Imperial College London

Dr Anne-Marie Russell

Faculty of MedicineDepartment of Surgery & Cancer

Honorary Clinical Research Fellow
 
 
 
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Contact

 

a.russell Website

 
 
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Location

 

G08Emmanuel Kaye BuildingRoyal Brompton Campus

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Summary

 

Publications

Publication Type
Year
to

99 results found

Sugg HVR, Russell A-M, Morgan LM, Iles-Smith H, Richards DA, Morley N, Burnett S, Cockcroft EJ, Thompson Coon J, Cruickshank S, Doris FE, Hunt HA, Kent M, Logan PA, Rafferty AM, Shepherd MH, Singh SJ, Tooze SJ, Whear Ret al., 2021, Fundamental nursing care in patients with the SARS-CoV-2 virus: results from the ‘COVID-NURSE’ mixed methods survey into nurses’ experiences of missed care and barriers to care, BMC Nursing, Vol: 20

<jats:title>Abstract</jats:title><jats:sec> <jats:title>Background</jats:title> <jats:p>Patient experience of nursing care is associated with safety, care quality, treatment outcomes, costs and service use. Effective nursing care includes meeting patients’ fundamental physical, relational and psychosocial needs, which may be compromised by the challenges of SARS-CoV-2. No evidence-based nursing guidelines exist for patients with SARS-CoV-2. We report work to develop such a guideline. Our aim was to identify views and experiences of nursing staff on necessary nursing care for inpatients with SARS-CoV-2 (not invasively ventilated) that is omitted or delayed (missed care) and any barriers to this care.</jats:p> </jats:sec><jats:sec> <jats:title>Methods</jats:title> <jats:p>We conducted an online mixed methods survey structured according to the Fundamentals of Care Framework. We recruited a convenience sample of UK-based nursing staff who had nursed inpatients with SARS-CoV-2 not invasively ventilated. We asked respondents to rate how well they were able to meet the needs of SARS-CoV-2 patients, compared to non-SARS-CoV-2 patients, in 15 care categories; select from a list of barriers to care; and describe examples of missed care and barriers to care. We analysed quantitative data descriptively and qualitative data using Framework Analysis, integrating data in side-by-side comparison tables.</jats:p> </jats:sec><jats:sec> <jats:title>Results</jats:title> <jats:p>Of 1062 respondents, the majority rated mobility, talking and listening, non-verbal communication, communicating with significant others, and emotional wellbeing as worse for patients with SARS-CoV-2. Eight barriers were ranked within the top five in at least one of the three care areas

Journal article

Seligman WH, Fialho L, Sillett N, Nielsen C, Baloch FM, Collis P, Demedts IKM, Fleck MP, Floriani MA, Gabriel LEK, Gagnier JJ, Keetharuth A, Londral A, Ludwig IIL, Lumbreras C, Moscoso Daza A, Muhammad N, Nader Bastos GA, Owen CW, Powers JH, Russell A-M, Smith MK, Wang TY-P, Wong EK, Woodhouse DC, Zimlichman E, Brinkman Ket al., 2021, Which outcomes are most important to measure in patients with COVID-19 and how and when should these be measured? Development of an international standard set of outcomes measures for clinical use in patients with COVID-19: a report of the International Consortium for Health Outcomes Measurement (ICHOM) COVID-19 Working Group., BMJ Open, Vol: 11

