SCOPING RESEARCH ON MODELS OF CARE TO SUPPORT EARLIER DIAGNOSIS OF DISEASES RELATED TO BREATHLESSNESS AS A SYMPTOM Peter J Aspinall Bayswater Institute and University of Kent August 2014 1 Contents Acknowledgements 3 Executive Summary 4 Key messages 7 1. Introduction 9 1.1 Background and context 9 1.1.1 Living Longer Lives 9 1.1.2 Breathlessness 10 1.2 Research requirements 11 1.2.1 Objectives 11 1.2.2 Research Questions 11 2. Methods 12 3. Results 13 3.1 Early diagnosis 13 3.1.1 COPD 13 3.1.2 Lung cancer 17 3.1.3 Asthma 21 3.1.4 Obesity 27 3.1.5 Patient experience 27 3.2 The ‘rapid access clinic’ model 31 3.2.1 Rapid access chest pain clinics 31 3.2.2 Rapid access clinics for arrhythmias, blackouts, palpitations, & murmur 40 3.2.2.1 Rapid access palpitations clinics 41 3.2.2.2 Rapid access blackout clinics 42 3.2.2.3 Rapid Access Arrhythmia/Atrial Fibrillation Clinics 44 3.2.2.4 Heart Murmur Clinics 46 3.2.3 The first long-term findings of rapid access clinics 47 3.3 Breathlessness 49 3.3.1 Symptom-based vs disease-based approach to assessment and diagnosis 50 3.3.2 Investment and disinvestment decisions for breathlessness 53 services: prerequisites 3.3.3 What is needed to assess breathlessness 54 3.3.4 Examples of current models 55 3.3.5 Pathways 60 4. Discussion and Conclusions 65 2 Acknowledgements This study was commissioned by NHS Improving Quality (NHS IQ) from the Bayswater Institute, a small independent research institute and charity founded in 1991 that focuses on the implementation of policies within organisations, the dissemination of new practices, and the management of organisational change. It has over 20 years’ experience of work within the NHS on organisational change and in particular the adoption of new health technologies. The principal investigator for the study is Peter Aspinall, Senior Analyst at the Bayswater Institute and Emeritus Reader in Population Health in the Centre for Health Services Studies, University of Kent. Thanks are due to Vanessa Brown and Mel Varvel of NHS IQ and Professor William Maton-Howarth and Professor Ken D Eason of the Bayswater Institute for helpful comments on a draft of this report. I am also grateful to: Siân Williams, Executive Officer of the International Primary Care Respiratory Group and Member of the London Respiratory Clinical Leadership Group, for an opportunity to discuss the IMPRESS algorithm, and to Wendy Fairhurst and Jay Mangan for information about the NHS Ashton, Leigh and Wigan proposal for diagnosing breathlessness. 3 Executive Summary The scoping research was framed around a number of questions: (i) What evidence or good practice exists on early diagnosis and its impact on the quality of patient care (patient safety, outcomes and experience) and costs to the health service? (ii) What evidence, evaluation and/or models are there for diagnosis of disease from a symptom-based perspective? (iii) What models, standards, guidelines or good practice already exist for ‘rapid’ access to diagnostics generally, e.g. Rapid Access Chest Pain Clinics? (iv) What evidence, evaluation and/or models are there for diagnosing disease by focusing on breathlessness in particular as a symptom? Are there any rapid access breathlessness clinics and/or diagnostic pathways for breathlessness already in existence or in development? With respect to early diagnosis, the following conditions where breathlessness is a symptom - Chronic Obstructive Pulmonary Disease (COPD), Lung Cancer, Asthma, Obesity, Heart Failure, and Atrial Fibrillation - were investigated. With respect to COPD, the literature identified a range of examples, including targeted case finding vs open spirometry and use of new diagnostic technologies. The searches for literature on the early diagnosis of lung cancer yielded the example of the instigation of a multidisciplinary lung investigation day in a Birmingham trust which was associated with significant reductions in the number of patients requiring bronchoscopy and in the time from presentation at the rapid access clinic to both histological diagnosis and presentation to the multidisciplinary team meeting. Prompt access to radiology and pathology services was found to be key. The literature on the early diagnosis of asthma and obesity yielded few relevant examples, except in children and that on early diagnosis of cardiac conditions is addressed in the section on rapid access clinic models. The literature provides examples of models, standards, and good practice that already exist for ‘rapid’ access to diagnosis of disease from a symptom-based perspective, notably, chest pain, atrial fibrillation, blackouts, palpitations, breathlessness, and murmur. There are many rationales for rapid access chest pain clinics (RACPCs), including inappropriateness of