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1 Breathlessness IMPRESS Tips (BITs) For clinicians These Breathlessness IMPRESS Tips (BITs) are one of a set of four BITs based on an IMPRESS programme to develop guidance for clinicians, commissioners, patients and researchers about how to improve services for the adult population disabled by breathlessness. These BITs offers guidance to clinicians (doctors, nurses, physiotherapists, psychologists and others) working in general practice and community and hospital environments about how to take a symptom-based approach to assessment and care of adults, and the advantages it offers in terms of tackling multi-morbidity and the complex interaction between mental and physical health, and the capabilities, opportunities and motivation for healthy or unhealthy behaviours, and the challenges it uncovers in terms of lack of evidence, and the need to dismantle or adapt existing pathways. They are in the sequence of an accompanying algorithm. We have created a separate digital algorithm and here also offer some detailed “how to” guidance on how to use it. They build on previous IMPRESS work also undertaken with the London School of Economics on the relative value of different interventions for chronic obstructive pulmonary disease (COPD), 1 and previous IMPRESS work on More for Less. 2 There is a list of further reading at the end, including the other elements of the IMPRESS programme on breathlessness. Breathlessness IMPRESS Tips (BITs) for clinicians: adapt to local context 1. Assume any patient seeking help for breathlessness has an acute component, even where there is a pre-existing diagnosis of a chronic condition. 2. Breathlessness is subjective and relative: compared to when, to whom? Because breathlessness is subjective, diagnosing the cause(s) of new or gradually deteriorating 1 IMPRESS Guide to the relative value of interventions for people with COPD A population-based approach to improving outcomes for people with chronic obstructive pulmonary disease based on the cost of delivering those outcomes. Williams S et al. BTS Reports. Vol 4. Issue 2. 2012 www.impressresp.com 2 IMPRESS Guide to More for Less, July 2010 www.impressresp.com

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Page 1: Breathlessness IMPRESS Tips for clinicians FINAL 2014-01-09 · 2014. 1. 16. · 1 Breathlessness IMPRESS Tips (BITs) For clinicians These Breathlessness IMPRESS Tips (BITs) are one

 

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Breathlessness IMPRESS Tips (BITs) For clinicians These Breathlessness IMPRESS Tips (BITs) are one of a set of four BITs based on an IMPRESS programme to develop guidance for clinicians, commissioners, patients and researchers about how to improve services for the adult population disabled by breathlessness. These BITs offers guidance to clinicians (doctors, nurses, physiotherapists, psychologists and others) working in general practice and community and hospital environments about how to take a symptom-based approach to assessment and care of adults, and the advantages it offers in terms of tackling multi-morbidity and the complex interaction between mental and physical health, and the capabilities, opportunities and motivation for healthy or unhealthy behaviours, and the challenges it uncovers in terms of lack of evidence, and the need to dismantle or adapt existing pathways. They are in the sequence of an accompanying algorithm. We have created a separate digital algorithm and here also offer some detailed “how to” guidance on how to use it. They build on previous IMPRESS work also undertaken with the London School of Economics on the relative value of different interventions for chronic obstructive pulmonary disease (COPD),1 and previous IMPRESS work on More for Less.2 There is a list of further reading at the end, including the other elements of the IMPRESS programme on breathlessness. Breathlessness IMPRESS Tips (BITs) for clinicians: adapt to local context

1. Assume any patient seeking help for breathlessness has an acute component, even where there is a pre-existing diagnosis of a chronic condition.

2. Breathlessness is subjective and relative: compared to when, to whom? Because breathlessness is subjective, diagnosing the cause(s) of new or gradually deteriorating 1 IMPRESS Guide to the relative value of interventions for people with COPD A population-based approach to improving outcomes for people with chronic obstructive pulmonary disease based on the cost of delivering those outcomes. Williams S et al. BTS Reports. Vol 4. Issue 2. 2012 www.impressresp.com 2 IMPRESS Guide to More for Less, July 2010 www.impressresp.com

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breathlessness is often not easy. Taking a good history and thorough examination are the first and most important things you can do. Address three dimensions of history: physical health, mental health and social context. Assume that all patients who suffer from chronic breathlessness are stressed/anxious to some extent. Remember some of the anxiety may relate to a failure of adequate diagnosis and/or treatment of the breathlessness. Consider supplementing the history by asking a partner, carer or relative for their observations.

3. The first decision is to identify who needs admission to be managed by the appropriate specialist team.3 4 Pulse oximetry is a simple and discriminating test for respiratory failure (irrespective of the cause, which may be cardiac) and should be done first because patients with new or worsening respiratory failure always need admission. A high respiratory rate, high pulse rate and worrying BP, noting presence of pulmonary oedema or extensive peripheral oedema are also important and may suggest admission is necessary. We list further reasons for admission, which may depend on knowing what’s normal for that particular patient. Outcomes are improved if the patient is cared for by the respective specialist team rather than being cared for on a general ward.

4. For the patients who do not need admission, continue to use clinical examination to guide your reasoning. Use the IMPRESS algorithm if it helps. It offers links to various validated assessment tools freely available, many for self-completion by patients. The algorithm and these BITs are in sequence: assessment and diagnosis and then treatment, but in reality, if the patient’s breathlessness is acute, diagnosis and treatment will merge, eg appropriate oxygen for hypoxia and sometimes a trial of treatment is the most appropriate next diagnostic process. Other processes such as examination and taking the history are also non-linear. In addition there may be more than one contributing cause to breathlessness.

5. Because there are many clinical causes of breathlessness, don’t make assumptions. Common things do occur commonly, but there may be an alternative explanation or additional explanations. Remember patients with pulmonary or cardiac disease may not tolerate some small additional problem well and so problems such as anaemia or infection may cause worsening breathlessness. In addition, patients may have many symptoms. For example by the time a patient with COPD and disabling daily breathlessness presents to you, they may have up to 13 other symptoms.5

6. It is OK to be unsure of the diagnosis and to use more than one consultation to make the right diagnosis – it is better to be unsure than to make the wrong diagnosis and have to correct it later. The algorithm encourages the clinician to ask themselves whenever they see the patient if this is the right diagnosis.

7. If you are using electronic records consider using a high level breathlessness symptom code (eg the Read parent code 173) until a diagnosis is confirmed, and maintain the symptom code as “active” and “significant” to encourage future review of breathlessness status and revisiting of the cause. 3 National Institute for Cardiovascular Outcomes Research (NICOR). National Heart Failure Audit 6th Annual Report April 2012-March 2013. November 2012. Accessed 27 November 2013 https://www.ucl.ac.uk/nicor/audits/heartfailure/additionalfiles/pdfs/annualreports/annual12.pdf 4 Royal College of Physicians, British Thoracic Society and British Lung Foundation. Report of The National Chronic Obstructive Pulmonary Disease Audit 2008: clinical audit of COPD exacerbations admitted to acute NHS units across the UK. November 2008. Accessed 14 November 2013 http://www.rcplondon.ac.uk/sites/default/files/report-of-the-national-copd-audit-2008-clinical-audit-of-copd-exacerbations-admitted-to-acute-nhs-units-across-the-uk.pdf 5 Bausewein C, Booth S, et al. Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 13 (9): 1109-18. DOI: 10.1089/jpm.2010.0068

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8. Ask all chronically breathless patients about their current and past smoking history and calculate pack years. See here for a film about the 30-second Ask Advise and Act approach and here for a Pack years calculator if not available on your record system. Don’t assume that because someone has longstanding or severe breathlessness that they don’t smoke. The prevalence of smoking in people with chronic respiratory problems is often much higher than the average prevalence and what you might expect, and this should be checked locally. Published figures suggest it could be as high as over 40% of people with COPD,6 about two thirds of people with idiopathic pulmonary fibrosis7 and over a third of people with asthma.8

9. Ask about the impact of breathlessness using a mix of open and closed questions: “How does your breathing/breathlessness make you feel?” “Has your breathlessness been frightening to you or your family?” An additional question could be “What has your breathlessness stopped you doing that you want to do again, or would like to do for the first time?”

10. Two-thirds of breathlessness is cardiac or pulmonary.9 Start with diagnosing/excluding common causes – asthma, COPD, heart failure, obesity and anaemia; Anxiety may also be a cause or co-exist. 10 11 COPD, heart failure and anxiety are all under-diagnosed in primary care.12 13 14 Asking “What do you think causes your breathlessness?” can sometimes directly bring out anxiety-inducing concerns. Where anxiety co-exists, use of validated questions and further discussion will be necessary.

11. Heart failure can be a difficult diagnosis and NICE guidance recognises this.15 So ask yourself the question could this be heart failure? If the answer is yes, either measure a natriuretic peptide and refer to a rapid access one-stop diagnostic clinic if the level is above the value that excludes HF, or if there is a history of previous MI refer without measuring the natriuretic peptide.

12. Beware of assuming because someone has previous mental health problems that they are the cause: death rates from physical causes are much higher than average in people with mental health problems.16 17

13. Because of its complexity, a proper assessment of chronic breathlessness requires a planned and structured 20-30 minute first appointment. Therefore clinicians should 6 Restrick L , Stern M, Baxter N Tiotropium versus salmeterol in COPD.N Engl J Med. 2011;364:2552 7 Dempsey OJ, Miller M. Idiopathic pulmonary fibrosis. Idiopathic pulmonary fibrosis. BMJ 2013;347:f6579 8 To T et al. Global asthma prevalence in adults: findings from the cross-sectional world health survey. BMC Public Health 2012, 12:204 doi:10.1186/1471-2458-12-204 9 Gillespie DJ, Staats BA. Unexplained dyspnea. Mayo Clin Proc. 1994 Jul;69(7):657-63. 10 Karnani NG, Reisfield GM, Wilson GR. Evaluation of chronic dyspnea, Am Fam Physician. 2005 Apr 15;71(8):1529-37 11 Pratter, M. R., Abouzgheib, W., Akers, S., Kass, J. & Bartter, T. An algorithmic approach to chronic dyspnea. Respiratory medicine 105, 1014–21 (2011). 12 Department of Health, England. An outcomes strategy for people with chronic obstructive pulmonary disease (COPD) and asthma in England. 2011. 13 Tylee A, Walters P. Underrecognition of anxiety and mood disorders in primary care: why does the problem exist and what can be done? J Clin Psychiatry. 2007;68Suppl 2:27-30. 14 DH Cardiovascular Disease Team. Cardiovascular Disease Outcomes Strategy. March 2013. Available to download from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/217118/9387-2900853-CVD-Outcomes_web1.pdf 15 NICE. Chronic heart failure: management of chronic heart failure in adults in primary and secondary care (NICE clinical guideline 108). Quick reference guide: http://www.nice.org.uk/nicemedia/live/13099/50526/50526.pdf 16 McManus S, Meltzer H, Brugha T, Bebbington P, Jenkins. Adult psychiatric morbidity in England, 2007: results of a household survey. The NHS Information Centre for health and social care, 2009 17 Hoang U et al. Mortality after hospital discharge for people with schizophrenia or bipolar disorder: retrospective study of linked English hospital episode statistics, 1999-2006. BMJ 2011;343:bmj.d5422

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work with their local Clinical Commissioning Group to find ways to accommodate this, as is happening in a number of places across the country, such as long term condition appointments, sometimes initiated under Year of Care programmes.

