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Janelle Yorke,1,2 Naimat Khan,1,3 Adam Garrow,1 Sarah Tyson,1 Dave Singh,1,3 Jorgen Vestbo,1,4 Paul W Jones5 1Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK; 2Christie Patient Centred Research, The Christie NHS Foundation Trust, Whittington, Manchester, UK; 3Medicines Evaluation Unit, Wythenshawe, Manchester, UK; 4Department of Respiratory Medicine, Wythenshawe Hospital, Manchester, UK; 5St George’s Hospital, University of London, London, UKCorrespondence: Janelle Yorke, Tel +44920 264411, Email janelle.yorke@nhs.netPurpose: The modified-Medical Research Council (mMRC) breathlessness scale consists of five grades that contain of a description of different activities. It has wide utility in the assessment of disability due to breathlessness but was originally developed before the advent of modern psychometric methodology and, for example contains more than one activity per grade. We conducted an evaluation of the mMRC structure.Patients and Methods: Cognitive debriefing was conducted with COPD patients to elicit their understanding of each mMRC activity. In a cross-sectional study, patients completed the mMRC scale (grades 0– 4) and an MRC-Expanded (MRC-Ex) version consisting of 10-items, each containing one mMRC activity. Each activity was then given a 4-point response scale (0 “not at all” to 4 “all of the time”) and all 10 items were given to 203 patients to complete Rasch analysis and assess the pattern of MRC item severity and its hierarchical structure.Results: Cognitive debriefing with 36 patients suggested ambiguity with the term “strenuous exercise” and perceived severity differences between mMRC activities. 203 patients completed the mMRC-Ex. Strenuous exercise was located third on the ascending severity scale. Rasch identified the mildest term was “walking up a slight hill” (logit − 2.76) and “too breathless to leave the house” was the most severe (logit 3.42).Conclusion: This analysis showed tha

Clinical trials evaluating the management of acute exacerbations of COPD assess heterogeneous outcomes, often omitting those that are clinically relevant or more important to patients. We have developed a core outcome set, a consensus-based minimum set of important outcomes that we recommend are evaluated in all future clinical trials on exacerbations management, to improve their quality and comparability. COPD exacerbations outcomes were identified through methodological systematic reviews and qualitative interviews with 86 patients from 11 countries globally. The most critical outcomes were prioritised for inclusion in the core outcome set through a two-round Delphi survey completed by 1063 participants (256 patients, 488 health professionals and 319 clinical academics) from 88 countries in five continents. Two global, multi-stakeholder, virtual consensus meetings were conducted to 1) finalise the core outcome set and 2) prioritise a single measurement instrument to be used for evaluating each of the prioritised outcomes. Consensus was informed by rigorous methodological systematic reviews. The views of patients with COPD were accounted for at all stages of the project. Survival, treatment success, breathlessness, quality of life, activities of daily living, the need for a higher level of care, arterial blood gases, disease progression, future exacerbations and hospital admissions, treatment safety and adherence were all included in the core outcome set. Focused methodological research was recommended to further validate and optimise some of the selected measurement instruments. The panel did not consider the prioritised set of outcomes and associated measurement instruments to be burdensome for patients and health professionals to use.

