Following on from our groundbreaking work that analysed the relative value of interventions for a COPD population, IMPRESS decided to take on a new project. It decided to work with the London School of Economics again to apply the same STAR methodology to identify the relative value of interventions for a common symptom that matters to patients. We hypothesised that a symptom-based approach would:
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Be a more patient-focused approach than a disease-based approach
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Be more aligned to a holistic patient-centred approach
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Introduce multiple morbidities into the discussions
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Engage a wider range of clinicians from more than one specialty
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Take everyone “out of the box” and therefore potentially lead to innovative thinking about how best to practise population medicine and achieve the greatest health gain/improvement in health outcomes
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Answer some of the questions that commissioners are already asking about the right balance of generic and disease-specific services for people with long term conditions and how best to address the issues of comorbidities where, for example, it has been estimated only 14-18% of people with COPD only have COPD and when actively assessed for co-morbidities it may be as low as 3%.
There were a number of common respiratory symptoms that we could have chosen, but we decided that the one that is a high priority on patient agendas, is closest to our previous work and sufficiently prevalent in the population to warrant a service, was chronic breathlessness in adults.
The few epidemiological studies available seem to point in the direction that chronic breathlessness affects about 10% of the general population, but the magnitude of the problem is greater in specific groups of the population, such as the elderly with about 30% of them being breathless. Despite these significant prevalence rates, breathlessness is mentioned as a reason for encounter in primary care in about 1% of the recorded consultations in general practice. Whether this figure is affected by coding behaviour in primary care or under-reporting of the symptom by patients is for discussion.
We have produced a summary of our conclusions in the form of BITs: Breathlessness IMPRESS tips. There are BITs for patients, clinicians, commissioners of services and also researchers, but we are launching those for clinicians first. They are accompanied by an algorithm to support clinicians and patients. They will be followed by detailed modelling of prevalence and incidence and background epidemiological papers.
It has been an intellectually challenging piece of work. The cost-effectiveness evidence-base that we found for COPD does not exist for chronic and disabling breathlessness and therefore there is significant uncertainty. We needed to agree on a definition of breathlessness, identify the main underlying causes and bring together prevalence and incidence data for these causes: COPD, uncontrolled asthma, heart failure, anaemia, and obesity, singly or in combination and with or without anxiety, and distinguish between chronic and acute breathlessness. It seems as though some basic truths have been “blind-spots” in the research literature. For example, most patients and clinicians would say that breathlessness is a relatively common symptom for obese people (a belief also confirmed by the epidemiological data available, which show that about 50% of obese patients are breathless and up to 70% of obese elderly complain of some degree of breathlessness) and yet the recent excellent Royal College of Physicians Action on Obesity report has one mention and no discussion of breathlessness. In heart failure breathlessness may not be the cardinal symptom, which might be tiredness, however, the literature suggests up to 93% of people with heart failure, mainly elderly, suffer from breathlessness. The sensation may be perceived by the individual as part of their normal ageing process. We had many debates about when breathlessness is disabling and warrants an intervention and what that intervention should be.
The interaction between breathlessness and anxiety is complex and so this is another reason why this project has been worth doing, because it forces discussions about the interaction between mental and physical health and highlights the need for healthcare professionals to have skills to promote both. For example, panic disorder is ten times more common in the population with COPD than in the general population. However, anxiety is under-diagnosed and under- treated in primary care despite strong evidence of the effectiveness of talking therapies.
There are few straightforward answers when you combine general practice, community and hospital clinicians from different specialties and disciplines to reach consensus about coding, symptom-scoring, patient and population interventions though much learning. It is also challenging when you bring together literature from medicine, psychology, and public health. There are also few examples of symptom-based services in operation and even fewer examples of how these are commissioned; that is, how they are paid for or monitored. However, we have reached some conclusions that could make a difference today to people with chronic and disabling breathlessness. We also have a reasonably long list of research questions that we encourage academic health science networks to investigate. We see this as the beginning of a debate about how to best set up a breathlessness service for a population. We welcome feedback, examples of good practice, and case studies and urge those setting up services to evaluate their cost and their outcomes, and to publish their findings.
One of our conclusions is that local breathlessness services and pathways will need to grow from what already exists provided by health and local authorities, and also will depend on the local populations’ needs and health status. Disabling breathlessness is more common in deprived populations. Therefore we would encourage the local stakeholders involved in developing, approving and implementing joint strategic needs assessments to use our work as the basis for a local (and ultimately electronic) version.