14. Population health gain will require population-level interventions as well as individual ones and both require clinical input. Consider holding a local meeting of stakeholders with patients and healthcare professionals involved in breathlessness care to map what local resources exist to help people learn to breathe better. For example, swimming, yoga, pilates, tai-chi, choirs18 as well as NHS and local authority pulmonary and cardiac rehabilitation, walks and exercise classes. Personalisation, including the use of personal budgets and personal health budgets will enable people with long term conditions to devise and carry out their own care plans, in consultation with their professional advisers. There is evidence that practice teams can be taught and engaged in population diagnosis and intervention design to improve population health.19

18 Lord VM et al. Singing classes for chronic obstructive pulmonary disease: a randomized controlled trial. BMC Pulm Med. 2012 Nov 13;12:69. doi: 10.1186/1471-2466-12-69. 19 Gillam S Schamroth A. The Community-Oriented Primary Care Experience in the United Kingdom Am J Public Health. 2002 November; 92(11): 1721–17

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IMPRESS algorithm – accompanying “how to” notes The IMPRESS algorithm aims to help clinicians across the health service to help adults who have the symptom of breathlessness. The algorithm has been organised in three main parts: assessment, diagnosis and then treatment. This linear sequence cannot always be respected, because the diagnosis of breathlessness tends to need an iterative process and is affected by a number of factors that we have tried to tease out and discuss in these accompanying notes. The first steps of the algorithm focus on cases of acute breathlessness, hence they suggest how to assess it and then treat it. The remaining steps are about assessing and treating chronic breathlessness. In this report the different elements of the algorithm have been colour-coded. Questions guiding the reasoning of the clinician are in blue (also in blue containers in the algorithm), whereas steps which imply an action are in bold black (in yellow containers in the chart). Notes, supporting evidence, rationales and references have been kept in plain text. The appendices to these notes offer a quick reference for tools and information complementing the algorithm. An adult with the symptom of breathlessness comes to you for help: Are you with the patient yes/no? If no, is the patient on the phone? Yes A breathless patient may need admission and you cannot know the urgency without speaking to the patient. However, sometimes patients will phone. If the patient phones primary care, reception staff must apply a telephone triage that ensures that patients presenting with breathlessness speak to a clinician at the earliest opportunity in order to assess what response is required. This should take into account what the patient thinks they need and when they need it. We recommend that every practice has a telephone triage protocol supported by adequate training and opportunities to reflect on its use. We advise clinicians if in doubt, see the patient. Do you have access to the patient’s hospital and/or GP notes, a summary record or out of hours provider communication system? Yes Refer to them. No Consider contacting the patient’s GP to discuss or to obtain a patient summary. If yes, should the patient be admitted? Measure oxygen saturation and pulse using a digital pulse oximeter whilst manually confirming the rate and rhythm. Check blood pressure. Measure Peak Expiratory Flow (PEF) using a peak flow meter and admit if thresholds are reached. The first priority is to discriminate between acute and chronic breathlessness and if

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there has been a sudden or gradual onset. If it is acute and/or of sudden onset, diagnosis and investigations have more urgency than if chronic and/or gradual. Pulse oximetry is a simple and discriminating test for respiratory failure, which requires admission. If oxygen saturation is low for this patient (low is normally considered to be oxygen saturation on air of < 92%), treat as an emergency and follow your respiratory failure care pathway. Take account of other factors, such as your knowledge of the patient and their medical record if you have that available, that might indicate different action. Remember respiratory failure may be indicative of cardiac problems eg pulmonary oedema. Pulse oximetry Consider admission if oxygen saturation on air is less than 92%. Pulse rate and regularity Consider admission if pulse rate < 60 beats per minute (bradycardia) or > 100 per minute (tachycardia) or if the rhythm is rapid and irregular. Respiratory rate Consider admission if respiratory rate is above 30 breaths per minute. Respiratory rate is an underused reliable measure of how sick a patient is. In the hospital setting it is a strong risk predictor of ICU admission. It is easy to do and low tech. This is included in core teaching for Foundation Year and core trainees in hospital. Note that it will also be raised with other conditions such as pneumonia, other respiratory infection, pulmonary oedema and pulmonary embolism. The cut-offs are: • Respiratory rate above 24 breaths per minute predicts ICU risk • >20 breaths per minute: flag in early warning systems and • 30 breaths per minute: used by CURB-65 which is used to predict mortality in

severe pneumonia.

Peak Expiratory Flow (PEF)20 Consider admission for acute asthma attack, following guidance in BTS/SIGN or BNF or NICE: • Admit all people with a life-threatening asthma exacerbation (peak expiratory flow

PEF) usually < 33% best or predicted and/or oxygen saturation < 92%). • Admit people with a severe asthma exacerbation (PEF usually 33–50% best or

predicted) who do not rapidly respond to initial treatment or who have a factor that warrants a lower threshold for admission.

• Admit people with a moderate asthma exacerbation (PEF usually > 50% best or predicted) who have a factor that warrants a lower threshold for admission. See NICE for the list of factors should lower the threshold for admission.

 Peak flow is commonly used, but there are other ways of measuring airways obstruction. Measure peak flow and % predicted (for age, sex and height – GP systems can use autocalculation). Note that we do not recommend using personal best unless you are sure that the patient’s personal best is without symptoms. Consider admission to hospital also for these indicators: • Relative hypotension for that patient or values < 90/60 (knowing the normal BP for a

patient is very important here) 20 Nunn AJ, Gregg I. New regression equations for predicting peak expiratory flow in adults. Br Med J. 1989;298(6680):1068–1070. Downloadable at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1836460/?page=1

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• New confusion, increased confusion or increased drowsiness, either observed or reported by carers

• Central chest pain • Suspected unstable arrhythmia • Stridor and breathing effort without air movement (suspect upper airway

obstruction) • Unilateral tracheal deviation, unilateral breath sounds (suspect tension

pneumothorax) • Heart failure (confirmed or not) and extensive oedema or tachycardia or cardiac

shock

Note for emergency department: Patients who present to the Emergency Department with possible heart failure and pulmonary oedema if they are fit enough to be discharged need clear advice and contact with relevant primary care clinicians to ensure they are investigated further to confirm the diagnosis.

If they do not need admission, do you suspect they still require acute therapy in the community? Depending on the readings from pulse oximetry, peak expiratory flow, pulse and respiratory rate follow the relevant guidance:

• Consider pulmonary embolism as a cause of otherwise unexplained recent onset breathlessness and refer for urgent (same day) assessment in hospital, including CT pulmonary angiogram (CTPA).

• COPD exacerbation: follow guidance by NICE and BNF

• Heart failure: follow NICE guidance. If the patient has a firm diagnosis based on an echocardiography and specialist opinion, modify treatment involving community or hospital heart failure teams where helpful. If they do not have a firm diagnosis, refer to a one-stop diagnostic clinic. If the patient has a history of MI they need immediate referral.

Use your consultation skills to work with the patient to run through their anxiety management and breathlessness control techniques. If not already done, consider referral to a physiotherapist or psychologist if the problem is severe. If they do not need acute therapy in the community Does the patient already have a diagnosis No Taking a good history is the next and most important thing you can do This sequence will be governed to some extent by how much you know the patient and/or their family, tailor it to the individual. Take a detailed history to start ruling out/in common physical causes: COPD, asthma, heart failure, anaemia, obesity, anxiety and to narrow down your hypothesis. Ask the patient what they want out of the consultation, listen to their story including any history of cardiac, pulmonary disease or trauma. Listen to their breathing, examine them, and take evidence-based measurements.

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Ask about their current and past smoking history and calculate pack years. If they smoke (tobacco, cannabis and/or shisha), ask if they have thought about stopping. If they have, ask if they would like some advice to support this. Ask about their alcohol use and concerns using a formal assessment tool, and record this.21 Excess alcohol consumption can be a cause or contributing factor for breathlessness eg cardiomyopathy, aspiration pneumonia, and also make coping with breathlessness more difficult. Assess how anxious the person is using a validated tool (see below) and consider how much this is affecting their breathing. Make sure you have established the patient’s (and carer’s) ideas, concerns and expectations about the consultation and their condition. Explain what will happen at the next consultation including how they will hear about any test results. Further pointers:  

Language When taking the patient’s history, use mainly open questions initially and listen. Language, words and sound matter when discussing breathlessness: listen to the sounds of breathlessness, the way the patient describes it, what they want and what it is they expect you to be able to do. Breathlessness is subjective. Patients may not be able to describe what it feels like, but might instead describe the accompanying emotion or the limits on their activity. For example “It’s absolute murder walking up the hill.” They might describe needing to “stop for a breather”. Remember omissions – what is not said – can be equally important and observe the length of sentences that are spoken and the ease of this.22 Closed questioning has its place too: “Do you understand what I mean?” and when the person is confused, closed questions can establish communication. Ask about the impact of their breathlessness Ask about the impact of breathlessness using a mix of open and closed questions: “How does your breathing/breathlessness make you feel?” Most people are frightened by their breathlessness to some extent, but are worried about admitting it, and therefore a more closed question can be effective: “Has your breathlessness been frightening to you or your family?” An additional question can help set some goals: “What has your breathlessness stopped you doing that you want to do again, or would like to do for the first time?” Ask about physical activity Throughout this work we deliberately use the term “physical activity” rather than exercise in line with NICE guidance.23 We encourage clinicians to be aware of the language they use and substitute “activity” for exercise because patients may misreport their activity levels if asked about exercise. They may not include walking, gardening, putting out the washing and so on. In addition, many patients may be put off by the term “exercise” if suggested as treatment. The use of the GP physical activity questionnaire (GPPAQ24) is recommended by NICE and has been used to achieve the QOF hypertension requirement (2013/14). It is also a gentle way to introduce the topic of physical activity rather than exercise. It is not familiar yet to all clinicians, and so is provided as an appendix to these BITs. GP electronic notes systems will calculate and code

21 NICE Clinical Guideline CG115. Alcohol-use disorders: diagnosis, assessment and management of harmful drinking and alcohol dependence. February 2011. Available at www.nice.org.uk/cg115 22 Neighbour R. The Inner Consultation. Lancaster: Kluwer Academic Publishers; 1987 23 Physical activity: brief advice for adults in primary care NICE guidance.nice.org.uk/ph44 24 https://www.gov.uk/government/publications/general-practice-physical-activity-questionnaire-gppaq

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your result and brief intervention. Another way to bring the topic into the conversation could be: “Physical activity can be more difficult for people with breathlessness but in the longer term can help to improve breathing symptoms. Can I ask what sorts of physical activity you are currently able to do?” People may respond that they continue to do the same activities, but a change in activity over time may be especially helpful in your assessment. You could ask if they have to stop for breathers or if takes them longer than it used to. For example, if the patient can now walk 50 metres, then ask how far they could walk 6 months ago or a year ago for comparison. If they do less, asking “What stops you?” can be helpful, because breathlessness may be missed if joint pain limits their activity. Alternatively, you may have a preferred question based on local geography or ask “Do you get breathless walking……[up a flight of stairs, to x shop….] Except for the most severe heart failure and some people with anxiety, patients will be asymptomatic at rest but develop symptoms with exercise of varying degrees, and their breathlessness will resolve with rest. If they are not hypoxic at rest (and the latter indicates pulmonary oedema or concomitant pathologies) they will not develop hypoxia on exercise. They get breathless on exertion, relieved by rest, but have a portfolio of CVD risk factors. Patients with symptoms at rest and hypoxia should be admitted and referred early as an inpatient to the specialist heart failure team. Occasionally breathlessness is an anginal variant, but this diagnosis should be made by the cardiologist who is seeing the patient within the rapid access diagnostic clinic. Some patients may have anginal symptoms and shortness of breath, and if anginal symptoms dominate, referral to a chest pain clinic may be more appropriate.    Obesity and asthma We do not yet know enough about the relationship between obesity and asthma. Metabolic syndrome and a large waist circumference are associated with an increased risk of incident asthma in adults.25 However, increasing the dose and/or potency of inhaled corticosteroids in patients with asthma who are obese may not get the outcome the patient wants and may cause harm.26 There is also the possibility that the breathlessness caused by a general level of unfitness in obese patients may be misdiagnosed as asthma.    