Michelle A Stubbs,1– 3 Vanessa L Clark,1– 3 Melissa Mei Yin Cheung,4 Lorraine Smith,5 Bandana Saini,5,6 Janelle Yorke,7,8 Eleanor C Majellano,1– 3 Peter G Gibson,1,2,9 Vanessa M McDonald1– 3,9 1National Health and Medical Research Council Centre for Research Excellence in Severe Asthma, The University of Newcastle, Newcastle, New South Wales, Australia; 2The Priority Research Centre for Healthy Lungs, The University of Newcastle, Newcastle, New South Wales, Australia; 3School of Nursing and Midwifery, The University of Newcastle, Newcastle, New South Wales, Australia; 4The University of Sydney Children’s Hospital Westmead, Westmead Clinical School, Faculty of Medicine and Health, The University of Sydney, Westmead, New South Wales, Australia; 5School of Pharmacy, University of Sydney, Camperdown, New South Wales, Australia; 6Woolcock Institute of Medical Research, Sydney, New South Wales, Australia; 7School of Health Sciences, School of Health Sciences, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, UK; 8Christie Patient Centred Research, The Christie NHS Foundation Trust, Manchester, UK; 9Department of Respiratory and Sleep Medicine, John Hunter Hospital, Newcastle, New South Wales, AustraliaCorrespondence: Vanessa M McDonaldLevel 2 West Wing, Hunter Medical Research Institute, Locked Bag 1000, New Lambton, New South Wales, 2305, AustraliaFax +6140420046Email vanessa.mcdonald@newcastle.edu.auPurpose: Severe asthma, depression and anxiety often co-exist and increase disease burden. Currently there are no published studies investigating severe asthma and psychological comorbidity using arts-based methodology. We aimed to (i) illustrate the individual experience of adults living with severe asthma, with and without symptoms of depression and/or anxiety and (ii) to explore common characteristics depicted in artworks between those groups.Patients and Methods: A qualitative arts-based study was conducted. Adults with severe asthm

Rationale: The evidence base for rehabilitation in pulmonary hypertension is expanding, but adoption in clinical practice is limited. Objectives: The World Health Organization International Classification for Functioning, Disability and Health identifies three health domains: Body Functions/Structures, Activity and Participation in society. To ensure that the wider impact of rehabilitation in pulmonary hypertension is accurately assessed, it is important that study endpoints reflect all three domains. Methods: A systematic review of the literature was conducted to identify studies of rehabilitation in patients with pulmonary hypertension from 2006 to 2019. Results: Searches across five databases yielded 2,564 articles, of which 34 met eligibility criteria; 50 different outcome measures (mean = 5, minimum = 1, maximum = 9) were identified. When mapped onto the World Health Organization International Classification for Functioning, Disability and Health, 48% of instances of outcome usage were measures of Body Functions/Structure, 33% were measures of Activity, and 18% were measures of Participation. Measures of Participation were not included in seven studies (21%). Conclusions: Studies of rehabilitation in pulmonary hypertension have focused primarily on measures of Body Functions/Structure; the impact in other health domains is not well characterized. Greater inclusion of outcome measures reflecting Activity and Participation in society is needed to allow assessment of the wider impact of rehabilitation in patients with pulmonary hypertension.

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

Randomised controlled trials (RCTs) on the management of COPD exacerbations evaluate heterogeneous outcomes, often omitting those that are clinically important and patient relevant. This limits their usability and comparability. A core outcome set (COS) is a consensus-based minimum set of clinically important outcomes that should be evaluated in all RCTs in specific areas of health care. We present the study protocol of the COS-AECOPD ERS Task Force, aiming to develop a COS for COPD exacerbation management, that could remedy these limitations. For the development of this COS we follow standard methodology recommended by the COMET initiative. A comprehensive list of outcomes is assembled through a methodological systematic review of the outcomes reported in relevant RCTs. Qualitative research with patients with COPD will also be conducted, aiming to identify additional outcomes that may be important to patients, but are not currently addressed in clinical research studies. Prioritisation of the core outcomes will be facilitated through an extensive, multi-stakeholder Delphi survey with a global reach. Selection will be finalised in an international, multi-stakeholder meeting. For every core outcome, we will recommend a specific measurement instrument and standardised time points for evaluation. Selection of instruments will be based on evidence-informed consensus. Our work will improve the quality, usability and comparability of future RCTs on the management of COPD exacerbations and, ultimately, the care of patients with COPD. Multi-stakeholder engagement and societal support by the European Respiratory Society will raise awareness and promote implementation of the COS.

