of all TTS patients, which accounts for 21% of patients with physical triggers. The presence of acute pulmonary trigger is associated with a severe in‐hospital course and a worse long‐term outcome.

Aim: Patients living with chronic obstructive pulmonary disease (COPD) are challenged with managing the medical, social, and emotional consequences of the disease. Self-management of the disease plays a major role in actively preventing a deterioration such as an acute exacerbation (AECOPD). The aim of this study was to explore patients’ perspectives on self-management, for both participants who received a complex multicomponent behavior-focused intervention (e.g., physical activity) after hospitalization (intervention group) and participants who did not (control group). Design: A qualitative descriptive study design was used. Methods: Semi-structured one-to-one interviews were conducted (n = 10). A newly implemented counselling program conducted by an Advanced Nursing Practice (ANP) care team was introduced as part of the study. Participants in the control group received standard treatment for hospitalized AECOPD, while the intervention group received counselling focused on patient self-management from the ANP care team over a 13-week period. Control and intervention group narratives were compared using framework analysis. Results: The predominant four topics in both groups were deducted from Lorig’s conceptualization of self-management. These were: the management of burdensome emotions, the management of life roles, the management of medical regimen and recommendations, and the perception of self-management needs. The participants in the intervention group reported that counselling by the ANP team helped motivate them to sustain physical activity. They also found it reassuring to have a contact person they could easily reach out to in case of any queries or uncertainties, which provided them with a sense of security. Conclusion: There is a need for support in several areas of self-management after hospitalization for AECOPD. The newly introduced nurse-led self-management support was immediately well-received. Indeed, all participants appreciated the contact with their respective health professionals. [ABSTRACT FROM AUTHOR]

AIMS OF THE STUDY: We know little about the level of physical activity, respiratory physiotherapy practices and nutritional status of people with primary ciliary dyskinesia (PCD), although these are important aspects of patients with chronic respiratory disease. We assessed physical activity, respiratory physiotherapy practices and nutritional status among people with primary ciliary dyskinesia in Switzerland, investigated how these vary by age and identified factors associated with regular physical activity. METHODS: We sent a postal questionnaire survey to people with primary ciliary dyskinesia enrolled in the Swiss PCD registry (CH-PCD), based on the standardised FOLLOW-PCD patient questionnaire. We collected information about physical activity, physiotherapy, respiratory symptoms and nutritional status. We calculated the metabolic equivalent (MET) to better reflect the intensity of the reported physical activities. To assess nutritional status, we extracted information from CH-PCD and calculated participants’ body mass index (BMI). RESULTS: Of the 86 questionnaires we sent, 74 (86% response rate) were returned from 24 children and 50 adults. The median age at survey completion was 23 years (IQR [interquartile range] 15–51), and 51% were female. Among all 74 participants, 48 (65%) performed sports regularly. Children were vigorously active (median MET 9.1; IQR 7.9–9.6) and adults were moderately active (median MET 5.5; IQR 4.3—6.9). Fifty-nine participants (80%) reported performing some type of respiratory physiotherapy. However, only 30% of adults saw a professional physiotherapist, compared with 75% of children. Half of the participants had normal BMI; one child (4%) and two adults (4%) were underweight. People who were regularly physically active reported seeing a physiotherapist more often. CONCLUSIONS: Our study is the first to provide patient-reported data about physical activity, respiratory physiotherapy and nutrition among people with primary ciliary dyskinesia. Our results highlight that professional respiratory physiotherapy, exercise recommendations and nutritional advice are often not implemented in the care of people with primary ciliary dyskinesia in Switzerland. Multidisciplinary care in specialised centres by teams including physiotherapists and nutrition consultants could improve the quality of life of people with primary ciliary dyskinesia.

(1) Background: Lung tissue involvement is frequently observed in acute COVID-19. However, it is unclear whether CT findings at follow-up are associated with persisting respiratory symptoms after initial mild or moderate infection. (2) Methods: Chest CTs of patients with persisting respiratory symptoms referred to the post-COVID-19 outpatient clinic were reassessed for parenchymal changes, and their potential association was evaluated. (3) Results: A total of 53 patients (31 female) with a mean (SD) age of 46 (13) years were included, of whom 89% had mild COVID-19. Median (quartiles) time from infection to CT was 139 (86, 189) days. Respiratory symptoms were dyspnea (79%), cough (42%), and thoracic pain (64%). Furthermore, 30 of 53 CTs showed very discrete and two CTs showed medium parenchymal abnormalities. No severe findings were observed. Mosaic attenuation (40%), ground glass opacity (2%), and fibrotic-like changes (25%) were recorded. No evidence for an association between persisting respiratory symptoms and chest CT findings was found. (4) Conclusions: More than half of the patients with initially mild or moderate infection showed findings on chest CT at follow-up. Respiratory symptoms, however, were not related to any chest CT finding. We, therefore, do not suggest routine chest CT follow-up in this patient group if no other indications are given.

