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BMJ Open Respiratory Research

BMJ

All preprints, ranked by how well they match BMJ Open Respiratory Research's content profile, based on 32 papers previously published here. The average preprint has a 0.03% match score for this journal, so anything above that is already an above-average fit. Older preprints may already have been published elsewhere.

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Characteristics and phenotypes of a COPD cohort in Uganda.

Alupo, P.; Mugenyi, L.; Katagira, W.; Kayongo, A.; Nalunjogi, J.; Siddharthan, T.; Hurst, J. R.; Kirenga, B.; Jones, R.

2023-05-15 respiratory medicine 10.1101/2023.05.11.23289559 medRxiv
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IntroductionChronic Obstructive Pulmonary Disease (COPD) is a heterogeneous condition with varied clinical and pathophysiologic characteristics. Although there is increasing evidence that COPD in low- and middle-income countries may have different clinical characteristics from that in high income countries, little is known about COPD phenotypes in these settings. We describe the clinical characteristics and risk factor profile of a COPD population in Uganda. MethodsWe cross sectionally analyzed the baseline clinical characteristics of 323 COPD patients aged 30 years and above who were attending two national referral outpatient facilities in Kampala, Uganda between July 2019 and March 2021. Logistic regression was used to determine factors associated with spirometric disease severity. ResultsThe median age was 62 years; 51.1% females; 93.5% scored CAT >10; 63.8% mMRC >2; 71.8% had wheezing; 16.7% HIV positive; 20.4% had a history of pulmonary tuberculosis; 50% with blood eosinophilic count >3%, 51.7% had 3 or more exacerbations in the past year. Greater severity by GOLD stage was inversely related to age, (aOR=0.95, 95%CI=0.92, 0.97), and obesity compared to underweight (aOR=0.25, 95%CI=0.07, 0.82). Regarding clinical factors, more severe airflow obstruction was associated with SPO2<93% (aOR=3.79, 95%CI=2.05, 7.00), mMMRC[&ge;]2 (aOR=2.21, 95%CI=1.08, 4.53), and a history of severe exacerbations (aOR=2.64, 95%CI=1.32, 5.26). ConclusionCOPD patients in this population had specific characteristics and risk factor profiles including HIV and TB meriting tailored preventative approaches. Further studies are needed to better understand the pathophysiological mechanisms at play and the therapeutic implications of these findings. Key messagesO_LIWhat is already known on this topic. COPD is a heterogeneous condition with the greatest burden in LMICs yet there is limited understanding of disease characteristics in this setting. C_LIO_LIWhat this study adds A cohort of patients with COPD recruited in hospital clinics in Uganda showed a high burden of disease with frequent exacerbations - 86% were GOLD category D. The cohort had a high exposure to biomass smoke and only 38% were past or present smokers. C_LIO_LIHow this study might affect research, practice, or policy There is need for more research into effective strategies to prevent and treat COPD in LMICs - it cannot be assumed that guidelines derived in high-income countries will apply. C_LI

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Clinical usage of non-invasive ventilation by physical therapists in cystic fibrosis centres across Australia: A cross-sectional survey study

Foxcroft, M. M.; Chambers, R.; Cobb, R.; Kuys, S.; Hall, K. A.

2021-07-06 respiratory medicine 10.1101/2021.06.30.21259429 medRxiv
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BACKGROUNDThis study investigated clinical usage of non-invasive ventilation during physical therapy for people with cystic fibrosis. Specific research questions were: What are the clinical indications, contraindications and patient selection criteria for non-invasive ventilation use as an adjunct to physical therapy in people with cystic fibrosis? 2. Who implements non-invasive ventilation, what settings are used and how are they determined? 3. What outcome measures are used to determine the effectiveness of non-invasive ventilation as an adjunct to physical therapy and what are the main benefits and complications? METHODSA purpose-designed survey was sent to 23 Australian cystic fibrosis centres. RESULTSFifteen centres (65%) responded, with 13 reporting current utilization of non-invasive ventilation to assist physical therapy. Non-invasive ventilation was most commonly (85%) used in patients with lung function <40% predicted. Physical therapy clinical indications included shortness of breath at rest (100%) and during airway clearance (100%), and fatigue during airway clearance (100%). Physical therapists were responsible for initiating non-invasive ventilation (62%), setting up (85%) and determining settings (62%). Bi-level ventilation was the only chosen ventilation mode. Benefits reported included improved ease of airway clearance (100%), reduced fatigue (92%) and decreased dyspnoea (85%). Only one complication of haemoptysis was reported. CONCLUSIONSNon-invasive ventilation was used during physical therapy in people with cystic fibrosis who had severe disease, mostly during airway clearance to improve tolerability of treatment. Australian physical therapists initiated non-invasive ventilation when people with cystic fibrosis experienced shortness of breath or fatigue during treatment, aligning with current clinical guidelines. Clinical usage was largely consistent across centres, with numerous benefits and few complications reported. Further research is required to explore benefits of non-invasive ventilation use during physical therapy.

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Perspectives and experiences of consumers and bicultural health educators on the diagnosis and management of asthma

Jayakody, M.; Rivas, E.; Nguyen, K. V.; Singh, S.; Tran, H.; Rasmussen, B.; Jayaram, L.