The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

Background: Patients with idiopathic pulmonary fibrosis (IPF) have impaired health-related quality of life (HRQL). To measure HRQL, an IPF-specific version of the St. George's Respiratory Questionnaire (SGRQ-I) was developed, but not sufficiently validated. This study aimed to assess the validity (i.a. known-groups validity and concurrent validity) and test-retest reliability of SGRQ-I in IPF patients with different disease durations. Methods: Patients with IPF were consecutively recruited and completed SGRQ, SGRQ-I, King's Brief Interstitial Lung Disease questionnaire (K-BILD), University of California, San Diego Shortness of Breath Questionnaire (SOBQ) and Short Form-36 (SF-36) along with pulmonary function tests and a 6-min walk test (6MWT) at baseline. After two weeks, SGRQ-I and Global Rating of Change Scales (GRCS) were completed. Results: At baseline and after two weeks, 150 and 134 patients completed the questionnaires, respectively. The internal consistency of SGRQ-I was high (Cronbach's α = 0.92). Good concurrent validity was demonstrated by high intraclass correlation coefficients (ICC = 0.97), Bland-Altman plots and moderate to strong correlations to K-BILD, SOBQ and SF-36 (r = - 0.46 to 0.80). High ICC (0.92) and a Bland-Altman plot indicated good test-retest reliability. SGRQ-I was good at discriminating between patients with different stages of disease (Δscore > 18.1, effect sizes > 0.10). Validity was similar across groups of different disease duration. Conclusions: SGRQ-I proved to be valid at distinguishing between different disease severities, valid compared to other HRQL instruments, applicable across different disease durations and reliable upon repetition. SGRQ-I is a valid option for measuring HRQL in patients with IPF. Trial registration: The study was registered at clinicaltrials.org (NCT02818712) on 15 June 2016.

BackgroundThere are inconsistencies in the literature regarding the prevalence and assessment of chemotherapy-induced peripheral neuropathy (CIPN). This study explored CIPN natural history and its characteristics in patients receiving taxane- and platinum-based chemotherapy.Patients and methodsMulti-country multisite prospective longitudinal observational study. Patients were assessed before commencing and three weekly during chemotherapy for up to six cycles, and at 6,9, and 12 months using clinician-based scales (NCI-CTCAE; WHO-CIPN criterion), objective assessments (cotton wool test;10 g monofilament); patient-reported outcome measures (FACT/GOG-Ntx; EORTC-CIPN20), and Nerve Conduction Studies.ResultsIn total, 343 patients were recruited in the cohort, providing 2399 observations. There was wide variation in CIPN prevalence rates using different assessments (14.2-53.4%). Prevalence of sensory neuropathy (and associated symptom profile) was also different in each type of chemotherapy, with paclitaxel (up to 63%) and oxaliplatin (up to 71.4%) showing the highest CIPN rates in most assessments and a more complex symptom profile. Peak prevalence was around the 6-month assessment (up to 71.4%). Motor neurotoxicity was common, particularly in the docetaxel subgroup (up to 22.1%; detected by NCI-CTCAE). There were relatively moderately-to-low correlations between scales (rs = 0.15,p < 0.05-rs = 0.48 p < 0.001), suggesting that they measure different neurotoxicity aspects from each other. Cumulative chemotherapy dose was not associated with onset and course of CIPN.ConclusionThe historical variation reported in CIPN incidence and prevalence is possibly confounded by disagreement between assessment modalities. Clinical practice should consider assessment of motor neuropathy for neurotoxic chemotherapy. Current scales may not be all appropriate to measure CIPN in a valid way, and a combination of scales are needed.

BackgroundChemotherapy-induced peripheral neuropathy (CIPN) is a significant and difficult to manage side effect of neurotoxic chemotherapies. Several risk factors for CIPN have been identified to date, but inconsistencies and methodological limitations exist in past research. Also, a limited number of potential risk factors has been investigated in the past.AimThe objective of this study was to assess the relative contribution of a wider range of risk factors in the development of CIPN.MethodsThis analysis used the 6-month data after starting chemotherapy from a larger prospective observational study on CIPN risk, prevalence, and quality of life. Patients were assessed at recruitment for possible CIPN risk factors, including prior history of neuropathies, current/past infectious diseases; neurotoxic medication history; personal and treatment characteristics; smoking history, alcohol use, and vegetable/fruit intake. Neuropathy was assessed at 6-months after starting chemotherapy with the neuropathy (motor/sensory) items of the NCI-CTCAE scale and the WHO criterion for neuropathy. Data on symptom burden were also collected.ResultsData were available from 255 patients from three cancer centers in Hong Kong, Singapore, and UK. The use of different scales did not always identify the same predictor variables. Key risk factors in multivariate regression models included older age (highest OR = 1.08, p < 0.01 with the WHO scale), chemotherapy (platinum-based chemotherapy had OR = 0.20-0.27 in developing CIPN compared to taxane-based chemotherapy), history of neuropathy (for motor CIPN only, OR = 8.36, p < 0.01), symptom burden (OR = 1.06, p < 0.05), number of chemotherapy cycles received (OR = 1.19-1.24, p < 0.01), and alcohol intake (OR = 0.32, p < 0.05). In univariate analysis, the use of statins was implicated with CIPN (p = 0.03-0.0