Continue to use clinical examination to guide your reasoning: look and listen to the patient and measure vital signs if not already performed Continue to assess the general condition and appearance of the patient. Do they appear anxious, tense, are they pale or clammy? Are they chatting normally? Look carefully at their hands (nicotine stains, anaemia, clubbing for example can be found). Consider these if not already done as part of the decision whether to admit:

• Measure pulse rate and rhythm/regularity (over 15 seconds) (if irregular it would be sensible to listen to the heart rate at the apex)

• Assess respiratory rate (over 30 seconds)

25 Brumpton BM et al. Metabolic syndrome and incidence of asthma in adults: the HUNT study.Eur Respir J. 2013 Jul 11. [Epub ahead of print]. 26 Stream AR. Obesity and asthma disease phenotypes Curr Opin Allergy Clin Immunol. 2012 Feb;12(1):76-81. doi: 10.1097/ACI.0b013e32834eca41

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• Observe breathing pattern including use of accessory muscles • Assess airway patency and listen to the patient’s lungs • Check if they have raised jugular venous pressure (JVP)  • See if they have ankle oedema (or more extensive oedema extending up their legs

or, if in bed, potentially sacral oedema)  • Measure their blood pressure: it is useful in chronic disease as may be affected by

medication(s)  • Listen carefully for murmurs eg aortic stenosis, especially in an older patient  • Take their temperature (only if you think necessary)  • Measure BMI: divide weight in kilograms by the square of their height in meters  • Measure Peak Expiratory Flow (PEF) and % predicted (for age, sex and height)  • If tachypnoea is present but other measures are within normal limits observe their

breathing pattern and consider reflecting this back to them to see if they are aware of what you have recorded and if they have any thoughts about what might be driving it  

Essential equipment:  • Oximeter  • Watch/clock/computer/smartphone  • Stethoscope  • Blood pressure measure  • Calibrated weighing scales  • Height measure  • Thermometer  • Peak Expiratory Flow Meter/Microspirometer  • Expired carbon monoxide monitor

  This free website provides different audio characteristics of heart murmurs and breath sounds for educational purposes: http://www.med.ucla.edu/wilkes/inex.htm Code the symptom to enable development of breathlessness register To understand the scale of the problem and the impact of intervention, we need to develop accurate registers highlighting the number of people with breathlessness as a symptom, especially when undiagnosed. In general practice this can be entered as a Read code (symptom) until you are sure of your diagnosis. We suggest parent code 173. An alternative is to use a “suspected” code, or just a breathlessness score. After the principal diagnosis is made ensure that at subsequent visits additional causes of breathlessness are also considered. Remember that you may record more than one diagnosis. When working in other environments it is very important to code similarly. A discharge letter with a diagnosis of heart failure or COPD (when it is only suspected) may well be coded as such when it comes from the hospital in the GP notes and cause long-standing confusion or indeed be transcribed into other clinical correspondence within the hospital environment. This is important because there may be more than one cause of breathlessness and there is evidence of significant misdiagnosis in COPD and asthma registers. Some of this misdiagnosis might have been made a long time before (eg wheezy child), or by miscoding of a hospital discharge note in general practice (particularly if the confirmed diagnosis follows late after the discharge). In the case of COPD only 14-18% of people with COPD have no other co-morbidity, and when actively assessed for co-morbidities it may be as low as 3%.27 It is therefore possible that another cause of breathlessness 27  Vanfleteren LE et al. Clusters of comorbidities based on validated objective measurements and systemic inflammation in patients with chronic obstructive pulmonary disease. Am J Respir Crit Care Med. 2013;187(7):728-35  

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may co-exist.28 29  Does the patient already have a diagnosis? Yes Review history and vital signs Check smoking status and consider measuring carbon monoxide level Check also what medicines they are taking (over the counter and for other conditions – are they filling their prescription?) Can the original diagnosis be confirmed? Yes Is the treatment right and is it being taken in the right way? What does the patient believe is the cause of their breathlessness? What medicines does the patient take for their condition, and how do they take them? Do they have any concerns – such as inhaled steroid use – which may influence their adherence? Explain to the patient what the medicines that are prescribed are for and why the treatments are needed to be taken on the days prescribed not just when the patient has symptoms to increase understanding of the necessity of treatment. If the person uses an inhaler, explain why correct technique is important. If you are satisfied that the original diagnosis can be confirmed and that you have explained the diagnosis and treatment, continue with the algorithm. No Was the patient misdiagnosed? Could there be an additional diagnosis? Remember both left and right heart failure are common in patients with chronic pulmonary disease and the presence of one increases the likelihood of a second, and the morbidity and mortality associated with either. Yes Use the algorithm to guide further assessment No Continue with the algorithm Is there a single high probability cause evident? Remember a timely correct diagnosis could avoid over- or mis-diagnosis of some conditions (eg asthma) and the consequent prescription of inappropriate or unnecessary medicines. So, for example, if you are thinking “It’s asthma” firstly consider the probability of asthma in your patient before prescribing an inhaler. Remember asthma is usually diagnosed by high probability clinical features, evidence of reversibility and a good response to treatment.30 By necessity this often takes a period of time before confirmation, e.g. 6 weeks to confirm reversibility if using an inhaled corticosteroid assuming technique and compliance are optimum, longer if you need to try a different device, re-teach technique or if health beliefs or concerns about using medicines affect adherence to any agreed pathway to diagnosis confirmation. Yes Explain the diagnosis, offer appropriate visual/written advice, and start treatment 28 Guthrie et al. Adapting clinical guidelines to take account of multimorbidity BMJ 2012;345:e6341 29 Barnett K et al. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study Lancet 380(9836), 37-43 DOI:10.1016/S0140-6736(12)60240-2 30 British Thoracic Society and Scottish Intercollegiate Guidelines Network. British Guideline on the Management of Asthma: A national clinical guideline. available from http://www.brit-thoracic.org.uk/clinical-information/asthma/asthma-guidelines.aspx, 2011.

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(see Treatment section). No Consider how anxious or depressed the person is and aim to find out whether the physical problem is causing the anxiety, or if other life circumstances are the cause, or a combination of both. Short questionnaires validated for use in general practice include PHQ431 (PHQ) – see Appendix. HADS is the normal assessment tool in secondary care. Note this is deliberately at this point in the algorithm to bring attention to mental health assessment in long term conditions. The PHQ4 contains GAD2 (anxiety) and PHQ2 (depression) and if score of 3 is met, this should trigger use of more detailed assessments: use GAD7 (anxiety)32 and/or PHQ9 (depression) or HADs. It might be worth considering questions like: “Is there anything, apart from your breathlessness, that is currently making you stressed?” The fear from clinicians is that this will open up a ‘can of worms’ which they can’t put the lid back on. But it need not be a protracted conversation if it actually leads to appropriate help being accessed eg through referral to Improving Access to Psychological Therapies (IAPT) or Citizens’ Advice Bureaux (CAB) services.33 Consider using statements such as “We have not found any physical illness to explain your breathlessness so we should look for other reasons. Breathlessness can be due to something that happened to you in the past that altered the way you breathe then and has become a habit, like a bad asthma attack or a chest infection. It can also be a reflection of your inner stress or emotional state, even if you don't feel stressed and leads to a different way of breathing that becomes a habit. It is worth trying various treatment options like physiotherapy breathing re-training and/or also seeing the IAPT service who offer talking therapy, or your Citizens' Advice Bureau to help you sort out anything that might be causing you stress.”  If there is not a single high probability cause evident, decide if further tests should be carried out to confirm a diagnosis or to provide further information. Only order the test if you would act upon the results.34 35 Consider the impact of arranging a test on the patient – it will affect their conceptualization of their diagnosis (see below).  Clinician fear can also drive behaviours in breathlessness care in primary care and in emergency departments. For example, fear of missing something can drive excessive testing such as CT pulmonary angiography in emergency departments for pulmonary embolism even when an alternative valid diagnosis of the cause of breathlessness has been made.36 Appropriate management of anxiety in clinicians and patients may help 31 Löwe B et al A 4-item measure of depression and anxiety: validation and standardization of the Patient Health Questionnaire-4 (PHQ-4) in the general population. J Affect Disord. 2010 Apr;122(1-2):86-95. doi: 10.1016/j.jad.2009.06.019. Epub 2009 Jul 17. 32 Spitzer, R. L. A Brief Measure for Assessing Generalized Anxiety Disorder. The GAD-7. Archives of Internal Medicine 166, 1092 (2006).

33 For an example see http://www.emotionalwellbeing.southcentral.nhs.uk/staying-well/coping-with-lifes-issues 34 National Clinical for Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care. London: National Clinical Guideline Centre (updated 2010). NICE Clinical Guideline 101. http://www.nice.org.uk/cg101 35 National clinical guideline for diagnosis and management in primary and secondary care. NICE clinical guideline 108 http://www.nice.org.uk/nicemedia/live/13099/50514/50514.pdfN 36 Wiener RS, Schwartz LM, Woloshin S. When a test is too good: how CT pulmonary angiograms find pulmonary emboli that do not need to be found. BMJ. 2013 2013-07-02 23:31:46;347.

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this, which is a process of decision-making that is part of clinical training. We recommend that you become familiar with near patient tests and increase your confidence through regular use, assuming practices are calibrating them annually to meet Care Quality Commission (CQC) standards. If you refer, you will have less sense of how these tests work, which will make it harder to explain to your patients and you will find it harder to interpret the results. For example, if using microspirometry where you suspect a respiratory cause, we recommend that you know your own values and test yourself first in front of the patient. This has four advantages: - it checks the accuracy of the device - it gives you a benchmark for comparison - it demonstrates the techniques to the patient - it increases your understanding of the test in a way referral eg for spirometry, does not. List of further tests in chronic breathlessness that should be carried out to confirm a diagnosis or to provide further information

Routine blood tests These should include electrolytes, urea and creatinine, estimated glomerular filtration rate (eGFR), thyroid function tests, liver function tests, fasting lipids if cholesterol not previously checked, fasting glucose, HbA1c, full blood count to check for anaemia, serum bicarbonate to pick up chronic respiratory failure and don’t forget (not a blood test) but urinalysis looking for proteinuria or haematuria Natriuretic peptides [see NICE CG108 section 1.1.1 If you suspect new heart failure and there is a history of MI refer immediately to a rapid access diagnostic HF clinic (one stop cardiologist and echocardiography). If there is no history of MI but heart failure is possible then follow the NICE guidance: measure serum natriuretic peptides (B-type natriuretic peptide [BNP] or N-terminal pro-B-type natriuretic peptide [NTproBNP]): • If BNP <100 pg/ml or NTproBNP <400 pg/ml, heart failure is unlikely in an untreated

patient: consider another cause for breathlessness. • If the natriuretic peptide is above these levels then refer immediately to the rapid

access HF clinic (transthoracic Doppler 2D echocardiography and specialist cardiology assessment ) quoting the natriuretic peptide level:

o People with suspected heart failure and a very raised BNP level above 400 pg/ml (116 pmol/litre) or an NTproBNP level above 2000 pg/ml (236 pmol/litre) should be seen within 2 weeks because they are at high risk of hospitalisation and have higher mortality rates. Remember the higher the level the greater the risk. If you are concerned speak to the local heart failure lead and ensure this happens as soon as possible.

o People with suspected heart failure and a raised BNP 100-400 pg/ml or NTproBNP 400-2000 pg/ml should be seen within 6 weeks, unless there is additional clinical concern, when they should be seen earlier: please then discuss with the heart failure lead

For more information about all the recommendations for the diagnosis of chronic heart failure see pages 4 and 5 of the quick reference guide and slide 17 http://www.nice.org.uk/nicemedia/live/13099/50526/50526.pdf Interpretation of BNP There are several things that will put up a BNP or NT proBNP including left ventricular hypertrophy, ischaemia, tachycardia, right ventricular overload, hypoxaemia [including pulmonary embolism], renal dysfunction [GFR < 60 ml/minute], sepsis, COPD,