2025-06-18 respiratory medicine 10.1101/2025.06.15.25329655 medRxiv
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PurposeLack of access to culture-specific asthma care contributes to poor asthma outcomes in Culturally and Linguistically Diverse communities. A nurse-led asthma education programme incorporating Bicultural Health Educators to improve asthma outcomes was trialled in three of the communities most severely affected during a thunderstorm asthma event in West Melbourne, Victoria, Australia. This study aimed to uncover unique asthma management challenges affecting these communities. Patients and MethodsA total of 47 participants with asthma from Vietnamese, Sri Lankan, and Indian communities completed two asthma education sessions, six weeks apart, with an Asthma Nurse Educator supported by a Bicultural Health Educator. At the first session the participants participated in a questionnaire and a narrative interview in which they shared their views on their asthma healthcare journey. Bicultural Health Educators recorded responses to open questions about perspectives and experiences of their journey, which were coded and thematically analysed. ResultsKey factors impacting on asthma management from the consumer and Bicultural Health Educator perspective included limited knowledge of asthma, limited understanding of asthma management, difficulties with inhaler technique and difficulty navigating asthma care in the community. Culturally-driven attitudes towards asthma management, along with low educational literacy levels in some consumers also played a significant role. ConclusionThe study identified factors impacting on asthma management in the Sri Lankan, Indian and Vietnamese communities in West Melbourne. Incorporating these insights into the delivery asthma care and education might improve asthma outcomes in these populations.

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Regional Variations in Burden of Chronic Obstructive Pulmonary Disease

Mehareen, J.; Choy, K.; Yin, Y.; Sin, D. D.; Sadatsafavi, M.

2025-01-08 respiratory medicine 10.1101/2025.01.07.25320159 medRxiv
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BackgroundChronic Obstructive Pulmonary Disease (COPD) imposes a significant burden on individuals and communities. While differences in such burden are often studied across countries and healthcare systems, differences within jurisdictions have not been well evaluated. The aim of this study was to assess the trends of, and factors explaining, regional variability in the burden of COPD within a well-defined population with publicly funded healthcare system. MethodologyWe used population-based health records of people aged 35 years or older diagnosed with COPD across the 16 health regions of British Columbia, Canada (2010-2020). The primary outcomes were prevalence, incidence, all-cause hospital admissions, and all-cause mortality, while secondary outcomes were COPD- and cardiovascular disease (CVD)-specific hospitalization and mortality. We used generalized linear models to examine how outcomes varied by regions and changed over time, controlling for sex, age, socioeconomic status, and rural/urban residence. ResultsOver the 11-year study period, there were 312,014 individuals diagnosed with COPD (48.1% female, mean baseline age: 68.2 years). Across the province, standardized prevalence and all-cause mortality remained relatively stable during the study period, whereas incidence and all-cause hospitalization declined. There were up to a three-fold difference in standardized incidence and prevalence, and up to a two-fold difference in standardized all-cause hospitalization and mortality across regions (all p<0.05). These differences remained significant after controlling for case mix. Among COPD patients, both CVD-specific hospitalization and mortality were higher compared to COPD-specific hospitalization and mortality. ConclusionDespite being governed by the same universal healthcare system, difference in burden of COPD across geographic regions in this Canadian province was significant. Heterogeneity was more prominent in incidence and prevalence, compared with hospitalization and mortality, suggesting that the variation in the process of care leading to diagnosis is more substantial than variation in COPD outcomes.

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Interstitial Lung Disease Fatigue & Breathlessness (ILD-FAB) Programme: A multidisciplinary feasibility study

Mandizha, J.; Davies, R.; Crook, C.; Duckworth, A.; Gibbons, M. A.; Lanario, J. W.; Lines, S.; Moss, J.; Taylor, K.; Russell, A.-M.

2025-06-12 respiratory medicine 10.1101/2025.06.10.25329329 medRxiv
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BackgroundFatigue, breathlessness and cough are prevalent symptoms of Interstitial Lung Disease (ILD) adversely impacting quality-of-life and contributing to psychological distress. The Fatigue and Breathlessness (FAB) programme facilitates supported self-management for people living with life-limiting conditions such as cancer. We explore its utility when adapted for people living with ILD. MethodsThe 4-week ILD-FAB programme offers each group of up to 6 participants weekly two-hour sessions led by an ILD-specialist Physiotherapist and Clinical Nurse Specialist (CNS). Primary focus is on strategies to manage breathlessness, fatigue and wellbeing. Further, a 1:1 session with the ILD-CNS enables participants to set personalised goals and explore individual health beliefs/behaviours using a Cognitive Behavioural Therapy (CBT) assessment framework. The self-reporting Chronic Respiratory Questionnaire (CRQ-SR) evaluates breathlessness, fatigue, emotional function and mastery at baseline and after 4 weeks. We facilitated eleven groups between March 2023 and December 2024. ResultsForty-nine participants (26 male; median age 76 years [IQR=14]) were diagnosed with Idiopathic Pulmonary Fibrosis/IPF (n=21), Progressive Pulmonary Fibrosis/PPF (n=17) or non-progressive ILD (n=11) of various aetiologies. Lung function indicated a range of disease severity (FVC % predicted median: 70% [IQR=34]) Thirty-seven (76%) participants attended all four sessions, 6 (12%) attended three sessions, 2 (4%) attended two sessions and 4 (8%) attended one session. Thirty-seven patients, all who attended at least 3 sessions, completed the CRQ-SR at baseline and Week 4. Fifty-nine percent of respondents (n=22) demonstrated clinically significant improvements in dyspnoea scores, 51% (n=19) in emotional functioning scores and 49% (n=18) in fatigue and mastery scores. Thirty-five respondents (95%) demonstrated a clinically significant improvement in at least one domain. All participants (100%) would recommend this programme to others. ConclusionThese data demonstrate feasibility, acceptability and clinical effectiveness of an ILD-specific FAB programme. Further research will explore a range of outcome measures longitudinally in a larger cohort. Key MessagesO_LIWhat is already known on this topic -The FAB programme is delivered in hospices and NHS trusts UK-wide to improve confidence in fatigue and breathlessness management and reduce anxiety for people living with life-limiting illnesses such as cancer. Formal evaluations are positive but limited by small sample sizes and the use of non-validated outcome measures. C_LIO_LIWhat this study adds -Our FAB programme, adapted for people with ILD, is feasible, acceptable and clinically effective. C_LIO_LIHow this study might affect research, practice or policy - The FAB programme offers one multimodal approach to improving self-management in people with ILD. Further research in a larger, more heterogeneous patient population will optimise outcome measures, broaden acceptability and determine cost-effectiveness. C_LI

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Mapping the common barriers to optimal COPD care in high and middle-income countries: qualitative perspectives from clinicians

Shahaj, O.; Meiwald, A.; Puri Sudhir, K.; Gara-Adams, R.; Wark, P.; Cazaux, A.; Elizondo Rios, A.; Avdeev, S.; Adams, E. J.