OBJECTIVES: The COVID-19 pandemic has resulted in widespread morbidity and mortality with the consequences expected to be felt for many years. Significant variation exists in the care even of similar patients with COVID-19, including treatment practices within and between institutions. Outcome measures vary among clinical trials on the same therapies. Understanding which therapies are of most value is not possible unless consensus can be reached on which outcomes are most important to measure. Furthermore, consensus on the most important outcomes may enable patients to monitor and track their care, and may help providers to improve the care they offer through quality improvement. To develop a standardised minimum set of outcomes for clinical care, the International Consortium for Health Outcomes Measurement (ICHOM) assembled a working group (WG) of 28 volunteers, including health professionals, patients and patient representatives. DESIGN: A list of outcomes important to patients and professionals was generated from a systematic review of the published literature using the MEDLINE database, from review of outcomes being measured in ongoing clinical trials, from a survey distributed to patients and patient networks, and from previously published ICHOM standard sets in other disease areas. Using an online-modified Delphi process, the WG selected outcomes of greatest importance. RESULTS: The outcomes considered by the WG to be most important were selected and categorised into five domains: (1) functional status and quality of life, (2) mental functioning, (3) social functioning, (4) clinical outcomes and (5) symptoms. The WG identified demographic and clinical variables for use as case-mix risk adjusters. These included baseline demographics, clinical factors and treatment-related factors. CONCLUSION: Implementation of these consensus recommendations could help institutions to monitor, compare and improve the quality and delivery of care to patients with COVID-19. Thei

Journal article

Wijsenbeek MS, Bonella F, Orsatti L, Russell A-M, Valenzuela C, Wuyts WA, Baile WFet al., 2021, Communicating with patients with IPF: can we do it better?, ERJ Open Research, Pages: 00422-2021

<jats:p>Communications between clinicians and patients with idiopathic pulmonary fibrosis (IPF) have the potential to be challenging. The variable course and poor prognosis of IPF complicate discussions around life expectancy but should not prevent clinicians from having meaningful conversations about patients’ fears and needs, while acknowledging uncertainties. Patients want information about the course of their disease and management options, but the provision of information needs to be individualised to the needs and preferences of the patient. Communication from clinicians should be empathetic and take account of the patient's perceptions and concerns. Models, tools and protocols are available that can help clinicians to improve their interactions with patients. In this article, we consider the difficulties inherent in discussions with patients with IPF and their loved ones, and how clinicians might communicate with patients more effectively, from breaking the news about the diagnosis to providing support throughout the course of the disease.</jats:p>

Journal article

Althobiani MA, Evans RA, Alqahtani JS, Aldhahir AM, Russell AM, Hurst JR, Porter JCet al., 2021, Home monitoring of physiology and symptoms to detect Interstitial Lung Disease exacerbations and progression: a systematic review, ERJ Open Research, Pages: 00441-2021

<jats:sec><jats:title>Background</jats:title><jats:p>Acute exacerbations and disease progression in interstitial lung disease (AE-ILD) pose important challenges to clinicians and patients. AE-ILD are variable in presentation but may result in rapid progression of ILD, respiratory failure and death. However, in many cases AE-ILD may go unrecognised so that their true impact and response to therapy is unknown. The potential for home monitoring to facilitate early, and accurate, identification of AE and/or ILD progression has gained interest. With increasing evidence available, there is a need for a systematic review on home monitoring of patients with ILD to summarise the existing data.</jats:p></jats:sec><jats:sec><jats:title>Aim</jats:title><jats:p>To systematically evaluate the evidence for use of home monitoring for early detection of exacerbations and/or progression of ILD.</jats:p></jats:sec><jats:sec><jats:title>Method</jats:title><jats:p>We searched Ovid-EMBASE, MEDLINE, and CINAHL using MeSH terms in accordance with the PRISMA guidelines. PROSPERO registration number (CRD42020215166).</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Thirteen studies comprising 968 patients have demonstrated that home monitoring is feasible and of potential benefit in patients with ILD. Nine studies reported that mean adherence to home monitoring was greater than 75%, and where spirometry was performed there was a significant correlation (r=0.72–0.98, p&lt;0.001) between home and hospital-based readings. Two studies suggested that home monitoring of Forced Vital Capacity (FVC) might facilitate detection of progression in idiopathic pulmonary fibrosis (IPF).</jats:p></jats:sec><jats:sec><jats:title>Conclusion</jats:title><jats:p>Despite the fact that individual studies in this system

Journal article

Cassidy N, Fox L, Love M, Byrne I, Doyle AM, Korn B, Shanagher D, Shone T, Cullen M, Cullen T, Mullaney P, O'Carroll N, O'Dowd G, O'Sullivan T, Russell A-Met al., 2021, Fibrotic interstitial lung disease - palliative care needs: a World-Café qualitative study., BMJ Support Palliat Care