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diabetes, and cirrhosis of the liver). All of these are important to identify. Age over 70 years can also increase the level. Also, it can be lowered by obesity or treatment with diuretics, angiotensin-converting enzyme (ACE) inhibitors, beta-blockers, angiotensin II receptor antagonists (ARBs) and aldosterone antagonists. As the BNP or NTproBNP gets very high it does become more specific and therefore becomes prognostic as well: this is why NICE suggests urgent referral of patients with very raised BNP. Age-related thresholds for BNP There is some evidence-based age related action limits for NT proBNP37 but similar data does not exist for BNP and levels can be affected by the medicines that many elderly patients will be taking. Some CCGs in the North East are discussing how they might incorporate the data in local pathways. Access to BNP Note that access to serum natriuretic peptide has increased dramatically in primary care as a rule out diagnostic test since the publication of the NICE guidance but is not yet universally available. Use of natriuretic peptide testing in this way has been shown in pilot studies and modelling commissioned by NICE to reduce inappropriate cardiac and echocardiography referrals.38 Guidance for hospital-based usage is under consideration by the NICE Acute Heart Failure Clinical Guideline Group, but the European Society of Cardiology guidance does include hospital use. Microspirometry A portable device and technique that measures FEV1 and allows patient biometric values to be entered to identify percent predicted FEV1. Not suitable for diagnosis but useful at initial assessment and monitoring after diagnosis confirmed) Perform the test with the patient sitting Measure FEV1

Take a low measured % predicted FEV1 seriously in all patients (there are figures available on European populations that highlight people who have an FEV1 below the lower limit of normal 39); in patients with respiratory disease it is a direct measure of severity and in patients with cardiac disease, a predictor of mortality.40

Peak Expiratory Flow (PEF) Where possible, the patient should be standing, but if they are unwell it is much better to do the test sitting than not to do it. Use % predicted unless you are sure that the patient’s “best” is without symptoms. If the patient has serial PEF measurements, for example during a hospital admission or has been asked to keep a diary, plot these graphically to help confirm the diagnosis: • Increasing PEF with gradually reducing variation (serial PEFs during admission) or

diurnal variation (home diary) support a diagnosis of asthma • A flat serial PEF recording suggests irreversible obstruction ie COPD or another

explanation for the low PEF eg obesity. Patients admitted to hospital with COPD usually have flat serial PEFs <150 l/minute. A higher flat serial PEF should prompt a search for an alternative explanation for breathlessness.

37 Hildebrandt P, Collinson PO, Doughty RN, Fuat A et al Eur Heart J 2010; 31: 1881-9 38 Chronic heart failure, Shared learning: use of the scenarios simulation in the introduction of serum natriuretic peptide testing Implementing NICE guidance: NICE clinical guideline 108 http://www.nice.org.uk/nicemedia/live/13099/55149/55149.pdf 39 Quanjer PH, Stanojevic S, Cole TJ, Baur X, Hall GL, Culver BH, et al. Multi-ethnic reference values for spirometry for the 3–95-yr age range: the global lung function 2012 equations. European Respiratory Journal. 2012;40(6):1324-43. 40 Mannino DM, Watt G, Hole D, Gillis C, Hart C, McConnachie A, Davey Smith G, Upton M, Hawthorne V, Sin DD, Man SF, Van Eeden S, Maple DW, Vestbo J: The natural history of chronic obstructive pulmonary disease. Eur Respir J 2006, 27: 627 – 643

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Use home PEF diaries selectively: BTS / SIGN guidelines suggest that as a diagnostic tool apart from occupational asthma they are very insensitive. They can be most useful as an educational tool with some patients, as well as a sense-checking tool. The techniques used for performing PEF and FEV1/FVC are different. If time allows perform a PEF on a PEF meter and FEV1 using a spirometer. It is possible to achieve a normal PEF but have a reduced FEV1. However, consider the right sequence for each patient. It may be better to do microspirometry first, if you feel that the patient may only have enough breath for one test. Serial peak expiratory flow (PEF) readings or spirometry (spirometry standards in primary care41) will identify variable airway obstruction and spirometry may show evidence of obstructive or restrictive lung disease (spirometry reflects the net result ie whichever is dominant). Remember peak flow can be modified by acute heart failure, as can FEV1/FVC ratios.42 See Appendix. Carbon monoxide Breath test used to confirm that people (who are likely to be smokers) have a high level of CO in the blood compared with normal. ECG May reveal abnormal heart rate or rhythm. There may be evidence of ischaemic changes, ventricular hypertrophy or pericardial disease. Heart failure is less likely in the presence of a normal ECG but can occur. Patients may have an abnormal ECG indicating a previous MI without any history and this is a more common finding in the older patient and in people with diabetes. Chest X-ray (CXR) This may reveal chest wall abnormalities, evidence of pleural disease, neoplastic lesions, consolidation, interstitial lung disease, cardiomegaly or cardiac failure or pneumothorax which can be of acute onset. The availability of chest X-ray depends on the setting. In hospitals these are invariably requested and performed. For patients attending an emergency department and presenting with breathlessness, a CXR should be performed and reported as part of the emergency assessment and at most within four hours.43 44 45 In primary care, most GPs have direct access to chest X-rays, but there remains considerable variation in speed of access and numbers of X-rays per practice, and in reporting arrangements. Whoever requests the X-ray should expect to see the image or receive a quality report within a short period of time. Where this can’t be achieved through one shared electronic system, an alternative, that meets local clinical governance standards should be found. For example, there are examples of

41 Levy ML, Quanjer PH, Booker R, Cooper BG, Holmes S, Small I. Diagnostic Spirometry in Primary Care: Proposed standards for general practice compliant with American Thoracic Society and European Respiratory Society recommendations. Prim Care Respir J 2009;18(3):130-147. DOI: http://dx.doi.org/10.4104/pcrj.2009.00054 42 Ezekowitz JA et al. Assessment of Dyspnea in Acute Decompensated Heart Failure. J Am Coll Cardiol. 2012;59(16):1441-1448. doi:10.1016/j.jacc.2011.11.061 43 Guidelines for the management of community acquired pneumonia in adults: update 2009: British Thoracic Society community acquired pneumonia in adults guideline group. Thorax October 2009: volume 64: supplement 3 44 Sutton et al. Reduced mortality with hospital pay for performance in England. N Engl J Med 2012;367: 1821-1828 DOI: 10.1056/NEJMsa1114951 45 http://www.slideshare.net/NHSImprovement/breakout-11-mark-woodhead-spreading-best-practicethe-ingredients-for-success

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hospital clinicians loading the X-ray onto an iPad to take to show the referrer, eg the GP, at a suitable time, which provides an opportunity for learning. In effect, many clinicians will only order a small number of tests and will therefore not be competent to interpret; the important message is to think about referral for CXR and receive a reliable and rapid result from someone competent in interpretation. If a previous CXR has been performed it is high value to compare the current CXR with previous CXRs even if this means requesting the CXR from a different provider. Repeating a CXR if breathlessness worsens or does not stabilise with usual interventions is always appropriate when re-investigating the cause. Be guided by the change in clinical picture not by the time elapsed since the last CXR was performed. CXRs performed on acutely unwell patients may be sub-optimal (done as A-P projections accommodating patient’s functional status) and should be repeated if a patient has continuing or chronic breathlessness once their acute status has stabilized. A normal CXR does not exclude pulmonary fibrosis and if idiopathic pulmonary fibrosis is a possible diagnosis it would be an indication for a high resolution CT scan. Waist circumference Waist circumference is an excellent measure of central adiposity, which is closely related to cardiometabolic risk. It is usually a useful measure for those with body mass index (BMI; [weight (kg)]/[Height (m)]2) of <35Kg/m2 as it is difficult to ascertain waist circumference accurately in those with higher BMI values. A high waist circumference should be a clue for cardiometabolic disorders such as insulin resistance, diabetes, hypertension, and dyslipidaemia triggering additional investigation. In some studies, waist circumference has been shown to be a better predictor of heart failure than BMI. The strength of the association between BMI and heart failure events declines with a person’s age, but increased waist size is a predictor of heart failure even when measurements of BMI may fall within the normal range.46 Therefore include measurement of waist circumference, if this if manageable. There are difference techniques to measure waist at different levels. Using measurement at the umbilicus is the least accurate and is most likely to be affected by previous abdominal surgery. The World Health Organization (WHO) has made the following recommendation for measurement of waist circumference. Use a constant tension tape. Remove/move any item of clothing that may exert pressure on the abdomen. Measure on bare skin, and if not possible, thin clothing only. Ask the person to put their arm on the side of their body with their feet together. Locate the upper border of the iliac crest and the lowest edge of the ribs and mark the midpoint between these two landmarks at the mid-axillary line. Measure waist circumference at the level of the mark with the person breathing normally, and relaxed and not tensing his/her abdominal muscles. Note the circumference at the end of expiration after several natural breaths. Please note that there are different cut-points for waist circumference as a measure of cardiometabolic risk based on patients’ ethnicity.47

Neck circumference

46 Levitan E et al. Adiposity and Incidence of Heart Failure Hospitalization and Mortality: A Population-based Prospective Study. Circ Heart Fail. 2009. doi:10.1161/CIRCHEARTFAILURE.108.794099 47 World Health Organization. Waist Circumference and Waist-Hip Ratio. Report of a WHO Expert Consultation. December 2008. Accessed 8 January 2014 from http://whqlibdoc.who.int/publications/2011/9789241501491_eng.pdf

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Neck circumference has been proposed as a less intrusive measure of metabolic risk. Neck circumference is also useful in identifying individuals at high risk of obstructive sleep apnoea (OSA), an important risk factor for cardiovascular disease. Whilst the utility of neck circumference in long-term outcomes remains to be determined, nevertheless, it is a useful assessment tool. Measure neck circumference as follows: ask the patient to stand straight and look straight ahead. Place a tape measure around the neck at right angles to the spine just below their “Adam’s apple” at the level of the cricoid cartilage. There are different cut-points used to assess risk depending on patient ethnicity. For example, in Caucasian people, as neck circumference increases (≥ 40 cm in men and ≥ 34 cm in women), there is increased cardiometabolic risk.48

Additional equipment required or local access to: • Chest X-ray • Spirometer • Tape measure • ECG machine • Carbon monoxide monitor • BNP testing with hospital analysis

Note NICE does not recommend echocardiography in primary care.35

Is the diagnosis evident? Yes Give and explain the diagnosis Fear of breathlessness drives significant healthcare utilisation such as attendance at the emergency department, some of which is unwarranted.49 Like all long term conditions, the goal is to support patients through care planning, so that they feel more confident to self-manage and use healthcare services at the right times. The way in which the diagnosis or diagnoses becomes conceptualised by the patient will affect how they work with healthcare professionals and others to control their disease(s) or symptoms in the future. The more empowered a patient is to self-manage, the better the outcomes. When giving the diagnosis address these five components, based on the patient’s understanding, ideas and expectations.50 51 90 52

• What is it? • How long will it, and the treatment last? What treatment options are there? • What caused it? • What will happen now and in the future?

48 Preis SR, Massaro JM, Hoffmann U, D'Agostino RB Sr, Levy D, Robins SJ, Meigs JB, Vasan RS, O'Donnell CJ, Fox CS. Neck circumference as a novel measure of cardiometabolic risk: the Framingham Heart study. J Clin Endocrinol Metab. 2010 Aug;95(8):3701-10. doi: 10.1210/jc.2009-1779. Epub 2010 May 19 49 Howard C et al. The effectiveness of a group cognitive-behavioural breathlessness intervention on health status, mood and hospital admissions in elderly patients with chronic obstructive pulmonary disease. Psychol Health Med. 2010 Aug;15(4):371-85. 2010 DOI:10.1080/13548506.2010.482142 50 Tate P. Ideas, concerns and expectations. Medicine. 2005 2/1/;33(2):26-7. 51 Howie JG, Porter AM, Forbes JF. Quality and the use of time in general practice: widening the discussion. BMJ. 1989 Apr 15;298(6679):1008-10. PubMed 52 Leventhal, I.I., Meyer, D., & Nerenz, D.R. (1980). The common sense representations of illness danger. In S. Rachman (Ed.), Contributions to medical psychology. NewYork: Pergamon.

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• Can it be cured or controlled?

