What is important for people with nontuberculous mycobacterial disease? An EMBARC-ELF patient survey.

Patients' experiences of NTM pulmonary disease highlight important and unmet needs for better pharmacological treatment and education of medical staff https://bit.ly/3mjrlwh.

Patient participation in ERS guidelines and research projects: the EMBARC experience.

The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) is a European Respiratory Society (ERS) Clinical Research Collaboration dedicated to improving research and clinical care for people with bronchiectasis. EMBARC has created a European Bronchiectasis Registry, funded by the ERS and by the European Union (EU) Innovative Medicines Initiative Programme. From the outset, EMBARC had the ambition to be a patient-focussed project. In contrast to many respiratory diseases, however, there are no specific patient charities or European patient organisations for patients with bronchiectasis and no existing infrastructure for patient engagement. This article describes the experience of EMBARC and the European Lung Foundation in establishing a patient advisory group and then engaging this group in European guidelines, an international registry and a series of research studies. Patient involvement in research, clinical guidelines and educational activities is increasingly advocated and increasingly important. Genuine patient engagement can achieve a number of goals that are critical to the success of an EU project, including focussing activities on patient priorities, allowing patients to direct the clinical and research agenda, and dissemination of guidelines and research findings to patients and the general public. Here, we review lessons learned and provide guidance for future ERS task forces, EU-funded projects or clinical research collaborations that are considering patient involvement. EDUCATIONAL AIMS: To understand the different ways in which patients can contribute to clinical guidelines, research projects and educational activities.To understand the barriers and potential solutions to these barriers from a physician's perspective, in order to ensure meaningful patient involvement in clinical projects.To understand the barriers and potential solutions from a patient's perspective, in order to meaningfully involve patients in clinical projects.

European Respiratory Society guidelines for the management of adult bronchiectasis.

Bronchiectasis in adults is a chronic disorder associated with poor quality of life and frequent exacerbations in many patients. There have been no previous international guidelines.The European Respiratory Society guidelines for the management of adult bronchiectasis describe the appropriate investigation and treatment strategies determined by a systematic review of the literature.A multidisciplinary group representing respiratory medicine, microbiology, physiotherapy, thoracic surgery, primary care, methodology and patients considered the most relevant clinical questions (for both clinicians and patients) related to management of bronchiectasis. Nine key clinical questions were generated and a systematic review was conducted to identify published systematic reviews, randomised clinical trials and observational studies that answered these questions. We used the GRADE approach to define the quality of the evidence and the level of recommendations. The resulting guideline addresses the investigation of underlying causes of bronchiectasis, treatment of exacerbations, pathogen eradication, long term antibiotic treatment, anti-inflammatories, mucoactive drugs, bronchodilators, surgical treatment and respiratory physiotherapy.These recommendations can be used to benchmark quality of care for people with bronchiectasis across Europe and to improve outcomes.

Leading multiple teams: average and relative external leadership influences on team empowerment and effectiveness.

External leaders continue to be an important source of influence even when teams are empowered, but it is not always clear how they do so. Extending research on structurally empowered teams, we recognize that teams' external leaders are often responsible for multiple teams. We adopt a multilevel approach to model external leader influences at both the team level and the external leader level of analysis. In doing so, we distinguish the influence of general external leader behaviors (i.e., average external leadership) from those that are directed differently toward the teams that they lead (i.e., relative external leadership). Analysis of data collected from 451 individuals, in 101 teams, reporting to 25 external leaders, revealed that both relative and average external leadership related positively to team empowerment. In turn, team empowerment related positively to team performance and member job satisfaction. However, while the indirect effects were all positive, we found that relative external leadership was not directly related to team performance, and average external leadership evidenced a significant negative direct influence. Additionally, relative external leadership exhibited a significant direct positive influence on member job satisfaction as anticipated, whereas average external leadership did not. These findings attest to the value in distinguishing external leaders' behaviors that are exhibited consistently versus differentially across empowered teams. Implications and future directions for the study and management of external leaders overseeing multiple teams are discussed.

Empowerment and team effectiveness: an empirical test of an integrated model.

The authors developed a model of team empowerment as an emergent state linking inputs (I) with processes (P) and, thereby, with outcomes (O) in the context of an expanded team IPO framework. Using survey responses from 452 members of 121 empowered service technician teams, along with archival quantitative performance and customer satisfaction criteria, the authors tested the model using structural equation modeling techniques. The model was generally supported, although areas for improvement were evident. Specifically, empowerment partially mediated the influences of various inputs on team processes, whereas team processes fully mediated the influence of empowerment on outcomes. Directions for future research and application are discussed.