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BackgroundEvidence about the delays to diagnosis for patients presenting with breathlessness is lacking.AimTo explore current care of patients with breathlessness through the experiences of adults presenting with chronic breathlessness who are awaiting a diagnosis and the experiences of primary care clinicians.Design and settingQualitative study with adults presenting with chronic breathlessness and clinicians across 10 general practices.MethodSemi-structured interviews were conducted with patients and clinicians. Participants were recruited from a feasibility cluster randomised controlled trial investigating a structured diagnostic pathway for breathlessness. An interview guide explored experiences of help seeking for breathlessness, the diagnostic process, and associated health care. Transcripts were analysed using thematic analysis supported by NVivo software.ResultsInterviews were conducted with 34 patients (mean age 68 years, standard deviation [SD] 10.8, of whom 20 were female [59%]) and 10 clinicians (mean 17 years of experience, SD 6.3, of whom five were female [50%]). Five themes were identified: recognising and validating symptoms of breathlessness is an important first step; clinical decision making for breathlessness is complex; difficult conversations arise when a disease-related diagnosis is not confirmed; disease management rather than symptom management is prioritised by clinicians; and patient experience is influenced by clinician communication style.ConclusionThe findings indicate potential explanations for delays to diagnosis for patients with chronic breathlessness. Interventions are needed to enhance symptom recognition, include alternative approaches to incremental investigation, and expand the concept of diagnosis beyond a disease label to improve communication, with the ultimate aim of earlier diagnosis and management to improve patient outcomes.

During the COVID-19 pandemic, semi-structured interviews were undertaken with 20 adults awaiting a diagnosis for their chronic breathlessness. Three key themes were identified using thematic analysis: (1) de-prioritisation of diagnosis, (2) following UK ‘lockdown’ guidance for the general population but patients fearful they were more at risk, and (3) the impact of lockdown on coping strategies for managing breathlessness. The existing unpredictable pathway to diagnosis for those with chronic breathlessness has been further interrupted during the COVID-19 pandemic.

Background Currently, the acceptability and efficacy of pulmonary rehabilitation for adults with severe asthma is unknown. Objective To investigate the feasibility of performing a randomized controlled trial of asthma-tailored pulmonary rehabilitation (AT-PR) versus usual care (UC). Methods Adults with severe asthma were recruited and randomized 2:1 to AT-PR and UC. The primary outcomes were recruitment, retention, and serious adverse event rates. Secondary outcome measures included those for a future trial assessing the feasibility of collecting data. Assessments were performed at baseline, 12 weeks, and 9 months including measures of physical performance, health-related quality of life, and asthma control. A recruitment rate of 30% was estimated with 95% CI of ±7%, a retention rate of 75% ± 14% if we recruited 40 patients to AT-PR, and a serious adverse event rate of 2.5%. Results Sixty-one (26%) of 238 eligible patients were recruited (38 women; mean age, 54 ± 13 years; body mass index, 32 ± 7 kg/m2; FEV1, 1.9 ± 0.7 L; FEV1/forced vital capacity, 69% ± 11%). Fifty-one patients were randomized to AT-PR (n = 34) and UC (n = 17). The retention rate was 62% for the AT-PR group and 53% for the UC group, with a serious adverse event rate of 3.3% related to the study visits. Overall collection of the outcome measures was feasible. The results of the AT-PR group were suggestive of improvements in exercise performance, health-related quality of life, and asthma control, but the UC group results were either unchanged or worsened. Conclusions Both recruitment and retention rates were within the a priori estimated 95% CI. Our results indicate that AT-PR may be efficacious for adults with severe asthma but any future intervention and trial design would need further modifications to improve acceptability and retention rate.

