European Respiratory Society clinical practice guideline on symptom management for adults with serious respiratory illness.

Respiratory symptoms are ubiquitous and impair health-related quality of life in people with respiratory disease. This European Respiratory Society (ERS) task force aimed to provide recommendations for symptomatic treatment in people with serious respiratory illness. The ERS task force comprised 16 members, including representatives of people with serious respiratory illness and informal caregivers. Seven questions were formulated, six in the PICO (Population, Intervention, Comparison, Outcome) format, which were addressed with full systematic reviews and evidence assessed using GRADE (Grading of Recommendations Assessment, Development and Evaluation). One question was addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. To treat symptoms in people with serious respiratory illness, the task force suggests the use of graded exercise therapy (conditional recommendation, low certainty of evidence); and suggests the use of a multicomponent services, handheld fan and breathing techniques (conditional recommendations, very low certainty of evidence). The task force suggests not to use opioids (conditional recommendation, very low certainty of evidence); and suggests either administering or not administering supplemental oxygen therapy (conditional recommendation, low certainty of evidence). The task force suggests that needs assessment tools may be used as part of a comprehensive needs assessment, but do not replace patient-centred care and shared decision making (conditional recommendation, low certainty of evidence). The low certainty of evidence, modest impact of interventions on patient-centred outcomes, and absence of effective strategies to ameliorate cough highlight the need for new approaches to reduce symptoms and enhance wellbeing for individuals who live with serious respiratory illness.

Optimising breathlessness triggered services for older people with advanced diseases: a multicentre economic study (OPTBreathe).

BACKGROUND: In advanced disease, breathlessness becomes severe, increasing health services use. Breathlessness triggered services demonstrate effectiveness in trials and meta-analyses but lack health economic assessment. METHODS: Our economic study included a discrete choice experiment (DCE), followed by a cost-effectiveness analysis modelling. The DCE comprised face-to-face interviews with older patients with chronic breathlessness and their carers across nine UK centres. Conditional logistic regression analysis of DCE data determined the preferences (or not, indicated by negative ß coefficients) for service attributes. Economic modelling estimated the costs and quality-adjusted life years (QALYs) over 5 years. FINDINGS: The DCE recruited 190 patients and 68 carers. Offering breathlessness services in person from general practitioner (GP) surgeries was not preferred (ß=-0.30, 95% CI -0.40 to -0.21); hospital outpatient clinics (0.16, 0.06 to 0.25) or via home visits (0.15, 0.06 to 0.24) were preferred. Inperson services with comprehensive treatment review (0.15, 0.07 to 0.21) and holistic support (0.19, 0.07 to 0.31) were preferred to those without. Cost-effectiveness analysis found the most and the least preferred models of breathlessness services were cost-effective compared with usual care. The most preferred service had £5719 lower costs (95% CI -6043 to 5395), with 0.004 (95% CI -0.003 to 0.011) QALY benefits per patient. Uptake was higher when attributes were tailored to individual preferences (86% vs 40%). CONCLUSION: Breathlessness services are cost-effective compared with usual care for health and social care, giving cost savings and better quality of life. Uptake of breathlessness services is higher when service attributes are individually tailored.

Predicting outcomes following holistic breathlessness services: A pooled analysis of individual patient data.

BACKGROUND: Holistic breathlessness services have been developed for people with advanced disease and chronic breathlessness, leading to improved psychological aspects of breathlessness and health. The extent to which patient characteristics influence outcomes is unclear. AIM: To identify patient characteristics predicting outcomes of mastery and distress due to breathlessness following holistic breathlessness services. DESIGN: Secondary analysis of pooled individual patient data from three clinical trials. Our primary analysis assessed predictors of clinically important improvements in Chronic Respiratory Questionnaire mastery scores (+0.5 point), and our secondary analysis predictors of improvements in Numerical Rating Scale distress due to breathlessness (-1 point). Variables significantly related to improvement in univariate models were considered in separate backwards stepwise logistic regression models. PARTICIPANTS: The dataset comprised 259 participants (118 female; mean (standard deviation) age 69.2 (10.6) years) with primary diagnoses of chronic obstructive pulmonary disease (49.8%), cancer (34.7%) and interstitial lung disease (10.4%). RESULTS: Controlling for age, sex and trial, baseline mastery remained the only significant independent predictor of improvement in mastery (odds ratio 0.57, 95% confidence intervals 0.43-0.74; p < 0.001), and baseline distress remained the only significant predictor of improvement in distress (odds ratio 1.64; 95% confidence intervals 1.35-2.03; p < 0.001). Baseline lung function, breathlessness severity, health status, mild anxiety and depression, and diagnosis did not predict outcomes. CONCLUSIONS: Outcomes of mastery and distress following holistic breathlessness services are influenced by baseline scores for these variables, and not by diagnosis, lung function or health status. Stratifying patients by levels of mastery and/or distress due to breathlessness appears appropriate for clinical trials and services.

Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation.

Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus survey. Stakeholders, representing multiple specialities and professions, and patient/carers were invited to participate. Thirty-seven participants attended the stakeholder workshop and generated 34 separate recommendations, rated by 74 online survey respondents. Seven recommendations had strong agreement and high levels of consensus. Stakeholders agreed services should be person-centred and flexible, should cut across multiple disciplines and providers and should prioritize breathlessness management in its own right. They advocated for wide geographical coverage and access to expert care, supported through skills-sharing among professionals. They also recommended recognition of informal carers and their role by clinicians and policymakers. Overall, stakeholders' recommendations reflect the need for improved access to person-centred, multi-professional care and support for carers to provide or access breathlessness management interventions. Future research should test the optimal models of care and educational strategies to meet these recommendations.

Which patients with advanced respiratory disease die in hospital? A 14-year population-based study of trends and associated factors.

BACKGROUND: Strategies in many countries have sought to improve palliative care and reduce hospital deaths for non-cancer patients, but their effects are not evaluated. We aimed to determine the trends and factors associated with dying in hospital in two common progressive respiratory diseases, and the impact of a national end of life care (EoLC) strategy to reduce deaths in hospital. METHODS: This population-based observational study linked death registration data for people in England dying from chronic obstructive pulmonary disease (COPD) or interstitial pulmonary diseases (IPD). We plotted age- and sex-standardised trends, assessed during the pre-strategy (2001-2004), first strategy phase (2004-2008), and strategy intensification (2009-2014) periods, and identified factors associated with hospital death using multiple adjusted proportion ratios (PRs). RESULTS: Over 14 years, 380,232 people died from COPD (334,520) or IPD (45,712). Deaths from COPD and IPD increased by 0.9% and 9.2% annually, respectively. Death in hospital was most common (67% COPD, 70% IPD). Dying in hospice was rare (0.9% COPD, 2.9% IPD). After a plateau in 2004-2005, hospital deaths fell (PRs 0.92-0.94). Co-morbidities and deprivation independently increased the chances of dying in hospital, with larger effects in IPD (PRs 1.01-1.55) than COPD (PRs 1.01-1.39) and dose-response gradients. The impact of multimorbidity increased over time; hospital deaths did not fall for people with two or more co-morbidities in COPD, nor one or more in IPD. Living in rural areas (PRs 0.94-0.94) or outside London (PRs, 0.89-0.98) reduced the chances of hospital death. In IPD, increased age reduced the likelihood of hospital death (PR 0.81, ≥ 85 versus ≤ 54 years); divergently, in COPD, being aged 65-74 years was associated with increased hospital deaths (PR 1.13, versus ≤ 54 years). The independent effects of sex and marital status differed for COPD versus IPD (PRs 0.89-1.04); in COPD, hospital death was associated with being married. CONCLUSIONS: The EoLC strategy appeared to have contributed to tangible reductions in hospital deaths, but did not reach people with multimorbidity and this gap widened over time. Integrating palliative care earlier in the disease trajectory especially in deprived areas and cities, and where multimorbidity is present, should be boosted, taking into account the different demographic factors in COPD and IPD.

Physiotherapy and Speech and Language therapy intervention for chronic cough.