BackgroundResearch integrating multisensory home-monitoring in respiratory disease is scarce. Therefore, we created a novel multisensory home-monitoring device tailored for long-term respiratory disease management (named the CAir-Desk). We hypothesize that recent technological accomplishments can be integrated into a multisensory participant-driven platform. We also believe that this platform could improve chronic disease management and be accessible to large groups at an acceptable cost. ObjectiveThis study aimed to report on user adherence and acceptance as well as system functionality of the CAir-Desk in a sample of participants with stable chronic obstructive pulmonary disease (COPD) or asthma. MethodsWe conducted an observational usability study. Participants took part in 4 weeks of home-monitoring with the CAir-Desk. The CAir-Desk recorded data from all participants on symptom burden, physical activity, spirometry, and environmental air quality; data on sputum production, and nocturnal cough were only recorded for participants who experienced symptoms. After the study period, participants reported on their perceptions of the usability of the monitoring device through a purpose-designed questionnaire. We used descriptive statistics and visualizations to display results. ResultsTen participants, 5 with COPD and 5 with asthma took part in this study. They completed symptom burden questionnaires on a median of 96% (25th percentile 14%, 75th percentile 96%), spirometry recordings on 55% (20%, 94%), wrist-worn physical activity recordings on 100% (97%, 100%), arm-worn physical activity recordings on 45% (13%, 63%), nocturnal cough recordings on 34% (9%, 54%), sputum recordings on 5% (3%, 12%), and environmental air quality recordings on 100% (99%, 100%) of the study days. The participants indicated that the measurements consumed a median of 13 (10, 15) min daily, and that they preferred the wrist-worn physical activity monitor to the arm-worn physical activity monitor. ConclusionsThe CAir-Desk showed favorable technical performance and was well-accepted by our sample of participants with stable COPD and asthma. The obtained insights were used in a redesign of the CAir-Desk, which is currently applied in a randomized controlled trial including an interventional program.

Thoracic aortic aneurysms (TAA) may be associated with complications such as rupture and dissection, which can lead to a fatal outcome. Increased central arterial stiffness has been proposed to be present in patients with TAA compared to unmatched controls. We aimed to assess whether wall properties in patients with TAA are also altered when compared to a matched control group. Applanation tonometry was performed in 74 adults with TAA and 74 sex, age, weight, height, and left ventricular ejection fraction matched controls. Subsequently analysis of the pulse wave was done using the SphygmoCor System. For comparing the two groups, AIx was adjusted to a heart rate of 75/min (AIx@75). 148 1-to-1 matched participants were included in the final model. There was no significant difference in the Alx@75 between the TAA group and the matched control group [mean (SD) of 24.7 (11.2) % and 22.8 (11.2) %, p = 0.240]. Adjusted for known cardiovascular risk factors, there was no association between TAA and AIx@75. Patients with TAA showed comparable arterial wall properties to cardiovascular risk factor matched controls. Since higher arterial stiffness is associated with TAA progression, it remains to be investigated if increased central arterial stiffness is a relevant factor of TAA emergence.

Background: We aimed to longitudinally monitor the recovery in breathlessness, symptom burden, health-related quality-of-life, and mental health status in individuals hospitalised due to SARS-CoV-2 associated respiratory failure.Methods: Individuals hospitalised due to SARS-CoV-2 associated respiratory failure were recruited at hospital discharge in three participating centres. During the 90 day follow-up, European Quality of Life−5 Dimensions−5 Levels Instrument (EQ-5D-5L), modified Medical Research Council (mMRC) Dyspnoea Scale, COPD Assessment Test (CAT), and weekly Hospital Anxiety and Depression Scale (HADS) questionnaires were assessed using a smartphone application. The results were presented using descriptive statistics and graphics. Linear mixed models with random intercept were fitted to analyse differences of intensive-care unit status on the recovery course in each outcome.Results: We included 58 participants, 40 completed the study. From hospital discharge until 90 days post-discharge, EQ-5D-5L index changed from 0.83 (0.66, 0.92) to 0.96 (0.82, 1.0), VAS rating on general health status changed from 62 (50, 75) % to 80 (74, 94) %, CAT changed from 13 (10, 21) to 7 (3, 11) points, mMRC changed from 1 (0, 2) to 0 (0, 1) points, HADS depression subscale changed from 6 (4, 9) to 5 (1, 6) points, HADS anxiety subscale changed from 7 (3, 9) to 2 (1, 8) points. Differences in the recovery courses were observed between intensive-care and ward participants. Participants that were admitted to an intensive-care unit during their hospitalisation (n = 16) showed increases in CAT, mMRC, HADS scores, and decreases in EQ-5D-5L 30 days after hospital discharge.Conclusion: Being admitted to an ICU led to statistically significant reductions in recovery in the EQ-5D-5L and the CAT. Furthermore, the flare-up in symptom burden and depression scores, accompanied by an attenuated recovery in HrQoL and general health status in the ICU-group suggests that a clinical follow-up 1 month after hospital discharge can be recommended, evaluating further treatments.Clinical Trial Registration: [www.ClinicalTrials.gov], identifier [NCT04365595].

Rationale and objectives Alpha-1 antitrypsin deficiency (AATD) is a genetic condition that leads to an increased risk of emphysema and liver disease. Despite extensive investigation, there remain unanswered questions concerning the natural history, pathophysiology, genetics and the prognosis of the lung disease in association with AATD. The European Alpha-1 Clinical Research Collaboration (EARCO) is designed to bring together researchers from European countries and to create a standardised database for the follow-up of patients with AATD. Study design and population The EARCO Registry is a non-interventional, multicentre, pan-European, longitudinal observational cohort study enrolling patients with AATD. Data will be collected prospectively without interference/modification of patient's management by the study team. The major inclusion criterion is diagnosed severe AATD, defined by an AAT serum level