OBJECTIVES: The importance of palliative care in those with advanced fibrotic interstitial lung diseases (F-ILD) is recognised, but the palliative care requirements of patients and caregivers affected by F-ILD regardless of disease course are not established. We set out to explore this and identify optimal solutions in meeting the needs of a F-ILD population in Ireland. METHODS: Implementing a World-Café qualitative research approach, we captured insights evolving, iteratively in interactive small group discussions in response to six predefined topics on palliative care and planning for the future. Thirty-nine stakeholders participated in the World-Café including 12 patients, 13 caregivers, 9 healthcare professionals, 4 industry representatives and 1 representative of the clergy. RESULTS: Palliative care emerged as fundamental to the care and treatment of F-ILDs, regardless of disease progression. Unmet palliative care needs were identified as psychological and social support, disease education, inclusion of caregivers and practical/legal advice for disease progression and end-of-life planning. Participants identified diagnosis as a particularly distressing time for patients and families. They called for the introduction of palliative care discussions at this early-stage alongside improvements in integrated care, specifically increasing the involvement of primary care practitioners in referrals to palliative services. CONCLUSION: Patients and caregivers need discussions on palliative care associated with F-ILD to be included at the point of diagnosis. This approach may address persisting inadequacies in service provision previously identified over the course of the last decade in the UK, Ireland and European F-ILD patient charters.

Journal article

Pettersson H, Alexanderson H, Poole JL, Varga J, Regardt M, Russell A-M, Salam Y, Jensen K, Mansour J, Frech T, Feghali-Bostwick C, Varjú C, Baldwin N, Heenan M, Fligelstone K, Holmner M, Lammi MR, Scholand MB, Shapiro L, Volkmann ER, Saketkoo LAet al., 2021, Exercise as a multi-modal disease-modifying medicine in systemic sclerosis: An introduction by The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis (G-FoRSS), Best Practice & Research Clinical Rheumatology, Vol: 35, Pages: 101695-101695, ISSN: 1521-6942

Journal article

Saketkoo LA, Frech T, Varjú C, Domsic R, Farrell J, Gordon JK, Mihai C, Sandorfi N, Shapiro L, Poole J, Volkmann ER, Lammi M, McAnally K, Alexanderson H, Pettersson H, Hant F, Kuwana M, Shah AA, Smith V, Hsu V, Kowal-Bielecka O, Assassi S, Cutolo M, Kayser C, Shanmugam VK, Vonk MC, Fligelstone K, Baldwin N, Connolly K, Ronnow A, Toth B, Suave M, Farrington S, Bernstein EJ, Crofford LJ, Czirják L, Jensen K, Hinchclif M, Hudson M, Lammi MR, Mansour J, Morgan ND, Mendoza F, Nikpour M, Pauling J, Riemekasten G, Russell A-M, Scholand MB, Seigart E, Rodriguez-Reyna TS, Hummers L, Walker U, Steen Vet al., 2021, A comprehensive framework for navigating patient care in systemic sclerosis: A global response to the need for improving the practice of diagnostic and preventive strategies in SSc, Best Practice & Research Clinical Rheumatology, Vol: 35, Pages: 101707-101707, ISSN: 1521-6942

Journal article

Aronson K, Danoff SK, Russell A-M, Ryerson CJ, Suzuki A, Wijsenbeek MS, Bajwah S, Bianchi P, Corte TJ, Lee JS, Lindell KO, Maher TM, Martinez FJ, Meek PM, Raghu G, Rouland G, Rudell R, Safford MM, Sheth JS, Swigris JJet al., 2021, Patient-centered Outcomes Research in Interstitial Lung Disease An Official American Thoracic Society Research Statement: Executive Summary, AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, Vol: 204, Pages: 126-141, ISSN: 1073-449X