some emergency department referrals; diagnostic delay resulting from outpatient appointment waiting lists; and most general practitioners’ (GPs) insufficient confidence in interpreting exercise tolerance test (ETT) results and difficulty in diagnosing coronary artery disease if symptoms are non-specific / vague or if the disease is silent. The primary objective of these clinics is ‘to help ensure that people who develop new symptoms that their GP thinks might be due to angina can be assessed by a specialist within two weeks of referral’. Amongst findings relevant to the configuration of diagnostic services for breathlessness, RACPCs effectively identify patients at increased coronary risk but fail to correctly diagnose all patients. Long- term review data show that diagnoses with a cardiac cause for chest pain, non-cardiac chest pain, and other diagnoses remained in a narrow range, suggesting consistent patterns of diagnosis. The major purpose of rapid assessment of chest pain is that it should provide access to invasive investigation equitably for all patients in whom it is indicated, though inequities exist with respect to access, referrals for coronary angiography, and use of ETT, suggesting suboptimal outcomes. RACPCs should substitute for existing services and reduce to zero referrals to outpatient cardiology clinics (OPCCs), though these are continuing at a reduced level. An appointments system and clear guidelines are needed to secure appropriate referrals. Lack of staff prevents RACPCs from offering an open access daily service. Standardisation of data collection is needed to facilitate the running of RACPCs, auditing, and provision of a core dataset. The best skill-mix for clinics and allocation of functions requires investigation in the context of costs, clinical management and diagnosis, and continuity of care. Finally, more rapid assessment of patients with chest pain might require increasing levels of awareness among the general population about the significance of new onset chest pain. 4 The rationale for rapid access clinics for arrhythmia, atrial fibrillation, palpitations, blackouts, and murmur are similar. Rapid access arrhythmia clinics provide a rapid diagnosis, stratify risk, and enable prompt initiation of evidence-based treatments for patients presenting with suspected new cardiac arrhythmias. Stable patterns of diagnosis over a decade have been reported. Rapid access palpitations clinics are effective at establishing a range of common diagnoses, though with a longer time from referral to assessment. Rapid access blackouts clinics effectively distinguish between epilepsy, syncope and psychogenic causes, though diagnosis is elusive in up to 40% of cases, without the need for onward specialist referral; provide rapid triage to the right care pathway; and avoid overreliance on more sophisticated investigations. No substantive studies have been identified of heart murmur clinics. All these clinics are generally viewed positively by patients and primary care physicians. There are a number of models in existence or being developed for diagnosing disease by focusing on breathlessness as a symptom, including rapid access breathlessness clinics and diagnostic pathways for breathlessness. Rationales for developing breathlessness clinics include the fact that care pathways for aspects of breathlessness tend to be disease-specific and do not take satisfactory account of multi- morbidity, though cost-effectiveness data is lacking. Harmonisation of approaches across diseases is needed to reduce current unwarranted variation in diagnostic rates, systematic review evidence having shown that cross-boundary working can increase the speed of diagnosis. Such clinics have the potential to focus diagnostic services on symptoms at the point where people present to primary care, to address multi-morbidity, and the complex interaction and need for parity of esteem between mental and physical health. Prerequisites for investment/disinvestment decision-making with regard to configuring breathlessness services, as suggested by IMPRESS1, include a need for a shared knowledge of the evidence base, consideration of where breathlessness services should be located, a ‘decision conference’ to develop symptom-based pathways with local experts, encouragement and fostering of integration across specialties, and assessment of local provision against the IMPRESS algorithm, an evidence-based integrated approach to assessment and treatment for breathlessness. New breathlessness services may be configured by the redesign of breathless diagnostic and assessment pathways; the commissioning of new services like dedicated earlier diagnosis breathlessness clinics; and the provision of such assessment services by all practices vs. selected