Background/Aims The Self-management Programme of Activity Coping and Education (SPACE) for chronic obstructive pulmonary disease has been integrated into an online programme for patients to pursue at home with the support of health care professionals. This study aimed to identify barriers and facilitators to participation in the web-based programme and to guide further development of the website. Methods This nested qualitative study was part of a feasibility study comparing web-based rehabilitation with standard pulmonary rehabilitation. Framework analysis was performed to identify themes. Results Four overarching themes were identified: programme content and reported gains; embedding the programme into daily routines; barriers to participating in the programme; and support. These themes describe benefits of the programme including improved activity levels, exercise intensity and knowledge of the condition, as well as the incorporation of exercise into daily routine. Both completers and non-completers acknowledged the importance of motivation and self-discipline when following the programme and that the flexibility of the programme could help or hinder engagement. Support from healthcare professionals was important and used for encouragement, to obtain health advice and technical support. Conclusions The experiences of chronic obstructive pulmonary disease patients using this web-based rehabilitation programme illustrate how patients can benefit from such a resource and integrate it into their daily lifestyle.

IntroductionChronic breathlessness is a common and debilitating symptom, associated with high healthcare use and reduced quality of life. Challenges and delays in diagnosis for people with chronic breathlessness frequently occur, leading to delayed access to therapies. The overarching hypothesis is a symptom-based approach to diagnosis in primary care would lead to earlier diagnosis, and therefore earlier treatment and improved longer-term outcomes including health-related quality of life. This study aims to establish the feasibility of a multicentre cluster randomised controlled trial to assess the clinical and cost-effectiveness of a structured diagnostic pathway for breathlessness in primary care.Methods and analysisTen general practitioner (GP) practices across Leicester and Leicestershire will be cluster randomised to either a structured diagnostic pathway (intervention) or usual care. The structured diagnostic pathway includes a panel of investigations within 1 month. Usual care will proceed with patient care as per normal practice. Eligibility criteria include patients presenting with chronic breathlessness for the first time, who are over 40 years old and without a pre-existing diagnosis for their symptoms. An electronic template triggered at the point of consultation with the GP will aid opportunistic recruitment in primary care. The primary outcome for this feasibility study is recruitment rate. Secondary outcome measures, including time to diagnosis, will be collected to help inform outcomes for the future trial and to assess the impact of an earlier diagnosis. These will include symptoms, health-related quality of life, exercise capacity, measures of frailty, physical activity and healthcare utilisation. The study will include nested qualitative interviews with patients and healthcare staff to understand the feasibility outcomes, explore what is ‘usual care’ and the study experience.Ethics and disseminationThe Research Ethics Committee Nottingham 1 has provided ethical approval for this research study (REC Reference: 19/EM/0201). Results from the study will be disseminated by presentations at relevant meetings and conferences including British Thoracic Society and Primary Care Respiratory Society, as well as by peer-reviewed publications and through patient presentations and newsletters to patients, where available.Trial registration numberISRCTN14483247.

Introduction Following the outbreak of COVID-19, and the suspension of face to face activity, Pulmonary Rehabilitation (PR) services have had to think differently around service provision and alternative ways of delivery. Although there is wide variability in internet access and confidence by service users1, remote models of PR became a popular option. Methods SPACE for COPD® web programme was offered to PR services. Telephone or video training was provided by the SPACE for COPD team at UHL NHS trust. Clinical services were then set up to be able to give their patients access, monitor and progress them ‘remotely’ via the admin site. A staff survey was sent to services that signed up to use the web programme to understand their perceptions on using platform as part of their service. Results 191 enquiries were received in total (176 from the UK; 15 overseas); 73 clinical services were set up with over 600 patients accessing the on-line programme. Of the 24 survey responses, 91.7% of staff found the admin website user friendly. 16.7% had problems logging on to the admin site, but were resolved. 87.5% had no problems navigating the admin site. All staff found creating registration codes for patients easy to complete. 68.2% found the patient registration process easy to input and follow. 54.2% of staff said that patients found the website accessible and acceptable to use. 87% said that the walking and strength diaries were easy to input and navigate. 79.2% of staff stated that the remote training gave sufficient information and support when setting up SPACE for COPD. Discussion Over the last few months the uptake of SPACE FOR COPD shows there is a place and need for digital programmes. It has been an exciting opportunity to be able to share this and hopefully may even be an alternative option to offer patients in the future. Reference Polgar O., Aljishi M, Barker, et al. ( 2020). Digital habits of PR service-users: implications for home-based interventions during the COVID-19 pandemic. Chronic Respiratory Disease. https://doi.org/10.1177/1479973120936685