Journal article

Saketkoo LA, Russell A-M, Jensen K, Mandizha J, Tavee J, Newton J, Rivera F, Howie M, Reese R, Goodman M, Hart P, Strookappe B, De Vries J, Rosenbach M, Scholand MB, Lammi MR, Elfferich M, Lower E, Baughman RP, Sweiss N, Judson MA, Drent Met al., 2021, Health-Related Quality of Life (HRQoL) in Sarcoidosis: Diagnosis, Management, and Health Outcomes, DIAGNOSTICS, Vol: 11

Journal article

Richards DA, Sugg HV, Cockcroft E, Cooper J, Cruickshank S, Doris F, Hulme C, Logan P, Iles-Smith H, Melendez-Torres GJ, Rafferty AM, Reed N, Russell A-M, Shepherd M, Singh SJ, Thompson Coon J, Tooze S, Wootton S, Abbott R, Bethel A, Creanor S, Quinn L, Tripp H, Warren FC, Whear R, Bollen J, Hunt HA, Kent M, Morgan L, Morley N, Romanczuk Let al., 2021, COVID-NURSE: evaluation of a fundamental nursing care protocol compared with care as usual on experience of care for noninvasively ventilated patients in hospital with the SARS-CoV-2 virus-protocol for a cluster randomised controlled trial., BMJ Open, Vol: 11

INTRODUCTION: Patient experience of nursing care is correlated with safety, clinical effectiveness, care quality, treatment outcomes and service use. Effective nursing care includes actions to develop nurse-patient relationships and deliver physical and psychosocial care to patients. The high risk of transmission of the SARS-CoV-2 virus compromises nursing care. No evidence-based nursing guidelines exist for patients infected with SARS-CoV-2, leading to potential variations in patient experience, outcomes, quality and costs. METHODS AND ANALYSIS: we aim to recruit 840 in-patient participants treated for infection with the SARS-CoV-2 virus from 14 UK hospitals, to a cluster randomised controlled trial, with embedded process and economic evaluations, of care as usual and a fundamental nursing care protocol addressing specific areas of physical, relational and psychosocial nursing care where potential variation may occur, compared with care as usual. Our coprimary outcomes are patient-reported experience (Quality from the Patients' Perspective; Relational Aspects of Care Questionnaire); secondary outcomes include care quality (pressure injuries, falls, medication errors); functional ability (Barthell Index); treatment outcomes (WHO Clinical Progression Scale); depression Patient Health Questionnaire-2 (PHQ-2), anxiety General Anxiety Disorder-2 (GAD-2), health utility (EQ5D) and nurse-reported outcomes (Measure of Moral Distress for Health Care Professionals). For our primary analysis, we will use a standard generalised linear mixed-effect model adjusting for ethnicity of the patient sample and research intensity at cluster level. We will also undertake a planned subgroup analysis to compare the impact of patient-level ethnicity on our primary and secondary outcomes and will undertake process and economic evaluations. ETHICS AND DISSEMINATION: Research governance and ethical approvals are from the UK National Health Service Health Research Authority Research Ethics Ser

Journal article

Castro-Sanchez E, Russell AM, Dolman L, Wells Met al., 2021, What place does nurse-led research have in the COVID-19 pandemic?, INTERNATIONAL NURSING REVIEW, Vol: 68, Pages: 214-218, ISSN: 0020-8132

Journal article

Noth I, Cottin V, Chaudhuri N, Corte TJ, Johannson KA, Wijsenbeek M, Jouneau S, Michael A, Quaresma M, Rohr KB, Russell A-M, Stowasser S, Maher TM, INMARK trial investigatorset al., 2021, Home spirometry in patients with idiopathic pulmonary fibrosis: data from the INMARK trial, European Respiratory Journal, Vol: 58, Pages: 1-10, ISSN: 0903-1936