Provide information appropriate to the person’s reading age and learning style. Consider if the patient would prefer to read, listen or watch a film about their condition; all three types of information are now readily available. Some examples: General sources of information used by many GPs: patient.co.uk and NHS Choices Specific sources: Anxiety and breathlessness leaflet from Kings Health Partners COPD leaflets from the British Lung Foundation or pictorial advice from Imperial College Heart failure leaflets from the British Heart Foundation Asthma leaflets from Asthma UK or pictorial advice from Imperial College The Association of Chartered Physiotherapists in Respiratory Care have several leaflets on positions, breathing exercises, energy conservation, Buteyko breathing technique and active cycle of breathing techniques. A group of physiotherapists with an interest in hyperventilation has produced a useful guide to breathing control We have also produced IMPRESS Breathlessness Tips for patients available from www.impressresp.com Yes Consider categorising severity of the patient’s breathlessness using a validated scale

• If a respiratory diagnosis is suspected, the Medical Research Council Breathlessness Scale is often used, although not usually for asthma. It is a category scale that really measures activity limitation. It is also used with patients with obesity and breathlessness.

• If heart failure is suspected, and referral for an echocardiogram is being considered, use the New York Heart Association (NYHA) functional classification system

• If you haven’t done it yet, also consider a mental health assessment See Appendix Note that studies have found that walking distance does not correlate with formally measured exercise capacity, even after correction for patient perception of distance, and has not been found to have prognostic relevance. Therefore researchers have questioned its value.53 Is the diagnosis evident, and has it been explained to patient? Yes Depending on the patient’s history, physical and mental health assessment and chronicity decide on one of these options: • Start treatment or refer to a treatment service eg breathing training

53 Raphael C. Limitations of the New York Heart Association functional classification system and self‐reported walking distances in chronic heart failure Heart. 2007 April; 93(4): 476–482. Published online 2006 September 27. doi: 10.1136/hrt.2006.089656

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• Treat as part of the diagnosis. For example, start a course of medicines eg oral corticosteroids +/- antibiotics if you think it is an exacerbation of COPD (AECOPD), then arrange a review at a specified time after the course of medicine and when test results are received

• Carry out further tests before starting treatment

No, the diagnosis is not evident and you wish to see the patient again after test results are received Organise a follow-up appointment: consider booking the appointment for the patient directly. If they do not attend, consider if the patient is high risk, and if they are, contact the patient to follow up. It is worthwhile having systems developed in your organisation to manage this. At this appointment, reflect together on any patient-generated data such as a PEF diary (only useful if the patient has also been prescribed medication, otherwise use a symptom diary), as well as test results. If you have not undertaken a mental health assessment, consider using PHQ4. No the diagnosis is not evident and/or you wish to seek specialist advice Refer if • The clinical findings require referral with or without further tests organised eg severe

anaemia with abdominal mass • You cannot establish the underlying cause for the patient’s breathlessness or • The symptoms are disproportionate to the severity of their disease or • The person would benefit from breathing training that is offered by respiratory

physiotherapists, or • This is the NICE guidance eg heart failure one-stop diagnostic clinics or • There is an unexpected response to therapy, including no response to treatment

despite maximum therapy or • The patient would benefit from multi-disciplinary services not available in primary

care (and, ideally, including psychology) or • Further tests are indicated to stage and treat a diagnosed cause (eg lung cancer) or • Where it is mandated by specialist commissioning specifications in England eg

bariatric surgery.54

The degree of urgency should be guided by NICE or if no guidance available, your assessment of risk of premature mortality. Increased risks of premature mortality include dependent smokers, those with mental illness and those with learning disabilities and those post-exacerbation. For example, the NICE heart failure standard for a patient with heart failure to be seen within two-weeks should be taken as seriously as the two-week standard for breast cancer. Examples of referral routes and reasons

• eg Quit smoking support for highly dependent smokers which now exists at a number of centres

• eg Breathlessness clinic for cardiopulmonary exercise-testing, and where both respiratory and cardiology expertise is needed

• eg Respiratory physiotherapists who might use the Nijmegen Questionnaire (see Appendix) to assess hyperventilation syndrome and offer breathing

54 NHS Commissioning Board Clinical Reference Group for Severe and Complex Obesity. April 2013. Severe and Complex Obesity Surgery policy

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training where appropriate55

• eg Cardiology: for patients with heart failure requiring any of echocardiogram, cardiac catheterization, Holter monitor for continuous assessment, cardiopulmonary exercise-testing. Also refer to be seen within 2 weeks any breathless patient who you suspect has heart failure who has a high natriuretic peptide or had a previous MI to a specialist heart failure clinic for simultaneous echocardiography assessment and clinical assessment by a specialist in heart failure. Other heart failure patients with elevated peptides should be referred to be seen within 6 weeks.

• eg Respiratory/COPD: Lung function testing, arterial blood gas, bronchoscopy, oesophageal pH, ventilation-perfusion scan, radionuclide study, high-resolution computed tomography, cardiopulmonary exercise-testing, lung biopsy

• eg Difficult to manage asthma clinic [note this is sometimes a tertiary referral and may be subject in England to specialist commissioning rules] see IPCRG resources and PCRJ ideal referral letter

• eg Weight management clinic including assessment for bariatric surgery: for people with a BMI of >35 with a comorbidity.

Treatment options Follow NICE guidelines and ensure that each of your patients is offered the highest value interventions for their condition and, if appropriate, offered it at every consultation until it is accepted.1 Value is defined as patient outcomes, divided by the cost of producing those outcomes.56 IMPRESS has looked at the value of COPD interventions for a population and concluded that investment is justified for supporting stop smoking, increasing physical activity and programmed rehabilitation. Meanwhile, there is scope to reduce waste in prescribing. The DH Companion Guide includes a value pyramid that shows the relative cost per quality adjusted life year (QALY) of different interventions for people with COPD57. See Appendix. The interventions that need to be considered for people with breathlessness include influenza vaccination, stop smoking support, weight management, physical activity, cardiac and pulmonary rehabilitation programmes, anxiety management, prescribed medicines, checking inhaler technique and oxygen. Patients should also be given information about the effects of hot and cold weather and air quality on breathing, the use of weather forecasts and the importance of keeping the temperature warm enough in their homes, and if appropriate, be referred to the local authority Warm Homes scheme.58 The IMPRESS Patient BITs has information on this. It is possible that there may be more than one contributing factor to breathlessness. The patient may have anxiety, COPD and anaemia. The objective of the assessment is to identify the prime cause because it will affect the treatment plan. The consultation

55 van Dixhoorn J, Duivenvoorden HJ. Efficacy of Nijmegen Questionnaire in recognition of the hyperventilation syndrome. J Psychosom Res. 1985;29(2):199-206. 56 Porter ME. What is value in health care? N Engl J Med 2010; 363:2477-81 DOI10.1056/NEJMp1011024 57 DH England. An Outcomes Strategy for COPD and Asthma: NHS Companion Document. May 2012. Accessed November 2013 from https://www.gov.uk/government/publications/an-outcomes-strategy-for-copd-and-asthma-nhs-companion-document 58 Donaldson GC, Wedzicha JA. Deprivation, winter season and COPD exacerbations. Prim Care Respir J 2013;22(3):264-265. DOI: http://dx.doi.org/10.4104/pcrj.2013.00078

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itself forms the beginning of talking therapy, if a person is anxious. If you prescribe drugs for each of the contributing factors consider:

• Will you repeat all the prescriptions each time? • How will you assess the potential benefit of each? • How will you ever remove any? • What will you do if the symptoms aren’t successfully managed? Personalised management plan Offer the patient a personalised management plan guided by local protocols which will summarise the interventions that you have agreed and provide guidance on how to access advice, contact details for the main healthcare professional contact and details of follow-up arrangements. Behavioural interventions In addition to smoking and alcohol, don’t be afraid to address issues such as obesity and general levels of fitness. Patients who are breathless will benefit from you offering psychological interventions to help them change the behaviours causing or aggravating their breathlessness (eg smoking, weight management, incorrect inhaler use, lack of physical activity, dysfunctional breathing). We do not yet know which psychological interventions work best for which conditions, therefore use the psychological intervention that you are most competent in, and consider additional training for you and your team so that you can tailor the psychological intervention to the individual.59 60 61 62 The IMPRESS Patient BITs has further guidance about breathing techniques. Vaccination Offer influenza (annual) and pneumococcal vaccination (once) to breathless patients and their immediate family and carers to protect them from increased mortality and hospitalisation. 63 64 65 66 Ensure staff who come into contact with breathless patients also receive influenza vaccination.67 Stop smoking support 59 Clini EM, Ambrosino N. Nonpharmacological treatment and relief of symptoms in COPD. Eur Respir J. 2008 July 1, 2008;32(1):218-28. 60 Abraham C, Michie S. A taxonomy of behavior change techniques used in interventions. Health psychology : official journal of the Division of Health Psychology, American Psychological Association. 2008 May;27(3):379-87. PubMed PMID: 18624603. Epub 2008/07/16. eng. 61 Michie et al. The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science 2011, 6:42 http://www.implementationscience.com/content/6/1/42 (23 April 2011)

62 Atkins, L. and Michie, S. (2013), Changing eating behaviour: What can we learn from behavioural science? Nutrition Bulletin, 38: 30–35. doi: 10.1111/nbu.12004 63 Acute respiratory illness in patients with COPD and the effectiveness of influenza vaccination: a randomized controlled study. Chest 2004; 125:2011-20 64 Calderón-Larrañaga A, Carney L, Soljak M, Bottle A, Partridge M, et al. (2011) Association of population and primary healthcare factors with hospital admission rates for chronic obstructive pulmonary disease in England: national cross-sectional study. Thorax 66: 191–196. doi: 10.1136/thx.2010.147058. 65 Relation between influenza vaccination and outpatient visits, hospitalization, and mortality in elderly persons with chronic lung disease. Ann Intern Med. 1999; 130(5):397-403 66 Kings Fund report: Emergency hospital admissions for ambulatory care-sensitive conditions: identifying the potential for reductions. April 2012 67 Three NHS England fully referenced letters to staff 2013/14: for doctors http://www.nhsemployers.org/SiteCollectionDocuments/Staff%20flu%20letter%20for%20Doctors.pdf for nurses and midwives: http://www.nhsemployers.org/SiteCollectionDocuments/Flu%20vaccination%20letter%20for%20nurses%20and%20midwives.pdf and for AHPs http://www.nhsemployers.org/SiteCollectionDocuments/Flu%20vaccination%20letter%20for%20AHPs.pdf

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Continued smoking of tobacco and other substances will make breathlessness worse and may hinder treatments i.e. inhaled corticosteroids in asthma and COPD.68 Use pharmacology plus counselling to treat the patient and help them stop.69 Or refer to stop smoking services. Weight management If the person’s weight is the problem, try to address their breathlessness including re-breathing education if necessary, and then refer to the local weight management service following referral protocols (in England these changed from April 2013). Note that men with weight problems and breathlessness tend to approach services later than women. Alcohol management There is consistent evidence from a large number of studies that brief intervention in primary care can reduce a person’s total alcohol consumption and episodes of binge drinking in hazardous drinkers for periods lasting up to a year. According to SIGN the intervention should, wherever possible, relate to the presenting problem, in this case, breathlessness, and should help the patient weigh up any benefits they perceive versus the disadvantages of their current drinking pattern.70 Anxiety management Anxiety can be successfully treated. Approaches using cognitive therapy are most effective with established health anxieties,71 and these can be used successfully by non-mental health specialists using six sessions of brief intervention.72

The NICE guideline offers a clear stepped treatment plan and the latest evidence confirms the effectiveness of this approach71 72 Step 1: Education and active monitoring Step 2: Low-intensity psychological interventions including individual non-facilitated self-help, individual guided self-help and psycho-educational groups such as IAPT Step 3: an individual high-intensity psychological intervention or drug treatment Step 4: referral 73 Physical activity Physical exercise improves outcomes for people with chronic disease. 74 75 76 A recent BMJ paper concluded that whilst physical exercise has considerable health benefits ”there is considerable uncertainty as to the effectiveness of primary care interventions

68 Polosa R, Thomson NC. Smoking and asthma: dangerous liaisons. European Respiratory Journal. 2013 March 1, 2013;41(3):716-26. 69 Cahill K, Stevens S, Perera R, Lancaster T. Pharmacological interventions for smoking cessation: an overview and network meta-analysis. Cochrane Database of Systematic Reviews [Internet]. 2013; (5). Available from: http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD009329.pub2/abstract 70 Scottish Intercollegiate Guidelines Network (SIGN) The management of harmful drinking and alcohol dependence in primary care. Section 3: Brief interventions for hazardous and harmful drinking. Available at www.sign.ac.uk/guidelines/fulltext/74/section3.html 71 Kroenke, K. (2007) Efficacy of Treatment for Somatoform Disorders: A Review of Randomised Controlled Trials. Psychosomatic Medicine, 69: 881-888 72 Tyrer P et al Clinical and cost-effectiveness of cognitive behaviour therapy for health anxiety in medical patients: a multicentre randomised controlled trial. The Lancet, Available online 18 October 2013 73 NICE Clinical Guideline 113. Generalised anxiety disorder and panic disorder (with or without agoraphobia) in adults. Management in primary, secondary and community care. January 2011. 74 NICE Public Health Guidance 44 (PH44): Physical Activity: brief advice for adults in primary care. May 2013 75 Garcia-Aymerich J, Lange P, Benet M, Schnohr P, Anto JM. Regular physical activity reduces hospital admission and mortality in chronic obstructive pulmonary disease: a population based cohort study. Thorax 2006;61:772-8. 76 Cochrane Systematic Review: Ussher MH et al. Exercise interventions for smoking cessation. Cochrane Reviews, 2012, Issue 1. Article No. CD002295. DOI: 10.1002/14651858.CD002295.pub4.