Context/objectivesThis is the first study to determine the minimal clinically important difference (MCID) of the European Organisation of Research and Treatment of Cancer Quality of Life Questionnaire-CIPN twenty-item scale (EORTC QLQ-CIPN20), a validated instrument designed to elicit cancer patients' experience of symptoms and functional limitations related to chemotherapy-induced peripheral neuropathy.MethodsCancer patients receiving neurotoxic chemotherapy completed EORTC QLQ-CIPN20 and the Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity [FACT/GOG-NTX] at baseline, second cycle of chemotherapy (T2, n = 287), and 12 months after chemotherapy (T3, n = 191). Anchor-based approach used the validated FACT/GOG-NTX neurotoxicity (Ntx) subscale to identify optimal MCID cutoff for deterioration. Distribution-based approach used one-third standard deviation (SD), half SD, and one standard error of measurement of the total EORTC QLQ-CIPN20 score.ResultsThere was a moderate correlation between the change scores of the Ntx subscale and sensory and motor subscales of QLQ-CIPN20 (T2: r = - 0.722, p < 0.001 and r = - 0.518, p < 0.001, respectively; T3: r = - 0.699; p < 0.001 and r = - 0.523, p < 0.001, respectively). The correlation between the change scores of the Ntx subscale and the QLQ-CIPN20 autonomic subscale was poor (T2: r = - 0.354, p < 0.001; T3: r = 0.286, p < 0.001). Based on the MCID derived using distribution-based method, the MCID for the QLQ-CIPN20 sensory subscale was 2.5-5.9 (6.9% to 16.4% of the subdomain score) and for motor subscale was 2.6-5.0 (8.1%-15.6% of the subdomain score).ConclusionThe MCID for the EORTC QLQ-CIPN20 established using distribution-based approaches was 2.5-5.9 for the sensory subscale and 2.6-5.0 for the motor subscale. When noted in assessments even with small change in scores, clinicians can be alerted for appropriate intervention.

Respiratory nurses make a significant contribution to the delivery of respiratory healthcare, but there is a dearth of nurse-led, practice-focused, published research. Using a modified three-round Delphi, this study sought to identify research priorities for respiratory nursing to inform a national research strategy. Study information and the survey link were sent electronically to members of UK professional respiratory organisations. Round 1 had 78 items across 16 topics, informed by a systematic literature review. Respondents suggested additional items which were content analysed to inform Round 2. Respondents rated all items and ranked the topics in all rounds. To ensure rigour, rounds had an explicit focus with pre-determined criteria for consensus (70%). In total, 363 responses were received across Rounds 1, 2 and 3 (n=183, 95 and 85, respectively). The top five research priorities were: 1) “Patient understanding of asthma control”; 2) “The clinical and cost-effectiveness of respiratory nurse interventions”; 3) “The impact of nurse-led clinics on patient care”; 4) “Inhaler technique”; and 5) two topics jointly scored: “Prevention of exacerbations” and “Symptom management”. With potential international significance, this is the first UK study to identify research priorities for respiratory nursing, providing direction for those planning or undertaking research.