Data from the INMARK trial were used to investigate the feasibility and validity of home spirometry as a measure of lung function decline in patients with idiopathic pulmonary fibrosis (IPF).Subjects with IPF and preserved forced vital capacity (FVC) were randomised to receive nintedanib or placebo for 12 weeks followed by open-label nintedanib for 40 weeks. Clinic spirometry was conducted at baseline and weeks 4, 8, 12, 16, 20, 24, 36 and 52. Subjects were asked to perform home spirometry at least once a week and ideally daily. Correlations between home- and clinic-measured FVC and rates of change in FVC were assessed using Pearson correlation coefficients.In total, 346 subjects were treated. Mean adherence to weekly home spirometry decreased over time but remained above 75% in every 4-week period. Over 52 weeks, mean adherence was 86%. Variability in change from baseline in FVC was greater when measured by home rather than clinic spirometry. Strong correlations were observed between home- and clinic-measured FVC at all time-points (r=0.72 to 0.84), but correlations between home- and clinic-measured rates of change in FVC were weak (r=0.26 for rate of decline in FVC over 52 weeks).Home spirometry was a feasible and valid measure of lung function in patients with IPF and preserved FVC, but estimates of the rate of FVC decline obtained using home spirometry were poorly correlated with those based on clinic spirometry.

Journal article

, 2021, Palliative Care in Lung Disease, Publisher: Springer International Publishing, ISBN: 9783030817879

Book

Saketkoo LA, Alexanderson H, Lammi MR, LeSage D, Jensen K, Scholand MB, Volkmann ER, Russell A-Met al., 2020, An ode to the primal tonic of dance-congratulating the Life of Breath project, LANCET RESPIRATORY MEDICINE, Vol: 8, Pages: E90-E91, ISSN: 2213-2600

Journal article

Saketkoo LA, Alexanderson H, Lammi MR, LeSage D, Jensen K, Scholand MB, Volkmann ER, Russell A-Met al., 2020, An ode to the primal tonic of dance—congratulating the Life of Breath project, The Lancet Respiratory Medicine, Vol: 8, Pages: e90-e91, ISSN: 2213-2600

Journal article

Edwards C, Costello E, Cassidy N, Vick B, Russell A-Met al., 2020, Use of the patientMpower App With Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study, JMIR MHEALTH AND UHEALTH, Vol: 8, ISSN: 2291-5222

Journal article

Russell A-M, 2020, LETTER FROM ASIA-PACIFIC AND BEYOND Letter from the UK, RESPIROLOGY, Vol: 25, Pages: 1325-1327, ISSN: 1323-7799

Journal article

Drake TM, Docherty AB, Harrison EM, Quint JK, Adamali H, Agnew S, Babu S, Barber CM, Barratt S, Bendstrup E, Bianchi S, Castillo Villegas D, Chaudhuri N, Chua F, Coker R, Chang W, Crawshaw A, Crowley LE, Dosanjh D, Fiddler CA, Forrest IA, George PM, Gibbons MA, Groom K, Haney S, Hart SP, Heiden E, Henry M, Ho L-P, Hoyles RK, Hutchinson J, Hurley K, Jones MG, Jones S, Kokosi M, Kreuter M, Mackay LS, Mahendran S, Margaritopoulos G, Molina-Molina M, Molyneaux PL, O'Brien A, O'Reilly K, Packham A, Parfrey H, Poletti V, Porter JC, Renzoni E, Rivera-Ortega P, Russell A-M, Saini G, Spencer LG, Stella GM, Stone H, Sturney S, Thickett D, Thillai M, Wallis T, Ward K, Wells AU, West A, Wickremasinghe M, Woodhead F, Hearson G, Howard L, Baillie JK, Openshaw PJM, Semple MG, Stewart I, Jenkins RG, ISARIC4C Investigatorset al., 2020, Outcome of hospitalization for COVID-19 in patients with interstitial lung disease: an international multicenter study., American Journal of Respiratory and Critical Care Medicine, Vol: 202, Pages: 1656-1665, ISSN: 1073-449X