What is certain is that the service will need to integrate mental and physical health pathways and services, and a common and consistent approach to behaviour change across a number of health specialties and public health. It is also certain that the normal consultation arrangements are not fit for purpose to assess a breathless person. We strongly recommend that services review the tests of change that a number of areas are undertaking to provide longer appointments in long term conditions in both primary and out-patients settings. We also want to reinforce the power of taking time with the patient to take a full history, once the immediate decision about whether to admit a patient has been made. At an individual level, always be mindful of three dimensions: the person’s mental health, their social context as well as their physical health, remember that breathlessness is not always caused by one single factor and that all breathlessness is stressful to some extent; the question is to what extent.
For a referenced version of this blog/introduction go here
Also available:
IMPRESS Breathlessness algorithm
IMPRESS BITs for clinicians
IMPRESS BITs for patients
IMPRESS BITs for commissioners
IMPRESS BITs for researchers
IMPRESS guide to breathlessness methodology scope definitions prevalence
Summary prevalence tables
IMPRESS Working Party on Breathlessness
December 2013 updated February 2014
IMPRESS Breathlessness Working Party
Dr Noel Baxter, GP, Southwark
Dr Angel Chater, Registered Health Psychologist and Sport and Exercise Psychologist, Lecturer in Behavioural Medicine UCL School of Pharmacy Centre for Behavioural Medicine
Dr Mark Dancy, Consultant Cardiologist, North West London Hospitals Trust
Dr Sarah Elkin, Lead in Respiratory Medicine at Imperial College NHS Trust and Honorary Senior Lecturer at Imperial College London
Professor Ahmet Fuat, Professor of Primary Care Cardiology, Durham University, GP, GP Tutor and GPSI Cardiology, Darlington
Dr Steve Holmes, GP Shepton Mallet, Co-chair of IMPRESS
Professor Mike Kirby, Visiting Professor University of Hertfordshire, UK Editor Primary Care Cardiovascular Journal
Dr Basil Penney, GP, Darlington, GPSI Respiratory Medicine and GP Respiratory Lead, Darlington Clinical Commissioning Group
Dr Louise Restrick, Integrated Consultant Respiratory Physician, Whittington Health and Islington CCG, London Respiratory Network Lead
Sam Roberts, Director of Community Academic Partnerships, UCLPartners
Jane Scullion, Respiratory Nurse Consultant University Hospitals of Leicester NHS Trust, Respiratory Clinical Lead Midlands and East
Dr Shahrad Taheri, Bariatric physician and lead for weight management services and senior lecturer in Medicine, University of Birmingham, Birmingham Heartlands Hospital and Royal College of Physicians Action on Obesity nominee
Writers:
Chiara De Poli, Department of Management, London School of Economics and Political Science
Siân Williams, IMPRESS Programme Manager
Original meeting facilitated by: Mara Airoldi, Department of Management, London School of Economics and Political Science
With additional contributions from:
Dr Suzanna Hardman, Consultant Cardiologist with an Interest in Community Cardiology, Whittington Health, Honorary Senior Lecturer UCL
Dr David Kingdon, Professor of Mental Health Care Delivery University of Southampton, representing National Clinical Director, Mental Health
Dr Mike Ward, Consultant Respiratory Physician, Co-chair IMPRESS
Dr Vince Mak, Integrated Care Consultant, North West London Hospitals Trust
Maria Buxton, Consultant Respiratory Physiotherapist, North West London Hospitals Trust and Ealing Hospital Trust, Brent
Helen Marlow, Pharmaceutical Adviser NHS England (London)
Sandy Walmsley, Respiratory Nurse Specialist, Solihull Care Trust
Dr Rob Fowler, Consultant physician in respiratory, general and geriatric medicine, Barking Havering and Redbridge University Hospitals NHS Trust
Dr Matt Kearney, Department of Health England
Leah Herridge, Redesign Manager (Long Term Conditions) Pathway Commissioning, NHS Southwark Clinical Commissioning Group
Mark da Rocha, Service Redesign & Primary Care Development; CVD Lead, NHS Lambeth & Southwark Clinical Commissioning Groups
Dr Eric Cajeat, NHS Lambeth Clinical Commissioning Group
The Health Foundation, registered charity number 286967, funded the LSE team and the design of the algorithm
Thanks to these organisations for their support
BTS: http://www.brit-thoracic.org.uk/
Health Foundation: http://www.health.org.uk/
PCRS-UK: http://www.pcrs-uk.org/
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