Key learning points:
- The importance of early COPD diagnosis
- The role of the healthcare professional in helping the patient understand and self-manage the disease
- How self-management and evidence-based treatments can be a crucial part of the patient pathway and contribute to the patient’s quality of life
Around three million people are estimated to be living with chronic obstructive pulmonary disease (COPD) in England alone. A staggering 2 million of these are unaware that they have the condition.1 With COPD claiming about 30,000 lives each year, making it the fifth biggest killer in the UK,2 it is vital that we increase the nation’s awareness of its symptoms and dispel the myth of the ‘smoker’s cough’.
COPD is a term that encompasses conditions such as chronic bronchitis and emphysema. Cigarette smoking, although not the only cause, is the single largest risk factor of developing COPD which typically affects people over the age of 35.3 It causes long-term damage to the lungs, which results in a narrowing of the airways and breathing difficulties. Patients with COPD suffer with breathlessness, especially when exercising or moving around. They may also experience a persistent cough, excess mucus production and wheezing. The likelihood of chest infections also increases, particularly during the winter months. It is also necessary to be aware of the comorbidities that are associated with COPD and its development to fully understand how best to manage it.4
An early diagnosis and treatment can make a considerable difference in slowing down the decline in lung function. Exacerbations (or flares ups) are also a common part of living with COPD. Such exacerbations not only cause health decline and impact disease progression, but they are also a key cause of hospital admissions and readmissions. This in itself can cause many other problems for the patient, including malnutrition, anxiety and depression, and places a massive strain on the healthcare system. COPD is the second most common cause of emergency hospital admissions in the UK, with an estimated 94,000 admissions each year, and is one of the most costly inpatient conditions treated by the NHS.5 The annual cost of COPD to the NHS is estimated to be over £800 million for direct healthcare costs, which equates to £1.3 million per 100,000 people.6
Self-management can play a crucial part in the patient pathway, alleviating the increased pressure on the healthcare system by ensuring that fewer COPD patients are admitted and readmitted to hospital. It is also integral to preserving the patient’s sense of autonomy, which can greatly contribute to an individual’s quality of life. It is important that both the patient and the healthcare professional are fully involved in what stage a patient is at on their COPD patient pathway. The British Lung Foundation (BLF) will be releasing a fully comprehensive and interactive COPD patient pathway to help patients and healthcare professionals keep a track of the condition’s development.
Instead of just providing care, healthcare professionals should think about how best to support each individual patient to better self-manage their condition. Talking to patients about the possibility of self-management from diagnosis can be very beneficial in getting the patient to understand the importance it can have in improving their quality of life. Self-management plans are designed to allow a healthcare professional and patient to work through the stages of diagnosis together, helping the patient understand the disease at their own level and pace.
Once the healthcare professional is happy that the patient will be able to understand the concept of a self-management regime, an individualised comprehensive plan can then be devised. Each patient will experience their disease and symptoms differently so their self-management plan will need to be individually tailored to suit them. It needs to be relevant to the symptoms they are trying to manage, the medication they are using and the health and social care services they are accessing. A patient’s medication also needs to be modified to his or her own individual needs; this will change in accordance with the level of symptoms they are experiencing.
Self-management packs, such as the ones developed by
the BLF, can help provide the extra information and tools needed for GPs, respiratory nurses and other healthcare professionals, in consultation with patients, to ensure they meet the patient’s needs exactly.
Self-management is not just about handing a patient a pack, sending them home and expecting them to deal with their COPD alone. In order to gain the best outcomes it is important to highlight the vital role healthcare professionals have from being involved from the start. Firstly, it is essential that patients have a full understanding of their disease. Patients need to know what COPD means, what it is, why they have it and how it will impact their life.
COPD patients live with many unpleasant symptoms; by far the most common is breathlessness. Patients need to understand that breathlessness is a chronic symptom of COPD and that some days their breathing will be better than others. It is important to note that GPs and nurses maintain the responsibility to ensure that any worsening of breathlessness is not just presumed to be due to a natural progression of disease and that other possible causes, for example heart failure, are investigated.