2023-11-13 respiratory medicine 10.1101/2023.11.13.23298474 medRxiv
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BackgroundAlthough predominantly preventable and treatable, chronic obstructive pulmonary disease (COPD) is a leading cause of death globally. Guidelines for managing the condition are widely available, yet COPD care remains suboptimal in many settings, including high and middle-income countries (HICs and MICs). Several approaches are used to diagnose and manage COPD, resulting in substantial variation in its care pathways. This study aimed to explore how barriers to optimal COPD care vary across HICs and MICs by identifying common and unique barriers to COPD care in six countries to inform global policy initiatives for better care while addressing specific challenges. MethodsBased on international and national guidelines, we mapped COPD care pathways for Australia, Spain, Taiwan, Argentina, Mexico, and Russia. Country-specific pathways were populated with published epidemiological, health economic, and clinical data identified through a pragmatic literature review. Semi-structured interviews with 17 respiratory care clinicians further informed and validated the pathways, data inputs, and key issues arising in each country. Thematic content analysis was used to analyse common and unique barriers across countries. ResultsSix themes were common in most HICs and MICs: "Challenges in COPD diagnosis", "Strengthening the role of primary care", "Fragmented healthcare systems and coordination challenges", "Inadequate management of COPD exacerbations"; "Limited access to specialised care" and, "Impact of underfinanced and overloaded healthcare systems". One theme, "Insurance coverage and reimbursement challenges", was more relevant for MICs. HICs and MICs differ in patient and healthcare provider awareness, primary care involvement, spirometry access, and specialised care availability. Both face issues with healthcare fragmentation, guideline adherence, and COPD exacerbation management. MICs also grapple with resource limitations and healthcare infrastructure challenges. ConclusionMany challenges to COPD care are the same in both HICs and MICs, underscoring the pervasive nature of these issues. While country-specific issues require customised solutions, there are untapped possibilities for implementing global respiratory strategies that motivate countries to manage COPD effectively. In addition to healthcare system-level initiatives, there is a crucial need for political prioritisation of COPD to secure the essential resources it requires.

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Assessing Causal Relationships Between Diabetes Mellitus and Idiopathic Pulmonary Fibrosis

Moss, S. T.; Minelli, C.; Leavy, O. C.; Allen, R. J.; Oliver, N.; Wain, L. V.; Jenkins, R. G.; Stewart, I.

2024-01-04 respiratory medicine 10.1101/2024.01.04.24300827 medRxiv
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RationaleIdiopathic Pulmonary Fibrosis (IPF) is a disease of progressive lung scarring. There is a known association between IPF and diabetes mellitus (DM), but it is unclear whether this association is due to causal relationships between these traits. ObjectivesTo examine causal relationships between DM, diabetes-associated traits, and IPF using a Mendelian randomisation approach. MethodsFollowing a two-sample Mendelian randomisation (MR) approach, we used genetic variants identified from genome wide association studies (GWAS) for type 1 diabetes (T1D), type 2 diabetes (T2D), glycated haemoglobin level (HbA1c), fasting insulin level, and body mass index (BMI) to assess for evidence of causal effects of these traits on IPF risk. Further analyses using pleiotropy-robust and multivariable MR methods were performed to account for the inherent complexity of the traits being investigated. ResultsResults did not suggest that either T1D (OR = 1.00, 95% CI: 0.93-1.07, p = 0.902) or T2D (OR = 1.02, 95% CI: 0.93-1.11, p = 0.692) are in the causal pathway of IPF. No significant effects were suggested of HbA1c (OR = 1.19, 95% CI: 0.63-2.22, p = 0.592) or fasting insulin level (OR = 0.60, 95% CI: 0.31-1.15, p = 0.124) on IPF risk, but effects of BMI on IPF risk were indicated (OR = 1.44, 95% CI: 1.12-1.85, p = 0.004). ConclusionThis study suggests that DM and IPF are unlikely to be causally linked. This comorbid relationship may instead be driven by shared risk factors or treatment effects. Key messagesWhat is already known on this topic: Idiopathic pulmonary fibrosis is associated with diabetes mellitus epidemiologically, but it is unclear if these traits are linked by causal effects. What this study adds: Idiopathic pulmonary fibrosis and diabetes mellitus are unlikely to be causally linked, suggesting that shared environmental risk factors or treatment effects may drive this comorbid relationship. How this study might affect research, practice, or policy: Further research investigating the relationship between diabetes mellitus and idiopathic pulmonary fibrosis should focus on potential shared risk factors such as smoking, and treatment effects including corticosteroid use.

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Overdiagnosis and treatment of COPD in nonagenarians

Tole, M.; Ascoli, C.; Joo, M.; Rubinstein, I.