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for increasing physical activity.” 77 Therefore primary care clinicians should give brief advice to most patients about the benefits of exercise and refer patients with chronic disease to a rehabilitation programme that includes an exercise intervention. It proposes “A more nuanced consideration of the effectiveness of different types of physical activity is warranted because the relative dearth of evidence leaves substantial uncertainty on which patients would benefit more from what type of exercise, and what would be effective in different settings.” Programmed rehabilitation NICE guidelines strongly recommend programmed rehabilitation for COPD and for heart failure.34 35 IMPRESS has strongly recommended the value of pulmonary rehabilitation based on the evidence. Compared to community care without pulmonary rehabilitation, pulmonary rehabilitation reduced hospital admissions for people with COPD over 34 weeks (number needed to treat (NNT)= 3) and mortality over 107 weeks (NNT=6).78 There is a need to optimise, not maximise, prescribing before referral. There are insufficient pulmonary rehabilitation (PR) programmes in England79 but an even greater lack of cardiac rehabilitation (CR) programmes accessible to people with heart failure. Heart failure patients can be incorporated into existing CR programmes, but in the 2010 national audit of CR, only 1% of patients recorded in the audit had a diagnosis of heart failure,80 and in the 2013 audit of acute heart failure only 11% of patients admitted with acute heart failure were referred to CR compared to an Outcomes Strategy target of one third.3 14The shortage could be addressed by increasing the places available in cardiac rehabilitation programmes, and/or inviting people with heart failure to PR clinics. Programmes for people with COPD, heart failure or both have been shown to be effective; and there are no safety reasons to exclude patients with heart failure except those with arrhythmias.81 In a current scheme in Mansfield based on this study, referrals to PR are received from heart failure nurses, as well as GPs and respiratory teams82. In the published studies, the enrolled patients had similar exercise needs. It is also important to influence commissioning priorities to expand places available. This needs to be accompanied by support for referrers to build their confidence in promoting programmed rehabilitation to their breathless patients. Prescribing Before prescribing in line with NICE guidance review all medication including over-the-counter medication and always check use and adherence. Some medications can worsen the condition, eg beta blockers are contra-indicated in asthma or bronchospasm, but now we can, and should, use them if indicated in people with heart disease and stable COPD without reversibility.83 Treatment for beta blockers should be started at a low dose, and slowly titrated up. If symptoms worsen, a reduction in dose, or withdrawal, may be necessary. Bisoprolol or nebivolol may be preferred to

77 Naci H et al. Ioannidis JPA. Comparative effectiveness of exercise and drug interventions on mortality outcomes: metaepidemiological study. BMJ 2013;347:f5577 doi: 10.1136/bmj.f5577 78 IMPRESS Guide to Pulmonary Rehabilitation downloadable from http://www.impressresp.com/index.php?option=com_content&view=article&id=38&Itemid=32 79 Commissioning toolkit from Department of Health England (respiratory) https://www.gov.uk/government/publications/commissioning-toolkit-for-respiratory-services 80 The national audit of cardiac rehabilitation. York: British Heart Foundation. 2010. 81 Evans R.A., Singh S.J., Collier R., Loke I., Steiner M.C., Morgan M.D.L. Generic, symptom based, exercise rehabilitation; Integrating patients with COPD and heart failure (2010) Respiratory Medicine, 104 (10) , pp. 1473-1481. 82 Personal communication. More information available on request. 83 van Gestel YRBM, Hoeks SE, Sin DD, et al. Impact of cardioselective b-blockers on mortality in patients withchronic obstructive pulmonary disease and atherosclerosis. Am J Respir Crit Care Med 2008; 178: 695–700.

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carvedilol, as these are more cardioselective.84 Psychotropic medication may help anxiety e.g. antidepressants, but some of these are sedative e.g. amitryptiline. Benzodiazepines are still used for acute anxiety and as hypnotics but this may be relatively contra-indicated with respiratory and other conditions, therefore it is best to consult with colleagues before prescribing any medication for breathless patients who are anxious.

Nice Treatment Guidelines Asthma COPD Heart failure: In prescribing, normally apply the maxim “start low, go slow, aim high” for heart failure medicines, and redress the underuse of ace inhibitors and beta blockers which are highly cost-effective given their outcomes and the relatively low cost of the medicines.85 86 Atrial fibrillation and heart failure Angina and heart failure Anxiety

If considering breathlessness due to myocardial ischaemia, follow NICE and ESC guidance which recommends assessing the patient’s risk of cardiovascular disease and arranging follow up assessment based on this risk: if the patient has symptoms, refer to the heart failure service, otherwise manage the patient’s risk factors.

Oxygen Oxygen treats hypoxia not breathlessness and can do harm. Oximetry is a vital sign and should be used before any prescription of oxygen. All patients prescribed oxygen for long term use should be referred to the local Home Oxygen Assessment and Review service (HOSAR) for correct assessment and prescription. 87 88 Does the patient have a progressive or life-shortening condition that would benefit from advance care planning discussions and treatment escalation planning? No Continue with planned management. Yes Does the patient have an advance care plan and appropriate treatment escalation plan? No Ensure this is done. There are some useful resources for the non-pharmacological interventions for advanced breathlessness.89 84 NICE Clinical Knowledge Summaries http://cks.nice.org.uk/chronic-obstructive-pulmonary-disease 85 Fonarow GC, Yancy CW, Hernandez AF, Peterson ED, Spertus JA, Heidenreich PA. Potential impact of optimal implementation of evidence-based heart failure therapies on mortality. Am Heart J. 2011 Jun;161(6):1024-30.e3. doi: 10.1016/j.ahj.2011.01.027. 86 Trent WGAP report: Guidance note for purchasers on ace inhibitors in heart failure 87 Holmes S, Peffers S-J. Pulse Oximetry in Primary Care. Primary Care Respiratory Society UK, 2009 88 IMPRESS. Rationalising oxygen use to improve patient safety and to reduce waste. The IMPRESS step-by-step guide. 2nd edition, May 2011. Downloadable from www.impressresp.com 89 Taylor J. The non-pharmacological management of breathlessness. End of Life Care. 2007;1:20-29 Available at http://endoflifecare.co.uk/journal/0101_breathlessness.pdf

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Yes Refer to palliative care including palliative care consultant, specialist community nurses, Macmillan, Social Care, palliative care nurses, hospice, GP with special interest. Box - Skills and training Early patient engagement in long term condition management tends to improve outcomes. For example, engaging patients who smoke by showing them the Fletcher Peto curve on the impact of stopping smoking can alter their disease trajectory if they then choose to quit. Working with patients improves value through more appropriate use of medicines and resources.90 91 92 93 Allocate time and expert resource based on both the patient’s clinical profile and also their capabilities, opportunities and motivation to cope and, for example, be physically active, eat well, stop smoking and self-manage. “Titrate” your help accordingly.94 95 In particular, current smokers with breathlessness due to diseases caused by smoking are usually highly tobacco-dependent and will need evidence-based treatment for high levels of addiction. In order to support your patients to live better with breathlessness, consider what skills training and materials you may need to use evidence-based approaches to elicit health beliefs about cause, timeline, consequence and treatment. IMPRESS Breathlessness Working Party January 2013 for a full list of Working Party members see http://www.impressresp.com 90 Hulka BS, Cassel JC, Kupper LL, Burdette JA. Communication, compliance, and concordance between physicians and patients with prescribed medications. American journal of public health. 1976 1976/09/01;66(9):847-53 91 Keilmann T, Huby G, Powell A, Sheikh A, Price D, Williams S, Pinnock H. From support to boundary: A qualitative study of the border between self-care and professional care. Patient education and counseling. 2010;79(1):55-61. 92 Ley, P. (1988) Communicating with Patients. London: Croom Helm. 93 Ley, P. (1989). Improving patients' understanding, recall, satisfaction and compliance. In: Broome, A. (ed.) Health Psychology. London: Chapman & Hall

94 Entwhistle V. Cribb A. Enabling people to live well. Fresh thinking about collaborative approaches to care for people with long-term conditions. Health Foundation May 2013.

95 Michie et al. The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science 2011, 6:42 http://www.implementationscience.com/content/6/1/42 (23 April 2011)

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Further reading This programme of work from IMPRESS also includes:

• Impressions Blog 31: breathlessness • The Introduction • Methodology, Scope and Definitions • Breathlessness prevalence modelling for COPD, heart failure, anxiety and

obesity • BITs for patients, • BITs for commissioners

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• BITs for researchers

Multi-morbidity Barnett K et al. Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study Lancet 380(9836), 37-43 DOI:10.1016/S0140-6736(12)60240-2 Guthrie et al. Adapting clinical guidelines to take account of multimorbidity BMJ 2012;345:e6341

Assessment and diagnosis of breathlessness

Banzett, R. B. & Mossavi, S. Dyspnea and pain: similarities and contrasts between two very unpleasant sensation. APS Bulletin 11, 1–8 (2001).

Banzett, R. B., Pedersen, S. H., Schwartzstein, R. M. & Lansing, R. W. The affective dimension of laboratory dyspnea: air hunger is more unpleasant than work/effort. American journal of respiratory and critical care medicine 177, 1384–90 (2008).

Bausewein, C., Farquhar, M., Booth, S., Gysels, M. & Higginson, I. J. Measurement of breathlessness in advanced disease : A systematic review. 399–410 (2007).doi:10.1016/j.rmed.2006.07.003

Bjelland, I., Dahlb, A. A., Haugc, T. T. & Neckelmannd, D. The validity of the Hospital Anxiety and Depression Scale: An updated literature review. Journal of psychosomatic research, 52 (2) 69–77 (2002).at http://www.sciencedirect.com.gate2.library.lse.ac.uk/science/article/pii/S0022399901002963

Bowden, J. a, To, T. H. M., Abernethy, A. P. & Currow, D. C. Predictors of chronic breathlessness: a large population study. BMC public health 11, 33 (2011).

Frese, T., Sobeck, C., Herrmann, K. & Sandholzer, H. Dyspnea as the reason for encounter in general practice. Journal of clinical medicine research 3, 239–46 (2011).

Harty, H and Adams, L. Assessment of dyspnoea in research. Supportive care in respiratory disease 123–134 (2005).

Mahler, D. A. et al. American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease. Chest 137, 674–91 (2010).