There are few effective pharmacological therapies available to treat refractory chronic cough. Functional MRI studies of the brain have recently shown that patients with chronic cough have dysfunctional inhibitory control of cough. Self-management therapies delivered by physiotherapists or speech therapists are effective at suppressing cough. They enable patients to consciously suppress the urge to cough. The intervention consists of education, laryngeal hygiene, cough suppression and distraction measures and behaviour modification. The efficacy of Physiotherapy and Speech And Language Intervention (PSALTI) has been confirmed in two randomised control trials. In one trial, there was a 41% reduction in cough frequency with PSALTI, assessed objectively with the Leicester Cough Monitor, and a clinically significant improvement in quality of life. Importantly, the improvement in cough was sustained when therapy was discontinued. The addition of the Speech Pathology Treatment to neuromodulator drug therapy, Pregabalin has also been evaluated in a clinical trial. There was a clinically significant improvement in quality of life, and this was sustained when therapy was discontinued. The mechanism of action of PSALTI is not known and this should be investigated in future. Further studies are needed to identify the components of PSALTI that deliver the most benefit, and determine whether PSALTI is effective in cough associated with other chronic lung disorders.

Physiological markers of exercise capacity and lung disease severity in cystic fibrosis.

BACKGROUND AND OBJECTIVE: Peak aerobic capacity (VO2 peak) is an important outcome measure in cystic fibrosis (CF), but measurement is not widely available and can be influenced by patient motivation, pain and fatigue. Alternative markers of disease severity would be helpful. Neural respiratory drive, measured using parasternal intercostal muscle electromyography (EMGpara), reflects the load to capacity balance of the respiratory system and provides a composite measure of pulmonary function impairment in CF. The aim of the study was to investigate the relationship between exercise capacity, EMGpara and established measures of pulmonary function in clinically stable adult CF patients. METHODS: Twenty CF patients (12 males, median (range) age: 22.3 (17.0-43.1) years) performed the 10-m incremental shuttle walk test (ISWT) maximally with contemporaneous measures of aerobic metabolism. EMGpara was recorded from second intercostal space at rest and normalized using peak electromyogram activity obtained during maximum respiratory manoeuvres and expressed as EMGpara%max (EMGpara expressed as a percentage of maximum). RESULTS: VO2 peak was strongly correlated with ISWT distance (r = 0.864, P < 0.0001). Lung gas transfer (TL CO) % predicted was best correlated with VO2 peak (r = 0.842, P < 0.0001) and ISWT distance (r = 0.788, P < 0.0001). EMGpara%max also correlated with VO2 peak (-0.757, P < 0.0001), while the relationships between exercise outcome measures and forced expiratory volume in 1 s (FEV1 ) % predicted and forced vital capacity (FVC) % predicted were less strong. A TL CO% predicted of <70.5% was the strongest predictor of VO2 peak <32 mL/min/kg (area under the curve (AUC): 0.96, 100% sensitivity, 83.3% specificity). ISWT distance and EMGpara%max also performed well, with other pulmonary function variables demonstrating poorer predictive ability. CONCLUSION: TL CO% predicted and EMGpara%max relate strongly to exercise performance markers in CF and may provide alternative predictors of lung disease progression.

Breathlessness during daily activity: The psychometric properties of the London Chest Activity of Daily Living Scale in patients with advanced disease and refractory breathlessness.

BACKGROUND: The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease. AIM: To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease. DESIGN: A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale-symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches. SETTING/PARTICIPANTS: Breathless patients with advanced malignant and non-malignant disease. RESULTS: A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14-67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach's alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met. CONCLUSION: Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis.

BACKGROUND: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. AIMS: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. DESIGN: A cross-sectional secondary analysis of data from a randomised controlled trial. SETTING/PARTICIPANTS: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. RESULTS: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. CONCLUSION: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.

Patients' experiences of a new integrated breathlessness support service for patients with refractory breathlessness: Results of a postal survey.

BACKGROUND: We developed a new single point of access to integrated palliative care, respiratory medicine and physiotherapy: the breathlessness support service for patients with advanced disease and refractory breathlessness. This study aimed to describe patients' experiences of the service and identify the aspects valued. DESIGN: We attempted to survey all patients who had attended and completed the 6-week breathlessness support service intervention by sending them a postal questionnaire to self-complete covering experience, composition, effectiveness of the BSS and about participation in research. Data were analysed using descriptive statistics and thematic analysis of free text comments. RESULTS: Of the 70 postal questionnaires sent out, 25 (36%) returned. A total of 21 (84% (95% confidence interval: 69%-98%)) responding patients reported that they definitely found the breathlessness support service helpful and 13 (52% (95% confidence interval: 32%-72%)) rated the breathlessness support service as excellent. A total of 21 (84% (95% confidence interval: 69%-98%)) patients reported that the breathlessness support service helped with their management of their breathlessness along with additional symptoms and activities (e.g. mood and mobility). Four key themes were identified: (1) personalised care, (2) caring nature of the staff, (3) importance of patient education to empower patients and (4) effectiveness of context-specific breathlessness interventions. These were specific aspects that patients valued. CONCLUSION: Patients' satisfaction with the breathlessness support service was high, and identified as important to this was a combination of personalised care, nature of staff, education and empowerment, and use of specific interventions. These components would be important in any future breathlessness service.

