Baseline Eight Months later
12 months later later
Minimal Dependency Unit I feel absolutely wretched as though all my available energy has almost run out
Diagnosis & Co-morbidities Bronchoscopy* Bespoke cardiac investigations Rheumatology Review Dietician Review Gastroenterology Referral Physiotherapy lung health Palliative Care patient
Multi-Disciplinary & Inter-Disciplinary Teams
Management??Treatment?? Lung Transplantation Oxygen Therapy Pulmonary Rehabilitation Palliation Advance care planning Benzodiazepines PE prophylaxis? Simple Anti oxidant Pirfenidone Treating Reflux Infection prophylaxis Treating anxiety Treating depression
Cystic Fibrosis 75 (30%) Pulmonary Hypertension 9(4%) Lung and heart transplantation 2003-10 Alpha 1 29 (12%) Re-Transplant 2 (1%) Other 10 (4%) Fibrosis 37 (15%) Emphysema 85 (34%) Mortality rate 30%
Benefits of Brompton Model Patients reassured by attending centre of excellence Tertiary centre affect on Anxiety scores Comprehensive Work up under one roof Cost effective / Time effective MDT: Clinical Discussion / Debate Excellent opportunity for teaching / learning Ward Round individualised information & Support Family / significant others included Diagnostic Certainty?? Informed discussion re VATS lung biopsy Participation in Research
Staff education Seminar series weekly research /clinical topics in all respiratory areas including: asthma, ILD, COPD, sleep & epidemiology Lecture series Grand Round, external speakers Annual Margaret Turner Warwick Respiratory Lecture Advances in respiratory medicine a state-of-the-art respiratory course for clinicians with a focus on excellence in clinical care supported by the latest cutting edge research delivered by leaders at Imperial & the Brompton
Staff education Lung failure Masters level module a broad understanding of lung failure, including the causes & complications in critical illness & acute-on-chronic lung failure. Students also develop in-depth knowledge & understanding of either extra-corporeal lung support (ECLS) or non-invasive ventilation (NIV) MSc Cardiorespiratory Nursing (part-time 24 months) designed to provide up to date knowledge & identify the evidence upon which to base both current and future practice Academically challenging & takes an innovative approach to cardio-respiratory nursing - placing research & dissemination squarely alongside familiar management, practical & teaching roles at senior clinical level
MSc Cardiorespiratory Nursing Cardiac Nursing anatomy & physiology, pathophysiology, cardiovascular disease, the management of arrythmias, the management of heart failure, adult congenital heart disease Respiratory Nursing anatomy & physiology, pathophysiology, the management of the patient with asthma, managing breathlessness, end-of life care & oxygen therapy Cystic Fibrosis Lung Failure Heart Failure Clinical examination & history taking Resuscitation Smoking Cessation Policy and practice Evidence based health care Applied Healthcare research I and II PhD Study Senior Clinical Career
MRes Clinical Research - Clinical Research Design &Management Pathway The principal intention of the Mres pathway is to create a route into clinical research for Nurses and Allied Healthcare Professionals (AHPs) to enable them to design and implement clinical research and independently manage research projects The programme covers a broad spectrum of clinical specialities including oncology, metabolic medicine, cardiovascular medicine, and neuroscience. The opportunity to specialise in one area is provided through the research project. Students are exposed to clinical research in nursing specialities including palliative care, communication, healthcare management and infection control.
Influencing Nursing Research & Clinical Development Quality Assurance for Diagnostic Spirometry NHS England Working Group competency framework British Thoracic Soceity Allied Health Professional Health Care Scientists & Nursing Research committee Annual Research Poster Presentation Event Competency Framework for Clinical Research Nurses New Perspectives in Interstitial Lung Disease: A Multidisciplinary Approach (2 day short course) NHLI London Southbank Respiratory module under / post grad
Association Respiratory Nurses Created in 1997 by respiratory nurses for respiratory nurses remains exclusively nurse led Current membership > 1,000 Committee members respiratory nurse specialists clinical / academic Financed through sponsorship Works collaboratively to influence policy and professional / academic development
Active Research Effect of Lebrikizumab with IPF monoclonal antibody Dose Escalation PI3 kinase inhibitor GSK2126458 Pomalidomide (CC-4047) in Systemic Sclerosis with Interstitial Lung Disease Efficacy of Simtuzumab GS-6624 in slowing disease progression IPF PASSPORT Esbriet in mild / moderate IPF PROFILE Biomarker / HRQoL / home spirometry IPF-PRoM Instrument Development
Pathogenesis of IPF Repetitive alveolar epithelial injury results in degradation of the basement membrane & activation of key pathways involved in the wound-healing response
Pending Research Anti-LOX and anti-loxl2 antibodies Dose variation of SAR 156597 in IPF RCT comparing Rituximab against intravenous Cyclophosphamide in Connective Tissue Disease (CTD) associated Interstitial Lung Disease (ILD) Concluding Research Nintedanib (BIBF 1120) in IPF Safety and Efficacy of QAX576 in IPF terminated
No concise standardised disease specific approach to symptom monitoring
Goals of Management Anxiety Fatigue Cough Breathlessness Palliation
Why do we need a patient Reported Outcome Measure for IPF? The [NICE] guideline addresses the timing frequency & nature of tests that inform diagnosis & prognosis. It addresses the value of drugs...& interventions...including oxygen therapy, pulmonary rehabilitation & palliation of breathlessness & cough...for which, as yet there is a paucity of evidence Despite the significant burden of disease caused by IPF, there is no established framework within the NHS for its diagnosis & management, creating an environment in which significant variations in clinical care occur NICE Clinical Guideline (2013) Diagnosis & management of suspected Idiopathic Pulmonary Fibrosis
Instruments used in IPF SGRQ, St George s Respiratory Questionnaire; SF-36, Medical Outcomes Study Short Form-36 WHOQOL-100, WHO Quality of Life 100 Item Instrument LCQ - Leicester Cough Questionnaire HADs Hospital Anxiety & Depression Scale D12 - Dyspnoea Scale (generic) K-BILD King s Brief health status in ILD ATAQ A tool to Assess Quality of Life in IPF
ATAQ-IPF v2 Robust development 86 items across 13 domains: Cough Dyspnoea Forethought Sleep Mortality Exhaustion Finances Emotional well-being Independence Relationships Therapies Social participation Sexual Health PROFILE will test the longitudinal validity NB clinical utility
Multivariate regression demonstrates an independent relationship between change in FVC from BL & the SGRQ total score (p=0.002) & the HADs depression component (p=0.001) Strongest correlations were observed with the SGRQ (Rˢ-0.40 p=0.0026) & the depression component of the HADS (Rˢ-0.47 p=0.0028)
FG stratified for Disease Severity CPI & O2 Manchester Focus Groups x5 n=30 Bristol London Deconstructed items Nominal Group Research Support Group Role
Delphi Survey Early Stage IPF Mid Stage IPF Late Stage IPF Professional Group Terms of Reference