2022-01-21 respiratory medicine 10.1101/2022.01.21.22269644 medRxiv
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BackgroundThe prevalence of COPD is increasing with age. However, the effects of age-dependent decline in lung function on diagnosis and treatment of COPD in nonagenarians are uncertain. ObjectivesTo determine performance of spirometry, prescription of COPD medications, and COPD-related acute care visits and hospitalizations in patients 90 years and older with physician-diagnosed COPD. MethodsHealth records of 166 consecutive patients 90 years and older with physician-diagnosed COPD at a university-affiliated medical center in Chicago were reviewed. Pertinent demographic, clinical, and physiological data were extracted. ResultsPatients were predominantly ex-smoker (96%), African American (52%) males (96%). Sixty patients (36%) had no spirometry testing on record. Of the remaining 106 patients, 11 (10%) had baseline FEV1/FVC[&ge;]0.70, 24 (23%) had post-bronchodilator FEV1/FVC [&ge;]0.70, 28 (26%) had FEV1/FVC <0.70 and [&ge;]LLN, and 43 (41%) had FEV1/FVC <0.70 and <LLN. Thus, only 71 of 166 patients 90 years and older (43%) fulfilled the Global Initiative for Chronic Obstructive Lung Disease (GOLD) recommendations. Nonetheless, COPD medications, predominantly short-acting {beta}2 agonists and long-acting muscarinic antagonists, were prescribed to 95 of the 166 patients (57%). No significant differences in prevalence of co-morbidities and prescribed COPD medications, including systemic corticosteroids and anti-infectives prescribed during unscheduled healthcare visits and hospitalizations, were found between the four groups. ConclusionsThese data suggest that a large proportion of nonagenarians at our medical center are overdiagnosed with and treated for COPD. A larger, multi-center, prospective study is warranted to support or refute these retrospective observations.

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Chronic respiratory symptoms and chronic obstructive pulmonary disease following completion of pulmonary tuberculosis treatment in Uganda

Namusobya, M. S.; Bongomin, F.; Mukisa, J.; Kimuli, I.; Ddungu, A.; Batte, C.; Kirenga, B. J.

2023-09-18 respiratory medicine 10.1101/2023.09.17.23295686 medRxiv
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BackgroundPrior pulmonary tuberculosis (PTB) is associated with chronic lung impairment, including chronic obstructive pulmonary disease (COPD). We determined the prevalence and associations of chronic respiratory symptoms and COPD following completion of PTB treatment in Uganda. MethodsBetween August 2022 and December 2022, we consecutively enrolled post-PTB patients who had successfully completed PTB treatment between January 2016 and January 2020 at Mulago National Referral Hospital, Kampala, Uganda. Chronic respiratory symptoms were defined as the presence of at least one of the following symptoms lasting for at least three months within a year: cough or sputum production, shortness of breath, chest pain, or wheezing, along with an FEV1/FVC < 0.70 on spirometry for the definition of COPD. ResultsWe enrolled 326 participants (median age 36 years; IQR: 30 -- 43), 182 (55.8%) were male, and 123 (37.7%) were living with HIV. Fifty-one (15.6%) participants had chronic respiratory symptoms, 5 (9.8%) having COPD; 4 GOLD I and 1 GOLD II. Chronic respiratory symptoms were 89% lower among participants whose PTB treatment outcome was "completed" (adjusted Odds Ratio (aOR): 0.11, 95% confidence interval (CI): 0.01 - 0.87, p<0.01) and they were 74% lower among those with alcohol use disorders (aOR: 0.26, 95% CI: 0.12 - 0.57, p <0.001). Non-HIV immunosuppressive conditions such as diabetes mellitus and chronic steroid use, were significantly associated with both chronic respiratory symptoms (aOR:7.72, 95% CI 3.13 - 19.04, p<0.001) and COPD (aOR: 8.42, 95% CI: 1.32 -- 53.47, p=0.024). ConclusionChronic pulmonary symptoms, including COPD, are important and yet under recognized complications of PTB treatment in Uganda. Therefore, screening and management in key sub-groups, such as those with immunosuppressive condition, will improve morbidity and quality of life in this population.

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Real world evidence of acute interstitial lung disease-related hospital admissions infers complex, multifactorial association between social deprivation and 90-day all-cause mortality outcomes: data from the North West of England.

White, L. J.; Shaw, J.; Powell, B.; May Kyi, N.; Sou, A.; Hughes, G.; Tilakaratne, D.; Hayton, C.; Raj, T.; Truong, V.; Ismail, N.; Khaijoun, N.; Huang, R.; Hardy, E.; Babar, M.; Khan, N.; Regan, M.; Okpala, O.; Suresh, R.; McIntosh, J.; Amjad, A.; Sohail, M.; Aslam, Z.; Gadoud, A.; Gatheral, T.; NgManKwong, G.