Self-management is not just about coping with symptoms; it is also designed to be an educational tool to be used in conjunction with proven treatments such as smoking cessation and pulmonary rehabilitation (PR). Smoking cessation is an essential evidence-based treatment that has actually shown to slow the progression of COPD. According to the National Institute for Health and Care Excellence (NICE), encouraging patients with COPD to stop smoking is one of the most important components of their management. Most people who successfully give up smoking have had help and support. People know that smoking is bad for them, but it can also be incredibly difficult to give up. It is important to regularly encourage COPD patients who smoke to stop and offer them the full range of evidence-based smoking cessation support including both counselling and pharmacotherapy. However, it must be approached sensitively and in a non-judgmental manner. Patient guilt about smoking is a significant reason behind disengagement, which can become a barrier to the patient and healthcare professional’s relationship, a key factor in self-management.
PR is also a key part of a patient’s treatment and has been shown to be cost-effective in reducing mortality and hospital readmission rates. However, availability and quality of PR is patchy across the UK, with the Department of Health estimating full provision at only 58%.6 Patients with a Medical Research Council (MRC) score of three or greater and/or suffering debilitating breathlessness should be referred to PR wherever possible.
Good self-management support allows people with COPD to manage their symptoms more effectively and to recognise and act upon symptoms at an early stage, which can reduce their reliance on hospital care. Community-based respiratory teams inform and educate patients to improve their understanding of their condition and how to manage it, including advice on physical activity and correct inhaler use. They are also best placed to provide risk assessment, intervene in cases of poor management and to support the transition back into the community for people with COPD who are discharged from hospital. Unfortunately, community-based teams are not consistently available across the country.
Support groups also play a vital role for patients living with COPD and wherever possible a healthcare professional should advocate and offer to refer patients to support groups in their community. Groups such as the BLF’s Breathe Easy groups provide a space for COPD patients to meet other people living with their condition and patients can self-refer. They provide a support network for patients and carers to better understand what it means to live with COPD. They also can provide a social life for patients, a safe environment for them to be active in their lives by making friends and taking part in specifically designed classes such as exercise, singing, dancing and even Tai Chi. Members of these groups even go on to be key influencers of their own care. For example, being user representatives on clinical commissioning group (CCG) committees can be an empowering part of the patient’s journey.
It is vital to remember that self-management packs and rescue packs are not the same thing. Rescue packs are intended to allow patients to self-medicate with antibiotics and oral steroids in the early stages of an exacerbation. However, the evidence suggests that the majority of patients are unable to correctly assess their symptoms, or initiate a rescue pack safely.
GPs and nurses should understand that self-management packs do not require the provision of a rescue pack by default and that patients will benefit more from the advice and guidance packs provide. From the evidence, successful self-managers tend to be younger patients who are not living alone. Self-management plans are more successful when patients have the support of families or carers. Healthcare professionals should be aware of this from the outset.7-10
Self-management can ensure that people diagnosed with and living with COPD receive safe and effective information and guidance which can help to reduce the rate of disease progression, improve exacerbation recovery time and promote independence.
A good self-management plan can also enhance the quality of life for people with COPD encouraging a positive, enabling, experience of care and support right through to the end of life.11 It is important for healthcare professionals and patients to be equipped with the tools needed for a COPD patient’s self-management to be successful. Self-management can go a long way in helping to provide that support in conjunction with local support networks, PR, smoking cessation counselling and an open conversation between the patient and healthcare professional, all of which are vital to helping increase a patient’s quality of life.
British Lung Foundation (PLF)
For more information on COPD and self-management visit
1. Department of Health; An outcomes strategy for COPD and asthma: NHS companion document; NHS Companion Document; 2012.
2. Department of Health; A strategic approach to prevention and early identification of COPD; February 2011.
3. Young RP, et al. Functional variants of antioxidant genes in smokers with COPD and in those with normal lung function. Thorax 2006;61(5):394–39.
4. issam M, Chatila et al; Comorbidities in Chronic Obstructive Pulmonary Disease; American Thoracic Society 2008;5(4);549-555.
5. Department of Health; An outcomes strategy for COPD and asthma: NHS companion document; NHS Companion Document; 2012.
7. Bichoff E et al; Effects of written action plan adherence on COPD exacerbation recovery. Thorax 2001;66;26-31.
8. Bucknall CE et al; Glasgow supported self-management trial for patients with moderate to severe COPD: randomised controlled trial. BMJ; 2012; 344: e1060.
9. Dhami J. Using COPD action plans to manage exacerbations; Nursing Times 2012;108:17,16-18.
10. Fan V, et al. A Comprehensive Care Management Program to Prevent Chronic Obstructive Pulmonary Disease Hospitalizations; Ann Intern Med; 2012;156;673-683.
11.British Lung Foundation. Final report for East & North Hertfordshire CCG; COPD Self-Management Project. June/July, 2013.
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