Objectives: Little is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and co-morbid dementia, their informal caregivers and oncology HCPs.Design: Cross-sectional qualitative study. Semi-structured interviews were conducted face-to-face with participants. Interviews were audio-recorded and transcribed prior to thematic analysis. Setting: Patients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre. Participants: Purposeful sample of ten patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).Results: Four themes were identified: 1) leading to the initial consultation: HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; 2) communicating clinically relevant information: informal caregivers are relied upon to provide patient information, advocate for the patient and support decision-making; 3) adjustments to cancer care: patients with dementia get through treatment with the help of their family; and 4) following completion of cancer treatment: there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making. Conclusions: Although patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of deme

Objectives: A comorbid diagnosis of cancer and dementia (cancer-dementia) may have uniqueimplications for patient cancer-related experience. The objectives were to estimate prevalence ofcancer-dementia and related experiences of people with dementia, their carers and cancer cliniciansincluding cancer screening, diagnosis, treatment and palliative care. Method: Databases weresearched (CINAHL, Psychinfo, Medline, Embase, BNI) using key terms such as dementia, cancer andexperience. Inclusion criteria were: a) English language, b) published any time until early 2016, c)diagnosis of cancer-dementia and d) original articles that assessed prevalence and/or cancer-relatedexperiences including screening, cancer treatment and survival. Due to variations in study design andoutcomes, study data were synthesized narratively. Results: Forty-seven studies were included in thereview with a mix of quantitative (n = 44) and qualitative (n = 3) methodologies. Thirty-four studiesreported varied cancer-dementia prevalence rates (range 0.2-45.6%); the others reported reducedlikelihood of receiving: cancer screening, cancer staging information, cancer treatment with curativeintent and pain management, compared to those with cancer only. The findings indicate poorercancer-related clinical outcomes including late diagnosis and higher mortality rates in those withcancer-dementia despite greater health service use. Conclusions: There is a dearth of good qualityevidence investigating the cancer-dementia prevalence and its implications for successful cancertreatment. Findings suggest that dementia is associated with poorer cancer outcomes although thereasons for this are not yet clear. Further research is needed to better understand the impact of cancerdementiaand enable patients, carers and clinicians to make informed cancer-related decisions.

Objectives: Little is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and co-morbid dementia, their informal caregivers and oncology HCPs.Design: Cross-sectional qualitative study. Semi-structured interviews were conducted face-to-face with participants. Interviews were audio-recorded and transcribed prior to thematic analysis. Setting: Patients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre. Participants: Purposeful sample of ten patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).Results: Four themes were identified: 1) leading to the initial consultation: HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; 2) communicating clinically relevant information: informal caregivers are relied upon to provide patient information, advocate for the patient and support decision-making; 3) adjustments to cancer care: patients with dementia get through treatment with the help of their family; and 4) following completion of cancer treatment: there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making. Conclusions: Although patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of deme

Naimat Khan,1 Jørgen Vestbo,2 Adam Garrow,3 Pradeep Karur,4 Umme Kolsum,5 Sarah Tyson,6 Dave Singh,7 Janelle Yorke8 1The Medicines Evaluation Unit, Wythenshawe Hospital, Manchester, UK; 2University of Manchester, Manchester University NHS Foundation Trust, Manchester, UK; 3Division of Population Health, University of Manchester, Manchester, UK; 4Medicines Evaluation Unit, Manchester, UK; 5University of Manchester, Manchester, UK; 6University of Manchester, School of Health Sciences, Manchester Academic Health Sciences Centre, Manchester, UK; 7University of Manchester, The Medicines Evaluation Unit, Manchester, UK; 8University of Manchester, School of Health Sciences, Manchester, UK Background: In COPD disturbed sleep is related to exacerbation frequency, poor quality of life, and early mortality. We developed the Manchester Respiratory-related Sleep Symptoms scale (MaRSS) to assess sleep-time symptoms in COPD. Methods: Focus groups including COPD and age-matched controls were used to develop an item-list, which was then administered to COPD patients and age-matched controls in a cross-sectional study. Hierarchical and Rasch analysis informed item selection and scale unidimensionality. Construct validity was examined using Pearson’s correlation with the Sleep Problems Index, St George’s Respiratory Questionnaire (SGRQ), and FACIT-Fatigue scale. MaRSS change scores from baseline (stable) to exacerbation were assessed in a separate substudy of COPD patients. Results: Thirty-six COPD patients and nine age-matched controls produced an initial 26-item list. The cross-sectional study involved 203 COPD patients (male: 63%, mean age 64.7 years) and 50 age-matched controls (male: 56%, mean age 65.8 years). Eighteen items were removed to develop an eight-item unidimensional scale covering breathlessness, chest tightness, cough, sputum production, lack of sleep, and medication use. MaRSS scores significantly correlated with sleep problems, SGRQ To