RATIONALE: The impact of COVID-19 on patients with Interstitial Lung Disease (ILD) has not been established. OBJECTIVES: To assess outcomes in patients with ILD hospitalized for COVID-19 versus those without ILD in a contemporaneous age, sex and comorbidity matched population. METHODS: An international multicenter audit of patients with a prior diagnosis of ILD admitted to hospital with COVID-19 between 1 March and 1 May 2020 was undertaken and compared with patients, without ILD obtained from the ISARIC 4C cohort, admitted with COVID-19 over the same period. The primary outcome was survival. Secondary analysis distinguished IPF from non-IPF ILD and used lung function to determine the greatest risks of death. MEASUREMENTS AND MAIN RESULTS: Data from 349 patients with ILD across Europe were included, of whom 161 were admitted to hospital with laboratory or clinical evidence of COVID-19 and eligible for propensity-score matching. Overall mortality was 49% (79/161) in patients with ILD with COVID-19. After matching ILD patients with COVID-19 had higher mortality (HR 1.60, Confidence Intervals 1.17-2.18 p=0.003) compared with age, sex and co-morbidity matched controls without ILD. Patients with a Forced Vital Capacity (FVC) of <80% had an increased risk of death versus patients with FVC ≥80% (HR 1.72, 1.05-2.83). Furthermore, obese patients with ILD had an elevated risk of death (HR 2.27, 1.39-3.71). CONCLUSIONS: Patients with ILD are at increased risk of death from COVID-19, particularly those with poor lung function and obesity. Stringent precautions should be taken to avoid COVID-19 in patients with ILD. This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial No Derivatives License 4.0 (http://creativecommons.org/licenses/by-nc-nd/4.0/).

Journal article

Drake TM, Docherty AB, Harrison EM, Quint JK, Adamali H, Agnew S, Babu S, Barber CM, Barratt S, Bendstrup E, Bianchi S, Villegas DC, Chaudhuri N, Chua F, Coker R, Chang W, Crawshaw A, Crowley LE, Dosanjh D, Fiddler CA, Forrest IA, George P, Gibbons MA, Groom K, Haney S, Hart SP, Heiden E, Henry M, Ho L-P, Hoyles RK, Hutchinson J, Hurley K, Jones M, Jones S, Kokosi M, Kreuter M, MacKay L, Mahendran S, Margaritopoulos G, Molina-Molina M, Molyneaux PL, OBrien A, OReilly K, Packham A, Parfrey H, Poletti V, Porter J, Renzoni E, Rivera-Ortega P, Russell A-M, Saini G, Spencer LG, Stella GM, Stone H, Sturney S, Thickett D, Thillai M, Wallis T, Ward K, Wells AU, West A, Wickremasinghe M, Woodhead F, Hearson G, Howard L, Baillie JK, Openshaw PJM, Semple MG, Stewart I, ISARIC4C Investigators, Jenkins RGet al., 2020, Outcome of hospitalisation for COVID-19 in patients with interstitial lung disease: an international multicentre study., Publisher: bioRxiv

Rationale: The impact of COVID-19 on patients with Interstitial Lung Disease (ILD) has not been established. Objectives: To assess outcomes following COVID-19 in patients with ILD versus those without in a contemporaneous age, sex and comorbidity matched population. Methods: An international multicentre audit of patients with a prior diagnosis of ILD admitted to hospital with COVID-19 between 1 March and 1 May 2020 was undertaken and compared with patients, without ILD obtained from the ISARIC 4C cohort, admitted with COVID-19 over the same period. The primary outcome was survival. Secondary analysis distinguished IPF from non-IPF ILD and used lung function to determine the greatest risks of death. Measurements and Main Results: Data from 349 patients with ILD across Europe were included, of whom 161 were admitted to hospital with laboratory or clinical evidence of COVID-19 and eligible for propensity-score matching. Overall mortality was 49% (79/161) in patients with ILD with COVID-19. After matching ILD patients with COVID-19 had higher mortality (HR 1.60, Confidence Intervals 1.17-2.18 p=0.003) compared with age, sex and co-morbidity matched controls without ILD. Patients with a Forced Vital Capacity (FVC) of <80% had an increased risk of death versus patients with FVC ≥80% (HR 1.72, 1.05-2.83). Furthermore, obese patients with ILD had an elevated risk of death (HR 1.98, 1.13−3.46). Conclusions: Patients with ILD are at increased risk of death from COVID-19, particularly those with poor lung function and obesity. Stringent precautions should be taken to avoid COVID-19 in patients with ILD.