What next in refractory breathlessness? Research questions for palliative care.

Refractory breathlessness is a common and distressing symptom among patients receiving palliative care. Improvements in the assessment and management of refractory breathlessness are dependent on further research. In this article, we have outlined research topics on which to base future work.

Illness perceptions, cognitive and behavioural responses to chronic breathlessness in individuals living with advanced respiratory disease: an observational study.

Background: Understanding the complexity and multidimensional nature of chronic breathlessness is key to its successful management. The aim of this study was to explore illness perceptions, cognitive and behavioural responses to chronic breathlessness in individuals living with advanced respiratory disease. Methods: This was a cross-sectional secondary analysis of data from a feasibility randomised control trial (SELF-BREATHE) for individuals living with chronic breathlessness due to advanced disease. All participants completed the following questionnaires: numerical rating scale (NRS) breathlessness severity, NRS distress due to breathlessness, NRS self-efficacy for managing breathlessness, Dyspnea-12 (D-12), Chronic Respiratory Disease Questionnaire (CRQ), Brief Illness Perception Questionnaire (Brief IPQ) and the Cognitive and Behavioural Responses Questionnaire, short version (CBRQ-S). The associations between the Brief IPQ and CBRQ-S with NRS breathlessness severity, distress and self-efficacy, D-12 and CRQ were examined using Spearman's rho correlation coefficient rs. A Spearman's rs of ≥0.50 was predefined as the threshold to denote important associations between variables. A p-value of <0.008 was considered statistically significant, to account for the number of comparisons performed. Results: The illness perception items consequences, identity, concern and emotional response were associated with increased breathlessness severity, increased distress, reduced breathlessness self-management ability and lower health-related quality of life. Symptom focusing and embarrassment avoidance were identified as important cognitive responses to chronic breathlessness. Conclusion: Interventions that directly target illness perceptions, cognitive and behavioural responses to chronic breathlessness may improve symptom burden, self-efficacy and health-related quality of life.

Neural respiratory drive measured during inspiratory threshold loading and acute hypercapnia in healthy individuals.

Understanding the effects of respiratory load on neural respiratory drive and respiratory pattern are key to understanding the regulation of load compensation in respiratory disease. The aim of the study was to examine and compare the recruitment pattern of the diaphragm and parasternal intercostal muscles when the respiratory system was loaded using two methods. Twelve subjects performed incremental inspiratory threshold loading up to 50% of their maximal inspiratory pressure, and 10 subjects underwent incremental, steady-state hypercapnia to a maximal inspired CO2 of 5%. The diaphragmatic electromyogram (EMGdi) was measured using a multipair oesophageal catheter, and the parasternal intercostal muscle EMG (sEMGpara) was recorded from bipolar surface electrodes positioned in the second intercostal space. The EMGdi and sEMGpara were analysed over the last minute of each increment of both protocols, normalized using the peak EMG recorded during maximal respiratory manoeuvres and expressed as EMG%max. The EMGdi%max and sEMGpara%max increased in parallel during the two loading methods, although EMGdi%max was consistently greater than sEMGpara%max in both conditions, inspiratory threshold loading [bias (SD) 9 (3)%, 95% limits of agreement 4-15%] and hypercapnia [bias (SD) 6 (3)%, 95% limits of agreement -0.05 to 12%]. Inspiratory threshold loading resulted in more pronounced increases in mean (SD) EMGdi%max [10 (7)-45 (28)%] and sEMGpara%max [5.3 (3.1)-40 (28)%] from baseline compared with EMGdi%max [7 (4)-21 (8)%] and sEMGpara%max [4.7 (2.3)-10 (4)%] during hypercapnia, despite comparable levels of ventilation. These data support the use of sEMGpara%max, as a non-invasive alternative to EMGdi%max recorded with an invasive oesophageal electrode catheter, for the quantification of neural respiratory drive. This technique should make evaluation of respiratory muscle function easier to undertake and therefore more readily acceptable in patients with respiratory disease, in whom transduction of neural respiratory drive to pressure generation can be compromised.

