Variability in access and referral to pulmonary rehabilitation in European bronchiectasis patients enrolled in the EMBARC registry

Walker, Paul; Herrero, Beatriz; Spinou, Arietta; Dimakou, Katerina; Blasi, Francesco; Ringshausen, FC; Soyza, Anthony De; Vendrell, Montserrat; Goeminne, Pieter; Boersma, Wim; Haworth, Charles; Murris, Marlène; Hill, Adam T.; Loebinger, Michael R.; Menéndez, Rosário; Torres, Antoni; Welte, Tobias; Wilson, Robert; Elborn, J.S.; Aliberti, Stefano; Chalmers, James D.; Polverino, Eva

doi:10.1183/13993003.congress-2018.oa5201

Cited by 4 publications

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“…At this year's Congress, several large real-life cohort studies were presented using data from EMBARC, a prospective dataset of more than 11 000 patients from more than 27 European countries. Marked heterogeneity in patient characteristics, management and outcomes were noted across different European countries, with significantly worse QoL, faster lung function decline and higher exacerbation frequency noted in Eastern Europe versus Western Europe, together with a significant between-country variability in access and referral to pulmonary rehabilitation [ 54 , 55 ]. Classification of patients with nontuberculous mycobacteria (NTM) and primary ciliary dyskinesia (PCD), conditions deserving of disease-specific guidelines outside of bronchiectasis, showed older age, female sex, higher MRC dyspnoea scores and bilateral involvement of the middle lobe and lingua to be independently associated with the development of NTM in bronchiectasis, whilst PCD patients were typically younger at presentation with increased disease severity compared to age and sex-matched patients with idiopathic disease or bronchiectasis secondary to immune deficiency [ 56 , 57 ].…”

Section: Bronchiectasismentioning

confidence: 99%

Research highlights from the 2018 European Respiratory Society International Congress: airway disease

et al. 2019

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The annual European Respiratory Society (ERS) International Congress (held in Paris in 2018) was once again a platform for discussion of the highest-quality scientific research, cutting-edge techniques and innovative new therapies within the respiratory field. This article discusses only some of the high-quality research studies presented at this year's Congress, with a particular focus on airway diseases including asthma, chronic obstructive pulmonary disease (COPD), bronchiectasis and cough, as presented through Assembly 5 of the ERS (Airway Diseases: Asthma and COPD). The authors establish the key take-home messages of these studies, compare their findings and place them in the context of current understanding.

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Section: Bronchiectasismentioning

confidence: 99%

Research highlights from the 2018 European Respiratory Society International Congress: airway disease

et al. 2019

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“…2,15 However, in practise many patients with bronchiectasis have been found not to participate in PR. [15][16][17][18] A 2015 Cochrane review reported low adherence to advised management strategies, including exercise, in patients with bronchiectasis, and a link between poor adherence and negative health outcomes. 16 The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) found experts and patients concurred that establishing accessible methods and increasing adherence to PR are priorities for research.…”

Section: Introductionmentioning

confidence: 99%

“…2 , 15 However, in practise many patients with bronchiectasis have been found not to participate in PR. 15 – 18 …”

Section: Introductionmentioning

confidence: 99%

‘The likes of me running and walking? No chance’: Exploring the perceptions of adult patients with bronchiectasis towards exercise

Royle

Kelly

2022

Chronic Illness

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Objective: To explore the views and experiences of adult patients with bronchiectasis towards exercise. Methods: Semi-structured interviews with ten patients with bronchiectasis were conducted to explore perceptions of exercise, potential barriers and facilitators of exercise. Inductive thematic analysis was used to identify key themes. Findings: Five main themes: 1. The language of exercise 2. Facilitators to exercise 3. Barriers to exercise 4. Exercise has a positive impact on health and life expectancy 5. Grief regarding loss of ability Discussion: Participants perceived exercise as positive, but there was variance regarding what this entailed. Findings suggest healthcare professionals should consider the language used when prescribing exercise and provide clarity for patients and reflect on their own role in advising on exercise. There were both common and differing barriers and facilitators to exercise between participants. Holistic needs and the identification of these potential barriers and facilitators to exercise could aid compliance. Further research is needed to explore generalisability and the effectiveness of behaviour change models to improve engagement with exercise.

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“…Preliminary data show that access to airway clearance techniques and pulmonary rehabilitation is highly variable in patients with bronchiectasis across Europe [35,36]. Bronchiectasis audits have also shown that implementation of the guidelines can be limited and even adherence to national standards of patient care is variable [37][38][39][40].…”

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Respiratory physiotherapy in the bronchiectasis guidelines: is there a loud voice we are yet to hear?

Spinou

Chalmers

2019

Eur Respir J

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]. Bronchiectasis is a chronic respiratory disease of airway dilatation, where patients typically suffer from respiratory infections, fatigue, sputum, cough, dyspnoea and poor quality of life [1, 2]. This condition has received increased interest over the past years, with important developments in establishing national and international patient registries [3-5], randomised controlled trials of new treatments [6-8] and disease-specific health status questionnaires, such as the Bronchiectasis Health Questionnaire and the Quality of Life Questionnaire-Bronchiectasis [9, 10]. A number of new treatment approaches have been proposed including long term antibiotic therapies and immune modulating drugs [6, 7, 11, 12]. Nevertheless the area of bronchiectasis care that has received the least attention during this period is the aspect of management that most healthcare professionals caring for bronchiectasis agree is the most important: airway clearance and exercise [13, 14]. The evidence base for respiratory physiotherapy has not advanced at the same pace as other aspects of bronchiectasis care [15]. To assist clinical decision-making, bronchiectasis guidelines synthesise, evaluate the evidence and provide recommendations for clinical practice, and a number of clinical guidelines in bronchiectasis have been published since 2008 (table 1). Although usually similar, guidelines can present some variability in their recommendations even for the same topic [16-21]. This is particularly the case for physiotherapy, because of the limited evidence on which to base guideline recommendations. The purpose of this editorial is to discuss the current state of play worldwide with regard to airway clearance and pulmonary rehabilitation and suggest the need to prioritise research into these topics.

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Variability in access and referral to pulmonary rehabilitation in European bronchiectasis patients enrolled in the EMBARC registry

Cited by 4 publications

References 0 publications

Research highlights from the 2018 European Respiratory Society International Congress: airway disease

Research highlights from the 2018 European Respiratory Society International Congress: airway disease

‘The likes of me running and walking? No chance’: Exploring the perceptions of adult patients with bronchiectasis towards exercise

Respiratory physiotherapy in the bronchiectasis guidelines: is there a loud voice we are yet to hear?

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