Anna Garner,1 Matthew Hodson,2 Georgios Ketsetzis,3 Laurence Pulle,3 Janelle Yorke,4,5 Angshu Bhowmik2 1NHS City and Hackney Clinical Commissioning Group, 2Respiratory Medicine, Homerton University Hospital NHS Foundation Trust, 3North East London Commissioning Support Unit, London, 4School of Health Sciences, University of Manchester, 5The Christie NHS Foundation Trust, Manchester, UK Abstract: Exacerbations of COPD carry a huge burden of morbidity and a significant economic impact. It has been shown that home care may be useful for exacerbations of COPD. This article presents a review of an integrated COPD service in east London. Hospital Episode Statistics, Public Health Mortality Files and clinical data were used to analyze differences in health care usage and COPD patient outcomes, including COPD assessment test (CAT) scores for a subsample, before and after the introduction of the integrated service. There was a significant (30%) reduction in the number of hospital bed days for COPD patients (P<0.05), alongside a significant increase in patients with only a short stay (0–1 days) in hospital (P<0.0001). There was a significant increase in the number of patients dying outside of hospital (a proxy for quality of end-of-life care) following introduction of the service (P=0.00015). Patients also reported a clinically significant improvement in CAT scores. A locally developed economic model shows that the economic benefits of the service (via impact on place of death and reduction in length of hospital stay) were almost equal to the cost of the service. The increase in proportion of short-stay admissions and the reduction in bed days suggest an impact of the service on early supported discharge and that this along with an improvement in patient clinical outcomes and in quality of end-of-life care shows that an exemplar integrated COPD service can provide benefits that equate to a nearly cost-neutral service. Keywords: COPD, commissio

High-quality research is needed to improve quality of life for people with chronic refractory breathlessness in COPD http://ow.ly/Q2GDY

Adam P Garrow,1,2 Janelle Yorke,2 Naimat Khan,1 Jørgen Vestbo,3 Dave Singh,1 Sarah Tyson1 1University of Manchester Medicines Evaluation Unit, University Hospital of South Manchester Foundation Trust, 2School of Nursing, Midwifery and Social Work, University of Manchester, 3The University of Manchester Academic Health Science Centre, University Hospital South Manchester NHS Foundation Trust, Manchester, UK Background: Sleep problems are common in patients with chronic obstructive pulmonary disease (COPD), but the validity of patient-reported outcome measures (PROMs) that measure sleep dysfunction has not been evaluated. We have reviewed the literature to identify disease-specific and non-disease-specific sleep PROMs that have been validated for use in COPD patients. The review also examined the psychometric properties of identified sleep outcome measures and extracted point and variability estimates of sleep instruments used in COPD studies. Methods: The online EMBASE, MEDLINE, PsycINFO, and SCOPUS databases for all years to May 2014 were used to source articles for the review. The review was performed according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Criteria from the Medical Outcomes Trust Scientific Advisory Committee guidelines were used to evaluate the psychometric properties of all sleep PROMs identified. Results: One COPD-specific and six non-COPD-specific sleep outcome measures were identified and 44 papers met the review selection criteria. We only identified one instrument, the COPD and Asthma Sleep Impact Scale, which was developed specifically for use in COPD populations. Ninety percent of the identified studies used one of two non-disease-specific sleep scales, ie, the Pittsburgh Sleep Quality Index and/or the Epworth Sleep Scale, although neither has been tested for reliability or validity in people with COPD. Conclusion: The results highlight a need for existing non-disease-specific instruments to b