2026-03-13 respiratory medicine 10.64898/2026.03.12.26348240 medRxiv
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BackgroundSocial deprivation impacts chronic disease and acute admission outcomes. In interstitial lung disease (ILD), prior British Thoracic Society registry data for idiopathic pulmonary fibrosis has shown high deprivation was associated with poorer long-term outcomes. However, its impact on acute admissions in ILD is not known. MethodsWe undertook a multicentre, retrospective study of ILD-related admissions between 1st January 2017 and 31st December 2019 across 11 hospitals in the North West of England, utilising available real-world data. We determined social deprivation geographically by the 2019 English Indices of Deprivation deciles. The primary outcome was 90-day all-cause mortality. Results999 admissions met the inclusion criteria. 327/999 (32.7%) of admissions came from individuals geographically in the most deprived 20%. Across 999 admissions, in unadjusted survival analysis we observed a non-linear relationship between deprivation and 90-day all-cause mortality. In complete case multivariate modelling, deprivation demonstrated borderline significant association with all-cause mortality (HR 1.038, 95% CI 1.00 - 1.077, p = 0.050). However, this effect was lost in pooled analysis using multiple imputation (HR 1.001, 95% CI 0.971 - 1.033, p = 0.928). Male sex and pre-admission long-term oxygen were consistently associated with increased 90-day all-cause mortality across both models. Lower TLCO values were significantly associated with increased 90-day mortality in pooled analysis. ConclusionWe observe a high burden of acute ILD-related hospital admission amongst the most deprived 20%, suggesting geographical deprivation may impact acute healthcare seeking behaviours. Once admitted, the impact of deprivation appears more complex and multifactorial. Further studies which assess geographical and individual-level deprivation are needed to validate our findings. Key Messages What is already known on the topic?The British Thoracic Society idiopathic pulmonary fibrosis registry has previously demonstrated that higher social deprivation is associated with worse long-term outcomes. In other respiratory diseases, social deprivation impacts acute admission patterns and outcomes. What this study addsTo the best of our knowledge, this is the first study examining the relationship between social deprivation and acute ILD-related admission outcomes. This study demonstrates high acute admission burden from the geographically most deprived 20%. Once admitted, the association between geographical social deprivation and mortality outcomes appears complex and multifactorial in our modelling. How this may affect research, practice or policyThis study highlights the acute admission burden from highly deprived communities and the need for additional research to further understand the individual-level and geographical-level deprivation patients with ILD experience. We suggest the need for community outreach to build trust with deprived communities, alongside increasing awareness amongst patients, caregivers and primary care physicians in such communities. Deprivation must remain an important consideration in any new service or intervention to prevent worsening of health inequalities.

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The Impact of Pulmonary Fibrosis on Sex and Sexual Function, A Multinational Mixed Methods Study

Avitzur, N.; Knaub, M.; Thornton-Wood, F.; Johnson, S. R.; Ryerson, C. J.; Jenkins, R. G.; Stewart, I.; Johannson, K. A.

2024-10-02 respiratory medicine 10.1101/2024.09.29.24314583 medRxiv
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BackgroundSex is an important part of life for many adults, yet sexual function may be impacted by chronic respiratory diseases such as pulmonary fibrosis (PF). This multinational study sought to characterize the impact of PF on sex and sexual function, using mixed quantitative and qualitative methodology. MethodsPatients were retrospectively included from a prospective registry and prospective clinical cohort if they had completed UCSD-SOBQ or SPARC questionnaire, respectively. An online multi-lingual survey used the Changes in Sexual Function Questionnaire (CSFQ) to assess sexual dysfunction, and qualitative evaluation of individual patient interviews was conducted using thematic analysis. ResultsDyspnea with sexual activity affected 2,054/2,759 (74%) of registry patients, associated with male sex, lower FVC%, lower DLCO%, and worse cough. Distress due to the effect of PF on their sex life was reported in 52/225 (23%) of the clinical cohort, associated with younger age, male sex, lower DLCO%, and worse cough. Sexual dysfunction was common, affecting 56/67 (83%) of female and 63/73 (86%) male survey respondents. Qualitative analysis of patient interviews identified several themes including sex life limitations, changes in inter-personal relationships, quality of life, and emotions. All patients wanted to discuss sex with trusted healthcare providers. ConclusionIn this multinational study, patients with PF reported engaging in sex and sexual activities but were adversely impacted by the effect of PF on sex life, with both physical and psychological limitations. Sexual dysfunction was common, driven by multiple disease domains. Sexual health appears to be an important component of comprehensive patient care. FundingThe Canadian Registry for Pulmonary Fibrosis is sponsored by Boehringer Ingelheim, but had no input on any aspect of this study.

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Being responsible for COPD - lung disease as a manifestation of structural violence.

Williams, P. J.; Buttery, S. C.; Laverty, A. A.; Hopkinson, N. S.

2023-09-08 respiratory medicine 10.1101/2023.09.06.23295021 medRxiv
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Lung health, the development of lung disease, and how well a person with lung disease is able to live, all depend on a wide range of societal factors. Considering COPD as a manifestation of structural violence, something that continues to be done to people, despite it being largely preventable, makes the causal processes more apparent and the responsibility to interrupt or alleviate these clearer. We developed a taxonomy to describe this, containing five domains. 1)Avoidable lung harms: (i)processes impacting on lung development (ii)processes which disadvantage lung health in particular groups across the life course. 2)Diagnostic Delay: (i)healthcare factors (ii)norms and attitudes that mean that COPD is not diagnosed in a timely way, denying people with COPD effective treatment. 3)Inadequate COPD Care: ways in which the provision of care for people with COPD falls short of what is needed to ensure that they are able to enjoy the best possible health, considered as (i)healthcare resource allocation (ii)norms and attitudes influencing clinical practice. 4)Low status of COPD: ways in which both COPD as a condition and people with COPD are held in less regard and considered less of a priority than other comparable health problems. 5)Lack of Support: factors that make living with COPD more difficult than it should be (i)socioenvironmental factors (ii)factors that promote social isolation. This model has relevance for policymakers, healthcare professionals and the public as an educational resource, to change clinical practices and priorities and to stimulate advocacy and activism with the goal of the elimination of COPD.

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Telerehabilitation services have declined post-COVID-19

May, A. K.; Holland, A. E.; Alison, J. A.; Herrmann, K.; Cox, N. S.