A randomised, controlled, feasibility trial of an online, self-guided breathlessness supportive intervention (SELF-BREATHE) for individuals with chronic breathlessness due to advanced disease.

Introduction: SELF-BREATHE is a complex, transdiagnostic, supportive, digital breathlessness intervention co-developed with patients. SELF-BREATHE seeks to build capacity and resilience within health services by improving the lives of people with chronic breathlessness using nonpharmacological, self-management approaches. This study aimed to determine whether SELF-BREATHE is feasible to deliver and acceptable to patients living with chronic breathlessness. Methods: A parallel, two-arm, single-blind, single-centre, randomised controlled, mixed-methods feasibility trial with participants allocated to 1) intervention group (SELF-BREATHE) or 2) control group (usual National Health Service (NHS) care). The setting was a large multisite NHS foundation trust in south-east London, UK. The participants were patients living with chronic breathlessness due to advanced malignant or nonmalignant disease(s). Participants were randomly allocated (1:1) to an online, self-guided, breathlessness supportive intervention (SELF-BREATHE) and usual care or usual care alone, over 6 weeks. The a priori progression criteria were ≥30% of eligible patients given an information sheet consented to participate; ≥60% of participants logged on and accessed SELF-BREATHE within 2 weeks; and ≥70% of patients reported the methodology and intervention as acceptable. Results: Between January 2021 and January 2022, 52 (47%) out of 110 eligible patients consented and were randomised. Of those randomised to SELF-BREATHE, 19 (73%) out of 26 logged on and used SELF-BREATHE for a mean±sd (range) 9±8 (1-33) times over 6 weeks. 36 (70%) of the 52 randomised participants completed and returned the end-of-study postal questionnaires. SELF-BREATHE users reported it to be acceptable. Post-intervention qualitative interviews demonstrated that SELF-BREATHE was acceptable and valued by users, improving breathlessness during daily life and at points of breathlessness crisis. Conclusion: These data support the feasibility of moving to a fully powered, randomised controlled efficacy trial with minor modifications to minimise missing data (i.e. multiple methods of data collection: face-to-face, telephone, video assessment and by post).

The clinical utility of the Breathing Pattern Assessment Tool (BPAT) to identify dysfunctional breathing (DB) in individuals living with postural orthostatic tachycardia syndrome (POTS).

BACKGROUND: Dysfunctional breathing (DB) resulting in inappropriate breathlessness is common in individuals living with postural orthostatic tachycardia syndrome (POTS). DB in POTS is complex, multifactorial, and not routinely assessed clinically outside of specialist centres. To date DB in POTS has been identified and diagnosed predominately via cardiopulmonary exercise testing (CPEX), hyperventilation provocation testing and/or specialist respiratory physiotherapy assessment. The Breathing Pattern Assessment Tool (BPAT) is a clinically validated diagnostic tool for DB in Asthma. There are, however, no published data regarding the use of the BPAT in POTS. The aim of this study was therefore to assess the potential clinic utility of the BPAT in the diagnosis of DB in individuals with POTS. METHODS: A retrospective observational cohort study of individuals with POTS referred to respiratory physiotherapy for formal assessment of DB. DB was determined by specialist respiratory physiotherapist assessment which included physical assessment of chest wall movement/breathing pattern. The BPAT and Nijgmegen questionnaire were also completed. Receiver operating characteristics (ROC) analysis was used to compare the physiotherapy assessment based diagnosis of DB to the BPAT score. RESULTS: Seventy-seven individuals with POTS [mean (sd) age 32 (11) years, 71 (92 %) female] were assessed by a specialist respiratory physiotherapist, with 65 (84 %) being diagnosed with DB. Using the established BPAT cut off of four or more, receiver operating characteristics (ROC) analysis indicated a sensitivity of 87 % and specificity of 75 % for diagnosing DB in individuals with POTS with an area under the curve (AUC) of 0.901 (95 % CI 0.803-0.999), demonstrating excellent discriminatory ability. CONCLUSION: BPAT has high sensitivity and moderate specificity for identifying DB in individuals living with POTS.