Mamtani, M. R. & Kulkarni, H. R. Predictive performance of anthropometric indexes of central obesity for the risk of type 2 diabetes. Archives of medical research 36, 581–9

Parshall, M. B. An Official American Thoracic Society Statement: Update on the Mechanisms, Assessment, and Management of Dyspnea. Am J Respir Crit Care Med

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Vol 185, Iss. 4 435–452 (2012).at <http://www.thoracic.org/statements/resources/respiratory-disease-adults/update-on-mamd.pdf>

Pedersen, F. et al. Evaluation of dyspnoea in a sample of elderly subjects recruited from general practice. International journal of clinical practice 61, 1481–91 (2007).

Pischon, T. et al. General and abdominal adiposity and risk of death in Europe. The New England journal of medicine 359, 2105–20 (2008).

Pratter, M. R. Cause and Evaluation of Chronic Dyspnea in a Pulmonary Disease Clinic. Archives of Internal Medicine 149, 2277 (1989).

Pratter, M. R., Abouzgheib, W., Akers, S., Kass, J. & Bartter, T. An algorithmic approach to chronic dyspnea. Respiratory medicine 105, 1014–21 (2011).

Preis, S. R. et al. Neck circumference as a novel measure of cardiometabolic risk: the Framingham Heart study. The Journal of clinical endocrinology and metabolism 95, 3701–10 (2010).

Sarkar, S and Amelung, PJ. Evaluation of the dyspneic patient in the office. Primary care 33, 643–57 (2006)

Simon, S. T. et al. Episodic and Continuous Breathlessness: A New Categorization of Breathlessness. Journal of pain and symptom management (2012).doi:10.1016/j.jpainsymman.2012.06.008

Wilson, R. C. & Jones, P. W. Differentiation between the intensity of breathlessness and the distress it evokes in normal subjects during exercise. Clinical science (London, England  : 1979) 80, 65–70 (1991).

Yusuf, S. et al. Obesity and the risk of myocardial infarction in 27,000 participants from 52 countries: a case-control study. Lancet 366, 1640–9 (2005).

Anxiety and mental health DH England. No Health Without Mental Health: a cross-Government mental health outcomes strategy for people of all ages - a call to action. Feb 2011. https://www.gov.uk/government/publications/no-health-without-mental-health-a-cross-government-mental-health-outcomes-strategy-for-people-of-all-ages-a-call-to-action DH England. Achieving parity of esteem between mental and physical health. Speech by Norman Lamb at launch of Making mental health services more effective and accessible https://www.gov.uk/government/speeches/achieving-parity-of-esteem-between-mental-and-physical-health Hoang U et al. Mortality after hospital discharge for people with schizophrenia or bipolar disorder: retrospective study of linked English hospital episode statistics, 1999-2006. BMJ 2011;343:bmj.d5422 Howard C et al. The effectiveness of a group cognitive-behavioural breathlessness intervention on health status, mood and hospital admissions in elderly patients with chronic obstructive pulmonary disease.

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Kroenke, K. (2007) Efficacy of Treatment for Somatoform Disorders: A Review of Randomised Controlled Trials. Psychosomatic Medicine, 69: 881-888

McManus S, Meltzer H, Brugha T, Bebbington P, Jenkins. Adult psychiatric morbidity in England, 2007: results of a household survey. The NHS Information Centre for health and social care, 2009  NICE Clinical Guideline 113. Generalised anxiety disorder and panic disorder (with or without agoraphobia) in adults. Management in primary, secondary and community care. January 2011.

Thomson A, Page L. Psychotherapies for hypochondriasis. Cochrane Database of Systematic Reviews 2007, Issue 4. Art. No.: CD006520. DOI: 10.1002/14651858.CD006520.pub2.  Tyrer, P. et al Clinical and cost-effectiveness of cognitive behaviour therapy for health anxiety in medical patients: a multicentre randomised controlled trial. The Lancet Published online October 18, 2013 http://dx.doi.org/10.1016/S0140-6736(13)61905-4 [Abstract]

COPD

DH England. Commissioning toolkit for respiratory services. August 2012. https://www.gov.uk/government/publications/commissioning-toolkit-for-respiratory-services DH England An outcomes strategy for people with chronic obstructive pulmonary disease (COPD) and asthma in England https://www.gov.uk/government/publications/an-outcomes-strategy-for-people-with-chronic-obstructive-pulmonary-disease-copd-and-asthma-in-england DH England. An Outcomes Strategy for COPD and Asthma: NHS Companion Document https://www.gov.uk/government/publications/an-outcomes-strategy-for-copd-and-asthma-nhs-companion-document   National Clinical Guideline Centre. (2010) Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care. London: National Clinical Guideline Centre. NICE QS10 Chronic obstructive pulmonary disease quality standard issued July 2011 http://publications.nice.org.uk/chronic-obstructive-pulmonary-disease-quality-standard-qs10 Gray M. Optimising the value of interventions for populations. BMJ 2012;345:e6192 doi: http://dx.doi.org/10.1136/bmj.e6192 (Published 17 September 2012) IMPRESS Guide to the relative value of interventions for people with COPD. A population-based approach to improving outcomes for people with chronic obstructive pulmonary disease based on the cost of delivering those outcomes. Williams S et al. BTS Reports. Vol 4. Issue 2. 2012. http://www.impressresp.com/index.php?option=com_content&view=article&id=167:impressions-28-relative-value-of-copd-interventions&catid=11:impressions&Itemid=3

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Williams S. Getting value from COPD interventions 14 December, 2012 accessed http://www.hsj.co.uk/home/innovation-and-efficiency/-getting-value-from-copd-interventions/5052249.article

Heart failure

Clinical knowledge summaries, NICE, Last revised in November 2010 http://cks.nice.org.uk/heart-failure-chronic#!scenariorecommendation:23 DH Cardiovascular Disease Team. Cardiovascular Disease Outcomes Strategy. March 2013. Available to download from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/217118/9387-2900853-CVD-Outcomes_web1.pdf

ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure 2012. The Task Force for the Diagnosis and Treatment of Acute and Chronic Heart Failure 2012 of the European Society of Cardiology. Developed in collaboration with the Heart Failure Association (HFA) http://www.escardio.org/guidelines-surveys/esc-guidelines/GuidelinesDocuments/Guidelines-Acute and Chronic-HF-FT.pdf

NICE. Implementing NICE guidance. Clinical Guide 108. Shared learning: use of the scenarios simulation in the introduction of serum natriuretic peptide testing. 2011

http://www.nice.org.uk/nicemedia/live/13099/55149/55149.pdf NICE. Chronic heart failure: management of chronic heart failure in adults in primary and secondary care (NICE clinical guideline 108). Quick reference guide: http://www.nice.org.uk/nicemedia/live/13099/50526/50526.pdf Full guide: http://www.nice.org.uk/cg108 QS9 chronic heart failure quality standard issued June 2011 http://publications.nice.org.uk/chronic-heart-failure-quality-standard-qs9

National Institute for Cardiovascular Outcomes Research (NICOR). National Heart Failure Audit 6th Annual Report April 2012-March 2013. November 2012. Accessed 27 November 2013 https://www.ucl.ac.uk/nicor/audits/heartfailure/additionalfiles/pdfs/annualreports/annual12.pdf Martin R Cowie, Paul O Collinson, Henry Dargie, FD Richard Hobbs, Theresa A McDonagh, Kenneth McDonald, Nigel Rowell, Recommendations on the clinical use of B-type natriuretic peptide testing (BNP or NTproBNP) in the UK and Ireland March 2010 Volume 17, Issue 2 Br J Cardiol 2010;17:76–80

Chronic heart failure, Shared learning: use of the scenarios simulation in the introduction of serum natriuretic peptide testing Implementing NICE guidance: NICE clinical guideline 108 http://www.nice.org.uk/nicemedia/live/13099/55149/55149.pdf

Fonarow GC, Yancy CW, Hernandez AF, Peterson ED, Spertus JA, Heidenreich PA. Potential impact of optimal implementation of evidence-based heart failure therapies on mortality. Am Heart J. 2011 Jun;161(6):1024-30.e3. doi:

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10.1016/j.ahj.2011.01.027. Trent WGAP report: Guidance note for purchasers on ace inhibitors in heart failure

Raphael C. Limitations of the New York Heart Association functional classification system and self‐reported walking distances in chronic heart failure Heart. 2007 April; 93(4): 476–482. Published online 2006 September 27. doi: 10.1136/hrt.2006.089656

Patient empowerment, enablement and activation Care Planning. Improving the Lives of People with Long Term Conditions. Royal College of General Practitioners. Clinical Innovation and Research Centre 2011 (see above)

Entwhistle V. Cribb A. Enabling people to live well. Fresh thinking about collaborative approaches to care for people with long-term conditions. Health Foundation May 2013.

Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in patients and consumers. Health Services Research 2004: 39:1005-1026.

Howard C et al. The effectiveness of a group cognitive-behavioural breathlessness intervention on health status, mood and hospital admissions in elderly patients with chronic obstructive pulmonary disease. Psychol Health Med. 2010 Aug;15(4):371-85. 2010 DOI:10.1080/13548506.2010.482142

Leventhal, I.I., Meyer, D., & Nerenz, D.R. (1980). The common sense representations of illness danger. In S. Rachman (Ed.), Contributions to medical psychology. NewYork: Pergamon. Ley, P. (1988) Communicating with Patients. London: Croom Helm. Ley, P. (1989). Improving patients' understanding, recall, satisfaction and compliance. In: Broome, A. (ed.) Health Psychology. London: Chapman & Hall

Michie et al. The behaviour change wheel: A new method for characterising and designing behaviour change interventions. Implementation Science 2011, 6:42 http://www.implementationscience.com/content/6/1/42 (23 April 2011)

Powell, R. Powell, H. Baker, L. & Greco, M. (2009) Patient Partnership in Care: A new instrument for measuring patient–professional partnership in the treatment of long-term conditions. Journal of Management & Marketing in Healthcare. Vol. 2 No. 4. PP 325–342.

Tools

LTC6: Supporting the local implementation of the Year of Care Funding Model for people with long- term conditions QIPP long term conditions downloadable from http://www.selfmanagement.co.uk/sites/default/files/files/Supporting%20the%20local%20implementation%20of%20the%20year%20of%20care%20funding.pdf

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Living with your Long Term Condition (LWYLTC) Patient Survey ‘The Year of Care Consultation Skills and Philosophy Toolkit : Mind your language.’ Copyright is owned by the Year of Care NHS Diabetes programme

CQI (Consultation Quality Index) Version adapted for Diabetes sourced from Year of Care website,www.diabetes.nhs.uk/year_of_care/evaluating_the_year_of_care/what_is_being_measured/

Health Care Climate Questionnaire (HCCQ) http://www.selfdeterminationtheory.org/questionnaires/10-questionnaires/81

Team Climate Questionnaire (TCQ) Source National Patient Safety Agency http://www.nrls.npsa.nhs.uk/resources/?entryid45=59884

Stop smoking Anthonisen NR, Skeans MA, Wise RA, Manfreda J, Kanner RE, Connett JE; Lung Health Study Research Group. The effects of a smoking cessation intervention on 14.5-year mortality: a randomized clinical trial. Ann Intern Med 2005;142(4):233-9. Barth J, Critchley JA, Bengel J. Psychosocial interventions for smoking cessation in patients with coronary heart disease.Cochrane Database of Systematic Reviews 2008, Issue 1. Art. No.: CD006886. DOI: 10.1002/14651858.CD006886 Dempsey OJ, Miller M. Idiopathic pulmonary fibrosis. BMJ 2013;347:f6579 Hoogendoorn M. Feenstra TL. Hoogenveen RT. Rutten-van Molken MP. Long-term effectiveness and cost-effectiveness of smoking cessation interventions in patients with COPD. Thorax 2010;65(8):711-18. DOI: 10.1136/thx.2009.131631 Jiminez Ruiz CA et al. Characteristics of COPD Smokers and Effectiveness and Safety of Smoking Cessation Medications Nicotine Tob Res (2012) 14(9): 1035-1039 first published online February 17, 2012 Kanner RE, Connett JE, Williams DE, et al: Effects of randomized assignment to a smoking cessation intervention and changes in smoking habits on respiratory symptoms in smokers with early chronic obstructive pulmonary disease: The lung health study. American Journal of Medicine 1999; 106:410-16 Restrick L , Stern M, Baxter N Tiotropium versus salmeterol in COPD.N Engl J Med. 2011;364:2552 Tashkin DP. Rennard S. Hays JT. Ma W. Lawrence D. Lee TC. Effects of varenicline on smoking cessation in patients with mild to moderate COPD: a randomized controlled trial. Chest 2011;139(3):591-9. To T et al. Global asthma prevalence in adults: findings from the cross-sectional world health survey. BMC Public Health 2012, 12:204 doi:10.1186/1471-2458-12-204 van der Meer RM, Wagena E, Ostelo RWJG, Jacobs AJE, van Schayck OP. Smoking cessation for chronic obstructive pulmonary disease. Cochrane Database of Systematic Reviews 2001, Issue 1. Art.No.: CD002999. DOI: 10.1002/14651858. CD002999 Management of harmful drinking and alcohol dependence