2024-07-24 respiratory medicine 10.1101/2024.07.22.24310787 medRxiv
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ObjectiveTo characterize Pulmonary rehabilitation (PR) service delivery, investigate the impact of the pandemic on PR services, and describe centre-based PR (CBPR) and telerehabilitation with reference to PR essential components. DesignOnline national cross-sectional survey. SettingAustralian PR services. ParticipantsRepresentatives of PR programs listed within the Lung Foundation Australia national database (n=295). InterventionsNot applicable. Main Outcome Measure(s)Availability of PR in CBPR and telerehabilitation settings. Results97% of Australian PR services (n=114/117) delivered CBPR, similarly to pre-COVID-19 pandemic availability (96%). 43% (n=50/116) of services delivered telerehabilitation, which was significantly less than availability during COVID-19 restrictions (74%; p<0.001). CBPR was primarily delivered in a group setting (99%; median (IQR) 7 (6-8) participants/group), and telerehabilitation primarily via individual telephone calls (94%). 39% of respondents report CBPR group size has reduced. PR essential components of initial centre-based assessments and individually prescribed/progressed endurance and resistance training were achieved by most CBPR and telerehabilitation programs. Staff training in delivery of telerehabilitation models was undertaken in 33% of services. ConclusionsPR essential components are generally met in current Australian programs. However, telerehabilitation services and CBPR program capacity have declined indicating reduced program capacity. Sustainability of effective PR programs is required to support access for people with chronic respiratory diseases.

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International stakeholder engagement on clinical care and research for nocturnal hypoxaemia in pulmonary fibrosis

Dowman, L.; Landry, S.; Smallwood, N.; Moor, C.; Edwards, B.; Ryerson, C.; McDonald, C.; Goh, N.; Patsamanis, H.; Cochrane, L.; Joosten, S.; Wijsenbeek, M.; Ekstrom, M.; Moreno, S.; Hepworth, G.; Holland, A.; Khor, Y. H.

2025-04-19 respiratory medicine 10.1101/2025.04.14.25325780 medRxiv
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BackgroundNocturnal hypoxaemia is common in people with pulmonary fibrosis (PF). This study aimed to explore current practice and establish global perspective on research priorities and outcome measures of importance in sleep assessment and treatment of nocturnal hypoxaemia for PF. MethodsPeople with PF, as well as healthcare professionals (HCPs) including clinicians and researchers with expertise in PF, sleep medicine, and oxygen therapy, were recruited internationally to participate in a mixed-methods online survey followed by online focus groups. ResultsA total of 68 people with PF and 73 HCPs from 29 countries completed the survey, with 14 and 36 joining the focus groups, respectively. 51% of patients had previous sleep assessment, with 75% of the remaining expressing its need as part of the disease assessment for PF. 64% of HCPs performed sleep assessments routinely or as clinically indicated, with 82% indicating the assessment being very or somewhat important. The top research priority from people with PF and HCPs was treatment effects of nocturnal hypoxaemia on symptom burden (including health-related quality of life [HRQoL]). Other key research priorities identified were safety and tolerability of nocturnal oxygen therapy, treatment effects of nocturnal hypoxaemia on mortality and pulmonary hypertension, diagnostic approaches for assessing sleep and nocturnal hypoxaemia, predictors of nocturnal hypoxaemia, developing a user-friendly oxygen therapy device, and patient awareness of the significance of nocturnal hypoxaemia. For outcome measures of importance, both groups prioritised HRQoL. In addition, people with PF highly ranked forced vital capacity, nocturnal oxygenation status, and apnoea-hypopnoea index, while HCPs selected long-term sequelae such as survival and development of PH. Impact of nocturnal hypoxaemia and sleep disturbance on cognitive performance was raised by people with PF as a key research topic, which was agreed by HCPs. ConclusionThis study provides important insights into stakeholders priorities to guide future research on sleep assessment and treatment of nocturnal hypoxaemia in PF.

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Differences in disease characteristics and outcomes as determined by biological sex in a large UK IPF population: Analysis from the British Thoracic Society, Interstitial Lung Disease (BTS-ILD) registry data

Mulholland, S.; Dixon, G.; Wells, M.; Harding, S.; White, P.; Russell, A.-M.; Barratt, S.

2025-03-19 respiratory medicine 10.1101/2025.03.18.25323768 medRxiv
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IntroductionGrowing evidence suggests that biological sex influences the incidence, presentation, diagnosis and outcomes of many lung diseases. Understanding these differences is the first step towards precision medicine to improve patient care. MethodsIn this cross-sectional study IPF patients enrolled in a national, multicentre registry (UK BTS-ILD) were categorised by sex and analysed for differences in demographics, pulmonary function tests, HRCT radiological pattern, eligibility/uptake of antifibrotics and survival. ResultsOf 7177 cases, 77.8% (n=5587) were male, median age 75 years (IQR 69.5-80.5) for both sexes (p=0.83). Males were more likely to have a history of smoking (p<0.001) and lower baseline median FVC % predicted (males 76.4%, IQR 66.2-86.7 vs females 78.8%, IQR 68.6-89.1, p<0.001). Diabetes, cardiovascular disease and gastro-oesophageal reflux disease were statistically more common in males (p<0.001), whilst major depressive illness was more common in females (p<0.001). Significantly more females experienced symptoms for >24 months prior to first clinic appointment (females 40.1% vs males 36.6%, p=0.028). Whilst more males in the cohort met eligibility criteria for antifibrotics at baseline (p<0.001), a larger proportion chose not to commence antifibrotic treatment (males 47.0% vs females 29.6%, p<0.001). Female sex was associated with longer mean survival (female 9.99 years (95% CI 9.18-10.79) vs males 8.57 years (95% CI 8.15-8.99), p<0.001). Male sex, higher age, lower baseline FVC % predicted and co-existent lung cancer were all independently associated with worse survival (p<0.001). ConclusionThis is the first UK study to use national registry data to systematically evaluate IPF disease characteristics stratifying by biological sex and highlights distinct characteristics between groups. Future clinical trials should explicitly explore sex-specific targeted interventions and analyses, to optimise future IPF patient care. What is already known about this topic?Idiopathic pulmonary fibrosis (IPF) is a progressive fibrotic lung condition with a poor prognosis. There are established sex differences in the incidence and prevalence of IPF, and reports of differing lived experience. What this study adds?This study is the first to report on UK real-world registry dataset to systematically evaluate sex differences in clinical disease characteristics, treatments and outcomes. The results of this study suggest that IPF has distinct characteristics depending on biological sex. How this study might affect research, practice or policy?These findings highlight key areas that could be addressed to improve patient outcomes and care within the UK. It creates the opportunity to explore tailored approaches to care.