Measurement of parasternal intercostal electromyogram during an infective exacerbation in patients with cystic fibrosis.

The parasternal intercostal muscle electromyogram (sEMGpara) is a measure of neural respiratory drive and reflects lung disease severity in stable cystic fibrosis (CF). The aim of the study was to measure sEMGpara in acute infective exacerbations of CF and compare changes in sEMGpara with those in conventional lung function measures. 12 patients with CF admitted to hospital with an acute chest infection were studied. There was a significant reduction in mean ± SD sEMGpara (ΔsEMGpara -38 ± 19%, p<0.001) between admission and discharge. Spirometery also improved significantly from admission to discharge; Δforced expiratory volume in 1 s % predicted 39 ± 30%, p<0.001 and Δvital capacity % pred 22 ± 18%, p<0.001. sEMGpara has potential value as a nonvolitional measure of change in respiratory function in CF.

"You can do it yourself and you can do it at your convenience": internet accessibility and willingness of people with chronic breathlessness to use an internet-based breathlessness self-management intervention during the COVID-19 pandemic.

INTRODUCTION: The burden of chronic breathlessness on individuals, family, society and health systems is significant, and set to increase exponentially with population ageing, complex multimorbidity and coronavirus disease 2019 (COVID-19)-related disability. Breathlessness support services are effective; however, reach and access are limited. Delivering online breathlessness interventions may build capacity and resilience within health systems to tackle chronic breathlessness through supported self-management. The aim of this study was to explore accessibility and willingness of patients with chronic breathlessness to use an internet-based breathlessness self-management intervention (SELF-BREATHE). METHODS: Semi-structured telephone interviews were conducted with adults living with advanced malignant and non-malignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. RESULTS: 25 patients (COPD: n=13; lung cancer: n=8; interstitial lung disease (ILD): n=3; bronchiectasis: n=1) were interviewed: 17 male, median (range) age 70 (47-86) years and Medical Research Council dyspnoea score 3 (2-5). 21 patients had internet access. Participants described greater use, acceptance and normalisation of the internet since the advent of the COVID-19 pandemic. They described multifaceted internet use: functional, self-investment (improving health and wellbeing) and social. The concept of SELF-BREATHE was highly valued, and most participants with internet access were willing to use it. In addition to technical limitations, personal choice and perceived value of the internet were important factors that underpinned readiness to use online resources. CONCLUSION: These findings suggest that patients living with chronic breathlessness that have access to the internet would have the potential to benefit from the online SELF-BREATHE intervention, if given the opportunity.

"The whole of humanity has lungs, doesn't it? We are not all the same sort of people": patient preferences and choices for an online, self-guided chronic breathlessness supportive intervention: SELF-BREATHE.

Introduction: The burden of chronic breathlessness on individuals, family, society and health systems is significant and set to increase exponentially with an ageing population with complex multimorbidity, yet there is a lack of services. This has been further amplified by the coronavirus disease 2019 pandemic. Online breathlessness interventions have been proposed to fill this gap, but need development and evaluation based on patient preferences and choices. This study aimed to explore the preferences and choices of patients regarding the content of an online self-guided chronic breathlessness supportive intervention (SELF-BREATHE). Methods: Semi-structured telephone interviews were conducted with adults living with advanced malignant and nonmalignant disease and chronic breathlessness (July to November 2020). Interviews were analysed using conventional and summative content analysis. Results: 25 patients with advanced disease and chronic breathlessness (COPD n=13, lung cancer n=8, interstitial lung disease n=3, bronchiectasis n=1; 17 male; median (range) age 70 (47-86) years; median (range) Medical Research Council dyspnoea score 3 (2-5)) were interviewed. Individuals highlighted strong preferences for focused education, methods to increase self-motivation and engagement, interventions targeting breathing and physical function, software capability to personalise the content of SELF-BREATHE to make it more meaningful to the user, and aesthetically designed content using various communication methods including written, video and audio content. Furthermore, they identified the need to address motivation as a key potential determinant of the success of SELF-BREATHE. Conclusion: Our findings provide an essential foundation for future digital intervention development (SELF-BREATHE) and scaled research.