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NICE Clinical Guideline CG115. Alcohol-use disorders: diagnosis, assessment and management of harmful drinking and alcohol dependence. February 2011. Available at www.nice.org.uk/cg115 Scottish Intercollegiate Guidelines Network (SIGN) The management of harmful drinking and alcohol dependence in primary care. Section 3: Brief interventions for hazardous and harmful drinking. Available at www.sign.ac.uk/guidelines/fulltext/74/section3.html Obesity, weight management Atkins, L. and Michie, S. (2013), Changing eating behaviour: What can we learn from behavioural science? Nutrition Bulletin, 38: 30–35. doi: 10.1111/nbu.12004 Brumpton BM et al. Metabolic syndrome and incidence of asthma in adults: the HUNT study.Eur Respir J. 2013 Jul 11. [Epub ahead of print] Stream AR. Obesity and asthma disease phenotypes Curr Opin Allergy Clin Immunol. 2012 Feb;12(1):76-81. doi: 10.1097/ACI.0b013e32834eca41. Physical activity Garcia-Aymerich J, et al. Regular Physical Activity Modifies Smoking-related Lung Function Decline and Reduces Risk of Chronic Obstructive Pulmonary Disease. American Journal of Respiratory and Critical Care Medicine, Vol. 175, No. 5 (2007), pp. 458-463. doi: 10.1164/rccm.200607-896OC http://www.atsjournals.org/doi/full/10.1164/rccm.200607-896OC Naci H et al. Ioannidis JPA. Comparative effectiveness of exercise and drug interventions on mortality outcomes: metaepidemiological study. BMJ 2013;347:f5577 doi: 10.1136/bmj.f5577 (Published 1 October 2013) NICE Public Health Guidance 44 (PH44): Physical Activity: brief advice for adults in primary care. May 2013 Ussher MH et al. Exercise interventions for smoking cessation. Cochrane Reviews, 2012, Issue 1. Article No. CD002295. DOI: 10.1002/14651858.CD002295.pub4. This review contains 15 studies involving 4419 participants Rehabilitation British Heart Foundation. The national audit of cardiac rehabilitation. York: 2010. Department of Health England. Commissioning toolkit (respiratory) https://www.gov.uk/government/publications/commissioning-toolkit-for-respiratory-services Evans R.A., Singh S.J., Collier R., Loke I., Steiner M.C., Morgan M.D.L. Generic, symptom based, exercise rehabilitation; Integrating patients with COPD and heart failure (2010) Respiratory Medicine, 104 (10) , pp. 1473-1481. Heran BS, et al. Exercise-based cardiac rehabilitation for coronary heart disease. Cochrane Reviews, 2011, Issue 7. Article No. CD001800. DOI: 10.1002/14651858.CD001800.pub2. This review contains 47 studies involving 10,794 participants IMPRESS Guide to Pulmonary Rehabilitation downloadable from http://www.impressresp.com/index.php?option=com_content&view=article&id=38&Itemi

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d=32 IMPRESS Guide to the Relative Value of interventions for COPD downloadable from http://www.impressresp.com/index.php?option=com_docman&Itemid=82 Muir Gray. Optimising the value of interventions for populations. BMJ 2012;345:e6192 NICE CG101. Chronic obstructive pulmonary disease (updated 2010). http://www.nice.org.uk/cg101 National clinical guideline for diagnosis and management of chronic heart failure in primary and secondary care. NICE clinical guideline 108 http://www.nice.org.uk/nicemedia/live/13099/50514/50514.pdfN NICE QS9 chronic heart failure quality standard issued June 2011 http://publications.nice.org.uk/chronic-heart-failure-quality-standard-qs9 NHS Companion Document. A new action plan for treatment of respiratory problems for the NHS. Value pyramid page 34, paragraph 112. https://www.gov.uk/government/publications/an-outcomes-strategy-for-copd-and-asthma-nhs-companion-document Puhan M et al. Pulmonary rehabilitation following exacerbations of chronic obstructive pulmonary disease. Cochrane Reviews 2009. Issue 1. Article No. CD005305. DOI:10.1002/14651858. CD005305.pub2. This review contains 6 studies involving 219 participants. Seymour JM et al. Outpatient pulmonary rehabilitation following acute exacerbations of COPD. Thorax 2010;65:423-428 doi:10.1136/thx.2009.124164 Williams S. Getting value from COPD interventions. Health Service Journal. 14 Dec 2012. Downloadable from http://www.hsj.co.uk/home/innovation-and-efficiency/-getting-value-from-copd-interventions/5052249.article Oxygen Cornet AD, Kooter AJ, Peters MJ, Smulders YM., Supplemental oxygen therapy in medical emergencies: more harm than benefit?, Arch Intern Med. 2012 Feb 13;172(3):289-90. Holmes S, Peffers S-J. Pulse Oximetry in Primary Care. Primary Care Respiratory Society UK, 2009 IMPRESS. Rationalising oxygen use to improve patient safety and to reduce waste. The IMPRESS step-by-step guide. 2nd edition, May 2011. Downloadable from www.impressresp.com Advance care/end of life care Taylor J. The non-pharmacological management of breathlessness. End of Life Care. 2007;1:20-29 Available at http://endoflifecare.co.uk/journal/0101_breathlessness.pdf

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APPENDICES

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APPENDIX – General Practice Physical Activity Questionnaire General Practice Physical Activity Questionnaire Date……………………… Name…………………….. 1. Please tell us the type and amount of physical activity involved in your work. Please

tick one box that is closest to your present work from the following five possibilities:

Please

mark one box only

a

I am not in employment (e.g. retired, retired for health reasons, unemployed, full-time carer etc.)

b I spend most of my time at work sitting (such as in an office)

c I spend most of my time at work standing or walking. However, my work does not require much intense physical effort (e.g. shop assistant, hairdresser, security guard, childminder, etc.)

d

My work involves definite physical effort including handling of heavy objects and use of tools (e.g. plumber, electrician, carpenter, cleaner, hospital nurse, gardener, postal delivery workers etc.)

e

My work involves vigorous physical activity including handling of very heavy objects (e.g. scaffolder, construction worker, refuse collector, etc.)

2. During the last week, how many hours did you spend on each of the following activities? Please answer whether you are in employment or not Please mark one box only on each row None Some but

less than 1 hour

1 hour but less than 3 hours

3 hours or more

a

Physical exercise such as swimming, jogging, aerobics, football, tennis, gym workout etc.

b Cycling, including cycling to work and during leisure time

c Walking, including walking to work, shopping, for pleasure etc.

d Housework/Childcare e Gardening/DIY 3. How would you describe your usual walking pace? Please mark one box only. Slow pace

(i.e. less than 3 mph) Steady average pace

Brisk pace Fast pace

(i.e. over 4mph)

Hit 'Return' to calculate PAI

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APPENDIX – PHQ4 to assess mental health PHQ4 Over the last 2 weeks, how often have you been bothered by the following problems? Use / to indicate your answer)

Not at all

Several days

More than half the days

Nearly every day

1. Feeling nervous, anxious or on edge 0 1 2 3 2. Not being able to stop or control worrying 0 1 2 3 3. Little interest or pleasure in doing things 0 1 2 3 4. Feeling down, depressed, or hopeless 0 1 2 3

(For office coding: Total score T = + + )

Developed by Drs Robert L Spitzer, Janet BW Williams, Kurt Kroenke and colleagues, with an educational grant from Pfizer Inc. No permission required to reproduce, translate, display or distribute.

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APPENDIX – peak flow charts

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APPENDIX Categorisation of severity of patient’s breathlessness using a validated scale

Medical Research Council Breathlessness Scale – normally completed between the patient and the clinician96

Grade Degree of breathlessness related to activities 1 Not troubled by breathlessness except on strenuous exercise 2 Short of breath when hurrying or walking up a slight hill 3 Walks slower than contemporaries on level ground because of

breathlessness, or has to stop for breath when walking at own pace 4 Stops for breath after walking about 100m or after a few minutes on level

ground 5 Too breathless to leave the house, or breathless when dressing or

undressing

Please note that there have been a number of adaptations to grade 3 of this scale. This is the version recommended by NICE. The original publication asked “Is the patient unable to keep up with normal men on the level, but able to walk about a mile or more at his own speed?” Currow who conducted a general population survey and Ho, who conducted a UK primary care survey used “Stop for breath when walking at my own pace on the level” and “Do you have to stop for breath when walking at your own pace on level ground.” respectively.97 98 For patients with acute episodes of breathlessness on a background of chronic breathlessness eg COPD with acute exacerbations consider recording MRC score when ‘well’ and ‘unwell’.

NYHA Classification – the symptoms of heart failure99 Class Patient symptoms I (Mild) No limitation of physical activity. Ordinary physical activity does not

cause undue fatigue, palpitation, or dyspnoea (shortness of breath) II (Mild) Slight limitation of physical activity. Comfortable at rest, but ordinary

physical activity results in fatigue, palpitation or dyspnoea III (Moderate)

Marked limitation of physical activity. Comfortable at rest, but less than ordinary physical activity results in fatigue, palpitation or dyspnoea

IV (Severe)

Unable to carry out any physical activity without discomfort. Symptoms of cardiac insufficiency at rest. If any physical activity is undertaken, discomfort is increased.

96http:www.nice.org.uk/usingguidance/commissioningguides/pulmonaryrehabilitationserviceforpatientswithcopd/mrc_dyspnoea_scale.jsp accessed 25 July 2013. Adapted from Fletcher, CM, Elmes PC, Fairbairn AS et al. The significance of respiratory symptoms and the diagnosis of chronic bronchitis in a working population. BMJ 2:257-66. 1959. 97 Currow, D. C., Plummer, J. L., Crockett, A., & Abernethy, A. P. (2009). A community population survey of prevalence and severity of dyspnea in adults. Journal of pain and symptom management, 38(4), 533–45. 98 Ho, S. F., O’Mahony, M. S., Steward, J. A., Breay, P., Buchalter, M., & Burr, M. L. (n.d.). Dysponea and quality of life in older people at home. Age Ageing. 2001;30(2):155-9 99 http:www.abouthf.org/questions_stages.htm accessed 25 July 2013

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APPENDIX - Nijmegen Questionnaire Used by Respiratory Physiotherapists to identify who might benefit from breathing training and support*

A score of over 23 out of 64 suggests a positive diagnosis of hyperventilation syndrome. Never Rarely Sometimes Often Very

Often 0 1 2 3 4 Chest pain Feeling tense Blurred vision Dizzy spells Feeling confused Faster or deeper breathing

Short of breath Tight feelings in chest

Bloated feeling in stomach

Tingling fingers Unable to breathe deeply

Stiff fingers or arms

Tight feelings round mouth

Cold hands or feet Palpitations Feeling of anxiety

* van Dixhoorn J, Duivenvoorden HJ. Efficacy of Nijmegen Questionnaire in recognition of the hyperventilation syndrome. J Psychosom Res. 1985;29(2):199-206.

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APPENDIX London Respiratory Team Value Pyramid in the DH Companion Guide