Background: Rehabilitation is a successful intervention for patients with pulmonary and cardiac disease. The interventions are usually provided as disease-specific programmes; yet their components are the same and both treat breathlessness symptoms. The aim of this study was to evaluate the effectiveness of a breathlessness rehabilitation programme. Methods: Patients attended rehabilitation twice/week for 6 weeks to complete education, aerobic and resistance exercises. Typical rehabilitation outcomes were collected pre and post the programme. Results: 99 patients (54.5% COPD, 17.1% Heart Failure, 28.4% other) went through the breathlessness programme in 8 months. 56 had complete pre-post data. 58% male, mean age 69.3 (SD11.5) years, BMI 29.9 (SD7.4). See table 1 for outcomes. Conclusions: The results show that patients had statistically and clinically significant improvements in typical rehabilitation outcomes: comparable with previous research and UK national audit data. The success of the breathlessness programme allows space to be released in the disease-specific classes which are better suited for patients with more complex needs.

The file attached to this record is the author's final peer reviewed version. The Publisher's final version can be found by following the DOI link. Background: The management of severe asthma poses many challenges related to treatment, adherence and psychosocial morbidity. There is little direct data from the patient perspective to understand and negotiate the complexities of managing severe asthma Objective: To explore the patient perceptions of living with severe asthma and the experience of managing severe asthma, in order to better understand the support that might promote more effective self-management for severe asthma. Methods: Participants were recruited from a specialist Difficult Asthma Service. Semi-structured interviews were conducted by researchers independent of the patient’s care. Interviews were transcribed verbatim and inductive Thematic Analysis was performed. Results: Twenty-nine participants [13 male, mean (SD) age 49.5 (13.6) years, mean Asthma Control Questionnaire 2.2 (1.2)] participated in an interview. Analysis resulted in four major themes describing the experience and challenges to managing severe asthma: Understanding of severe asthma, emotional impact of living with severe asthma (sub-theme: fear of hospitalisation), public perceptions of asthma, and concerns about medications. Conclusion: Healthcare professionals need to consider and discuss with patients their perceptions of severe asthma and the relevant treatments; particular attention should focus around education of disease control and actively exploring thoughts around hospitalisation. Our data highlights the potential for psychological and social support to enhance self-management by directly addressing the wide-ranging individual challenges patients face. There is also a need for greater public awareness and education about severe asthma to minimise patient distress particularly in the work environment.

Severe asthma is associated with a substantial burden of disease including premature death and reduced quality adjusted life years [1]. Care in specialist centres is associated with reduced exacerbation rates and healthcare utilisation, but at the cost of increased use of systemic steroids and increased body mass index (BMI) [2]. Common co-comorbidities such as metabolic syndrome and type 2 diabetes are associated with low levels of moderate-vigorous physical activity (MVPA) [3]. Guidelines recommend that adults accumulate either =150 minutes of moderate intensity activity or =75 minutes of vigorous intensity activity per week, accumulated in bouts of any length [4]. Adults with severe asthma may avoid MVPA due to negative expectations and fear-avoidance beliefs [5]. A few small studies have reported that daily step count and time spent in MVPA may be reduced in adults with severe asthma compared to controls [6–8]. However, results are conflicting when physical activity levels are adjusted for confounders such as age, gender, obesity and smoking [7]. Furthermore, adults with severe asthma have reduced health-related quality of life (HRQoL) but whether physical activity levels impact on HRQoL is unknown [9]. Footnotes This manuscript has recently been accepted for publication in the European Respiratory Journal . It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJ online. Please open or download the PDF to view this article. Conflict of interest: Dr. Neale reports grants from NIHR, during the conduct of the study. Conflict of interest: Dr. Orme reports grants from NIHR, during the conduct of the study. Conflict of interest: Dr. Majd reports grants from NIHR, during the conduct of the study. Conflict of interest: Mrs. Chantrell reports grants from NIHR, during the conduct of the study. Conflict of interest: Prof Singh reports grants from NIHR, during the conduct of the study. Dr. Singh reports grants from NIHR, during the conduct of the study. Conflict of interest: Dr. Bradding reports grants from NIHR, during the conduct of the study. Conflict of interest: Dr. Green reports grants from NIHR, during the conduct of the study. Conflict of interest: Dr. Evans reports grants from NIHR, during the conduct of the study.