Neural respiratory drive, pulmonary mechanics and breathlessness in patients with cystic fibrosis.

BACKGROUND: Neural respiratory drive (NRD) measured from the diaphragm electromyogram (EMGdi) reflects the load/capacity balance of the respiratory muscle pump and is a marker of lung disease severity. EMGdi measurement is invasive, but recording the EMG from the parasternal intercostal muscles using surface electrodes (sEMGpara) could provide a non-invasive method of assessing NRD and disease severity. Objectives To test the hypothesis that NRD measured by sEMGpara correlates with EMGdi, to provide an index of disease severity in cystic fibrosis (CF) and to relate to exercise-induced breathlessness. METHODS: 15 patients with CF (mean forced expiratory volume in 1 s (FEV(1)) 53.5% predicted) and 15 age-matched healthy controls were studied. sEMGpara and EMGdi were recorded at rest and during exercise. sEMGpara was recorded using surface electrodes and EMGdi using a multipair oesophageal electrode catheter. Signals were normalised using the peak EMG recorded during maximum respiratory manoeuvres and expressed as EMG%max. The respiratory pattern, metabolic data, oesophageal and gastric pressures and Borg scores were also recorded. RESULTS: Mean (SD) resting sEMGpara%max and EMGdi%max were higher in patients with CF than in controls (13.1 (7)% and 18.5 (7.5)% vs 5.8 (3)% and 7.5 (2)%, respectively, p<0.001). In the patients with CF, resting sEMGpara%max and EMGdi%max were related to the degree of airways obstruction (FEV(1)) (r = -0.91 and r = -0.82, both p<0.001), hyperinflation (r = 0.63 and r = 0.56, both p<0.001) and dynamic lung compliance (r = -0.53 and r = -0.59, both p<0.001). During exercise, sEMGpara%max and EMGdi%max were strongly correlated with breathlessness in the patients with CF before (r = 0.906, p<0.001) and after (r = 0.975, p<0.001) the onset of neuromechanical dissociation. CONCLUSION: sEMGpara%max provides a non-invasive marker of neural drive, which reflects disease severity and exercise-induced breathlessness in CF.

Impact of fan therapy during exercise on breathlessness and recovery time in patients with COPD: a pilot randomised controlled crossover trial.

BACKGROUND: Patients with COPD reduce physical activity to avoid the onset of breathlessness. Fan therapy can reduce breathlessness at rest, but the efficacy of fan therapy during exercise remains unknown in this population. The aim of the present study was to investigate 1) the effect of fan therapy on exercise-induced breathlessness and post-exercise recovery time in patients with COPD and 2) the acceptability of fan therapy during exercise; and 3) to assess the reproducibility of any observed improvements in outcome measures. METHODS: A pilot single-centre, randomised, controlled, crossover open (nonmasked) trial (clinicaltrials.gov NCT03137524) of fan therapy versus no fan therapy during 6-min walk test (6MWT) in patients with COPD and a modified Medical Research Council (mMRC) dyspnoea score ≥2. Breathlessness intensity was quantified before and on termination of the 6MWT, using the numerical rating scale (NRS) (0-10). Post-exertional recovery time was measured, defined as the time taken to return to baseline NRS breathlessness score. Oxygen saturation and heart rate were measure pre- and post-6MWT. RESULTS: 14 patients with COPD completed the trial per protocol (four male, 10 female; median (interquartile range (IQR)) age 66.50 (60.75 to 73.50) years); mMRC dyspnoea 3 (2 to 3)). Fan therapy resulted in lower exercise-induced breathlessness (ΔNRS; Δ modified Borg scale) (within-individual differences in medians (WIDiM) -1.00, IQR -2.00 to -0.50; p<0.01; WIDiM -0.25, IQR -2.00 to 0.00; p=0.02), greater distance walked (metres) during the 6MWT (WIDiM 21.25, IQR 12.75 to 31.88; p<0.01), and improved post-exertional breathlessness (NRS) recovery time (WIDiM -10.00, IQR -78.75 to 50.00; p<0.01). Fan therapy was deemed to be acceptable by 92% of participants. CONCLUSION: Fan therapy was acceptable and provided symptomatic relief to patients with COPD during exercise. These data will inform larger pilot studies and efficacy studies of fan therapy during exercise.