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Hospital outcomes in interstitial lung disease-related admissions: a multicentre retrospective study in the North West of England.

White, L. J.; Shaw, J.; Powell, B.; May Kyi, N.; Sou, A.; Hughes, G.; Tilakaratne, D.; Hayton, C.; Raj, T.; Truong, V.; Ismail, N.; Khanijoun, N.; Huang, R.; Hardy, E.; Babar, M.; Khan, N.; Regan, M.; Okpala, O.; Suresh, R.; McIntosh, J.; Amjad, A.; Sohail, M.; Aslam, Z.; Gadoud, A.; Gatheral, T.; Ng Man Kwong, G.

2025-08-02 respiratory medicine 10.1101/2025.08.01.25332724 medRxiv
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BackgroundInterstitial lung diseases (ILD) are a heterogenous group of often progressive, unpredictable diseases. They frequently result in hospitalisations secondary to respiratory decompensation, termed ILD-related admissions. A proportion of these are due to acute exacerbations (AEILD). All are associated with high mortality but poorly characterised in real-world populations. AimTo evaluate mortality outcomes and associated risk factors following ILD-related hospital admissions, including AEILD. MethodsWe conducted a multicentre retrospective cohort study of primary ICD10 coded admissions for ILD between 01.01.2017 and 31.12.2019 across 11 NHS hospitals in the North West of England. AEILD events were classified using clinical criteria: a <30-day respiratory deterioration not secondary to cardiac failure, pulmonary embolism or pneumothorax. The AEILD sub-group was subsequently divided into those with CT confirmation (definite AEILD) and without CT confirmation (suspected AEILD). Primary outcome was time from admission to death. Statistical analyses included Kaplan-Meier survival and multivariate cox proportional hazards modelling. ResultsOf 938 admissions ILD-related admissions, 54.5% met study AEILD criteria. Overall, 90-day all-cause mortality was 40.2%. Median survival of the AEILD cohort was 107 days (95% CI 87.0 - 141.0 days) and other ILD-related admission cohort 241.0 days (95% CI 208.0 - 308.0 days), with a statistically significant difference in survival (p <0.0001). 37.6% (192/511) of AEILD events had CT confirmation. Within the AEILD sub-group, median survival was higher in the CT group (144 days vs. 100 days, p = 0.027). AEILD was independently associated with mortality in a multivariate model, and pre-admission oxygen, age and neutrophilia were associated with mortality in both ILD-admission and AEILD 90-day all-cause mortality models. Only 13.9% of admissions had documented palliative care input. ConclusionMortality associated with ILD-related admissions is high, with AEILD events independently associated with high mortality. Findings highlight the need for improved education, improved access to palliative care and targeted AEILD research. Key MessagesO_ST_ABSWhat is already known on this topic.C_ST_ABSHospital admissions in interstitial lung disease (ILD) carry a high risk of mortality, particularly when precipitated by an acute exacerbation (AEILD). Prior international surveys have highlighted clinician heterogeneity in the approach to AEILD, but there is very limited real-world data describing admission outcomes, diagnostic and treatment patterns from the UK. What this study adds.This study adds to the understanding that AEILD conveys poor survival outcomes and highlights age, pre-admission oxygen use and neutrophilia as poor prognostic indicators. It highlights underuse of CT for diagnostic confirmation and demonstrates that a lack of CT confirmation is associated with shorter survival in simple modelling. It also demonstrates low palliative care inpatient service utilisation. How this study might affect research, practice or policy.These findings highlight the urgent need for consistent diagnostic pathways, equitable access to CT imaging and early multidisciplinary input for AEILD. Improved education of the non-specialist, patients and their relatives could improve recognition and outcomes in this high-risk population - including timeline access to palliative care and acute admission burden.

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Assessing the relationship between measures of healthcare access and functional limitations among individuals with Chronic Obstructive Pulmonary Disease (COPD)

Adeyemi, O. J.; Arif, A. A.; Paul, R.

2022-01-05 respiratory medicine 10.1101/2021.12.30.21268572 medRxiv
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ObjectivesFunctional limitation from COPD manifests more from physical rather than respiratory impairment. To what extent health access affects the functional limitation among individuals with COPD is yet to be known. This study aims to assess the relationship between healthcare access and functional limitations among individuals with COPD. Study DesignRetrospective analysis of a cross-sectional population-based survey MethodsThis study pooled 11-year (2008 - 2018) data from the Integrated Public Use Microdata Series - National Health Interview Survey (IPUMS-NHIS). We restricted the data to respondents with self-reported COPD, aged 40 years and older. The independent variables were sociodemographic and behavioral characteristics. The exploratory variables were measures of healthcare access - healthcare coverage, delayed appointment, affordable care, and a usual place for care. The outcome variable was the presence or absence of functional limitations. ResultsThe age, race, educational attainment, marital status, smoking status, and poverty-income ratio had a significant association with functional limitation (p<0.001) We found statistically significant associations between functional limitation and healthcare coverage, delayed appointment, affordable care, and a usual place for care. Poverty modified the relationship between functional limitations and the four measures of healthcare access, with the odds of functional limitation increased among the poor with no healthcare coverage, delayed appointment, unaffordable care, and no usual place for care. ConclusionsA strong relationship exists between the quartet of healthcare coverage, delayed appointment, affordable care, and usual place for care and self-reported functional limitation among individuals with COPD. Poverty was an effect modifier, with the odds of functional limitation worse among the poor.