Working paper

Kim JW, Olive S, Jones S, Thillai M, Russell A-M, Johnson MJ, Wilson Aet al., 2020, Interstitial lung disease and specialist palliative care access: a healthcare professionals survey., BMJ Support Palliat Care

BACKGROUND: Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals' perspectives. METHODS: A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions. RESULTS: Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams. CONCLUSIONS: Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.

Journal article

Saketkoo LA, Scholand MB, Lammi MR, Russell A-Met al., 2020, Patient-reported outcome measures in systemic sclerosis-related interstitial lung disease for clinical practice and clinical trials, JOURNAL OF SCLERODERMA AND RELATED DISORDERS, Vol: 5, Pages: 48-60, ISSN: 2397-1983

Journal article

Moor CC, Wijsenbeek MS, Balestro E, Biondini D, Bondue B, Cottin V, Flewett R, Galvin L, Jones S, Molina-Molina M, Planas-Cerezales L, Prasse A, Prosch H, Russell A-M, Viegas M, Wanke G, Wuyts W, Kreuter M, Bonella Fet al., 2019, Gaps in care of patients living with pulmonary fibrosis: a joint patient and expert statement on the results of a Europe-wide survey, ERJ Open Research, Vol: 5, Pages: 1-11, ISSN: 2312-0541

Introduction Pulmonary fibrosis (PF) and its most common form, idiopathic pulmonary fibrosis (IPF), are chronic, progressive diseases resulting in increasing loss of lung function and impaired quality of life and survival. The aim of this joint expert and patient statement was to highlight the most pressing common unmet needs of patients with PF/IPF, putting forward recommendations to improve the quality of life and health outcomes throughout the patient journey.Methods Two online surveys for patients and healthcare professionals (HCPs) were conducted by the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation (EU-IPFF) in 14 European countries.Results The surveys were answered by 286 patients and 69 HCPs, including physicians and nurses. Delays in diagnosis and timely access to interstitial lung disease specialists and pharmacological treatment have been identified as important gaps in care. Additionally, patients and HCPs reported that a greater focus on symptom-centred management, adequate information, trial information and increasing awareness of PF/IPF is required.Conclusions The surveys offer important insights into the current unmet needs of PF/IPF patients. Interventions at different points of the care pathway are needed to improve patient experience.

Journal article

Boniske T, Russell A-M, Bender E, Lian I, Palomino J, Parada N, Rahaghi F, Kaul P, Henderson A, Shah N, Robinett K, Doty J, Saketkoo Let al., 2019, COMPASSION CULTIVATION SKILL TRAINING IN MEDICINE: CONTROLLED SKILL-BUILDING INTERVENTION TRIAL IN PULMONARY CRITICAL CARE FELLOWS, CHEST Annual Meeting, Publisher: ELSEVIER, Pages: 1016A-1017A, ISSN: 0012-3692

Conference paper

van Manen MJG, Birring SS, Vancheri C, Odink AE, Hussain B, Vindigni V, Renzoni E, Russell A-M, Wapenaar M, Cottin V, Wijsenbeek MSet al., 2019, Predictors of objective cough in patients with idiopathic pulmonary fibrosis (IPF), European-Respiratory-Society (ERS) International Congress, Publisher: EUROPEAN RESPIRATORY SOC JOURNALS LTD, ISSN: 0903-1936

Conference paper

Russell A-M, Datta A, Newell K, Jones S, Conway J, Saktkoo LA, Wickremasinghe Met al., 2019, Development of a patient reported experience measure (PREM) for idiopathic pulmonary fibrosis (IPF), European-Respiratory-Society (ERS) International Congress, Publisher: EUROPEAN RESPIRATORY SOC JOURNALS LTD, ISSN: 0903-1936

Conference paper

Maher T, Cottin V, Russell A-M, Corte T, Hammerl P, Michael A, Rohr KB, Quaresma M, Stowasser S, Noth Iet al., 2019, Correlation between home and clinic spirometry in subjects with IPF: results from the INMARK trial, European-Respiratory-Society (ERS) International Congress, Publisher: EUROPEAN RESPIRATORY SOC JOURNALS LTD, ISSN: 0903-1936

Conference paper

Russell A, Shone A, Love M, Shanagher D, Byrne I, Fox L, Korn B, Doyle A, Cassidy Net al., 2019, A World Cafe Approach to Palliative Care and Planning for the Future in Fibrotic Lung Disease, International Conference of the American-Thoracic-Society, Publisher: AMER THORACIC SOC, ISSN: 1073-449X

Conference paper

Russell AM, Wickremasinghe M, Renzoni E, Adamali H, Borril Z, Fletcher S, Maher TM, Kwong GNM, Saketkoo LA, Fleming S, Cullinan Pet al., 2018, THE IDIOPATHIC PULMONARY FIBROSIS PATIENTS REPORTED OUTCOME MEASURE (IPF-PROM) IS RELIABLE AND VALID FOR USE IN POPULATIONS WITH IPF, Winter Meeting of the British-Thoracic-Society, Publisher: BMJ PUBLISHING GROUP, Pages: A47-A47, ISSN: 0040-6376

Conference paper

Visca D, Mori L, Tsipouri V, Fleming S, Firouzi A, Bonini M, Pavitt MJ, Alfieri V, Canu S, Bonifazi M, Boccabella C, De Lauretis A, Stock CJW, Saunders P, Montgomery A, Hogben C, Stockford A, Pittet M, Brown J, Chua F, George PM, Molyneaux PL, Margaritopoulos GA, Kokosi M, Kouranos V, Russell AM, Birring SS, Chetta A, Maher TM, Cullinan P, Hopkinson NS, Banya W, Whitty JA, Adamali H, Spencer LG, Farquhar M, Sestini P, Wells AU, Renzoni EAet al., 2018, Effect of ambulatory oxygen on quality of life for patients with fibrotic lung disease (AmbOx): a prospective, open-label, mixed-method, crossover randomised controlled trial, Lancet Respiratory Medicine, Vol: 6, Pages: 759-770, ISSN: 2213-2600

BACKGROUND: In fibrotic interstitial lung diseases, exertional breathlessness is strongly linked to health-related quality of life (HRQOL). Breathlessness is often associated with oxygen desaturation, but few data about the use of ambulatory oxygen in patients with fibrotic interstitial lung disease are available. We aimed to assess the effects of ambulatory oxygen on HRQOL in patients with interstitial lung disease with isolated exertional hypoxia. METHODS: AmbOx was a prospective, open-label, mixed-method, crossover randomised controlled clinical trial done at three centres for interstitial lung disease in the UK. Eligible patients were aged 18 years or older, had fibrotic interstitial lung disease, were not hypoxic at rest but had a fall in transcutaneous arterial oxygen saturation to 88% or less on a screening visit 6-min walk test (6MWT), and had self-reported stable respiratory symptoms in the previous 2 weeks. Participants were randomly assigned (1:1) to either oxygen treatment or no oxygen treatment for 2 weeks, followed by crossover for another 2 weeks. Randomisation was by a computer-generated sequence of treatments randomly permuted in blocks of constant size (fixed size of ten). The primary outcome, which was assessed by intention to treat, was the change in total score on the King's Brief Interstitial Lung Disease questionnaire (K-BILD) after 2 weeks on oxygen compared with 2 weeks of no treatment. General linear models with treatment sequence as a fixed effect were used for analysis. Patient views were explored through semi-structured topic-guided interviews in a subgroup of participants. This study was registered with ClinicalTrials.gov, number NCT02286063, and is closed to new participants with all follow-up completed. FINDINGS: Between Sept 10, 2014, and Oct 5, 2016, 84 patients were randomly assigned, 41 randomised to ambulatory oxygen first and 43 to no oxygen. 76 participants completed the trial. Compared with no oxygen, ambulatory oxygen was ass

Journal article

Cassidy N, O'Dowd G, McGowan M, Shone T, Russell A-Met al., 2018, Evaluation of a World Cafe Forum on Palliative Care and Planning for the Future., Publisher: SPRINGER LONDON LTD, Pages: S265-S266, ISSN: 0021-1265

Conference paper

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