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A scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF).

Bramhill, C. R.; Mulryan, H.; Langan, D.; Eustace-Cook, J.; Russell, A.-M.; Brady, A.-M.

2023-09-12 respiratory medicine 10.1101/2023.09.11.23294619 medRxiv
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TitleA scoping review of the unmet needs of patients diagnosed with idiopathic pulmonary fibrosis (IPF). AimsPatients diagnosed with IPF have a high symptom burden and numerous needs that remain largely unaddressed despite advances in available treatment options. There is a need to comprehensively identify patients needs and create opportunities to address them. This scoping review aimed to synthesise the available evidence and identify gaps in the literature regarding the unmet needs of patients diagnosed with IPF. MethodsThe protocol for the review was registered with Open Science Framework (DOI 10.17605/OSF.IO/SY4KM). A systematic search was performed in March 2022, in CINAHL, MEDLINE, Embase, PsyhcoInfo, Web of Science Core Collection and ASSIA Applied Social Science Index. A comprehensive review of grey literature was also completed. Inclusion criteria included patients diagnosed with IPF or PF; English language only and date range 2011-2022. A range of review types were included. Data was extracted using a data extraction form. Data was analysed using descriptive and thematic analysis. A total of 884 citations were reviewed. Ethical approval was not required. Results52 citations were selected for final inclusion. Five themes were identified: psychological impact of an IPF diagnosis; adequate information and education: at the right time and in the right way; high symptom burden support needs; referral to palliative care and advanced care planning (ACP) and health service provision-a systems approach. ConclusionThis review highlights the myriad of needs patients with IPF have and highlights the urgent need for a systems approach to care, underpinned by an appropriately resourced multi-disciplinary team. The range of needs experienced by patients with IPF are broad and varied and require a holistic approach to care including targeted research, coupled with the continuing development of patient-focused services and development of a clinical care programme.

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"This guideline is not practical; it might be practical to specialists like you": Doctors experiences of the Global Initiative for Asthma (GINA) guideline in Nigeria; A qualitative study.

Ozoh, O. B.; Dede, S. K.; Eze, J. N.; Mortimer, K.; Chinouya, M. J.

2022-10-17 respiratory medicine 10.1101/2022.10.14.22281114 medRxiv
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BackgroundThe Global Initiative for Asthma (GINA) report sets out updated evidence-based strategy for asthma management. Little is known about how this report is perceived and implemented in low-income and middle-income countries (LMICs) like Nigeria. We explored the experiences of asthma management as informed by the current GINA guideline among doctors in Lagos, Nigeria. MethodsUsing a qualitative research approach, in-depth interviews were conducted among doctors in Lagos, Nigeria to explore their experiences of asthma management in the context of the current GINA report. The thematic framework approach was used for data analysis. ResultsEleven doctors (five general practitioners (GPs) and six Family Physicians (FPs) took part. Four overarching themes were identified: O_LIKnowledge of, and attitude towards the GINA strategy: Whilst most doctors were aware of the existence of the GINA report, there was limited knowledge about its content including current recommendations for mild asthma treatment. C_LIO_LIAsthma diagnosis and treatment: There was limited access to lung function testing facilities and its role in asthma diagnosis was underappreciated. C_LIO_LIBarriers to managing asthma according to GINA recommendations: These included complexity of the GINA report, unavailability and unaffordability of asthma medicines and poor patient adherence to medications, driven by socio-cultural factors. C_LIO_LIEnablers of GINA-recommended asthma management: Improvement in asthma education for doctors and the general population and better access to diagnostic tests and medicines. C_LI ConclusionWhilst there was awareness of the existence of the GINA report, there was limited knowledge about its content and several barriers to its implementation were reported. Education about the GINA report, investment in diagnostic and treatment services and simplification of recommendations were identified as possible solutions.

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Gender Differences in the Diagnosis of Chronic Obstructive Pulmonary Disease after Spirometry

Moffett, A. T.; Halpern, S. D.; Weissman, G. E.

2024-07-19 respiratory medicine 10.1101/2024.07.18.24310648 medRxiv
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BackgroundWomen are more likely than men to report delays in the diagnosis of chronic obstructive pulmonary disease (COPD), though the etiology of these delays is unknown. We sought to test whether delays in COPD diagnosis persist after the performance of spirometry. MethodsWe used the Optum Labs Data Warehouse to identify patients 18 years of age and older without a prior diagnosis of COPD, with a post-bronchodilator forced expiratory volume in 1 second (FEV1) to forced vital capacity (FVC) ratio of less than 0.7 on spirometry. We used a Cox proportional hazards model to compare the time to diagnosis after spirometry in men and women, adjusting for age, race, ethnicity, tobacco use, and post-bronchodilator FEV1/FVC. ResultsThe probability of receiving a COPD diagnosis after the performance of spirometry was lower among women than men (adjusted hazard ratio [aHR] 0.66, 95% confidence interval [CI] 0.50 to 0.88) ConclusionIn this retrospective cohort study of patients with spirometric evidence of obstruction, the time to diagnosis of COPD was greater among women than men. While previous vignette-based studies have found that gender differences in the diagnosis of COPD resolve with the performance of spirometry, we found that gender differences persist after spirometry has been performed. Clinicians were less likely to diagnose COPD in women even when spirometry supported this diagnosis.