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Finding and managing the ‘missing millions’: The incomplete picture of COPD in the UK

Finding and managing the ‘missing millions’: The incomplete picture of COPD in the UK

Key learning points:

- The ‘missing millions’ or undiagnosed people with COPD symptoms, outnumber those who have been diagnosed

- COPD is generally unheard of by the public, and has been awarded the title of the ‘invisible condition’

- Timely diagnosis of COPD is acknowledged as a factor, in the reduction of early systemic damage

It is estimated that there are over three million people in the UK with chronic obstructive pulmonary disease (COPD).1 COPD is a long term condition which is described as accounting for the death of 25,000 annually in England and Walesand the fifth biggest cause of death in the UK. However, of greater significance is that 10% of people with COPD are initially diagnosed when presenting to an acute unit as an emergency.1,2,3,4,

Approximate data for those diagnosed with COPD is in the order of 900,000.5 While figures for those symptomatic but undiagnosed people with COPD, or the ‘missing millions’ in the UK are considered to be in the 2.2 million range. This article explores some of the issues regarding the incomplete picture of COPD.1,6,7

COPD is described as a disease of the lungs characterised by airflow obstruction or limitation. The airflow obstruction is usually progressive in nature, not fully reversible and does not change markedly over several months. COPD is a complex condition which incorporates a range of symptoms compounded by co-morbidities, and causes not only physical but psychological suffering.9,10

Reasons for COPD

Although smoking is recognised as one of the biggest single causes of COPD, there are other contributory factors.1 A recent UK report by the Health and Safety Executive (HSE) looked at work place related respiratory disease, linking these factors to the UK’s large number of people with COPD.10 In particular substances such as asbestos, silica, diesel engine emissions and mineral oil have been cited as potential causative agents.11 The HSE’s report also noted that in the 12 months prior to publication 31,000 people were diagnosed with respiratory disease due to work place exposure. 1,10

Analysing potential COPD ‘hotspots’ in the UK has been the subject of various studies. The research outcomes have identified industrial or ex-industrial areas as potential sources where the missing millions can be found, and also the source of potential COPD admissions.2  Specific population groups in the analysis include those living in social housing, while age ranges span from families of school children to those age 60 and over.5 Climate conditions are another factor for hospital admission, and were cited specifically, in a comparative study between deprived areas in Scotland and those households better off.12

Recognising COPD

COPD has been awarded the title of the ‘invisible condition’. It is generally unheard of by the public, so why it happens and what can be done about it, remain a mystery to many.13

COPD patients often accept and alter their lives to accommodate the symptoms of their disease, which many consider to be a natural progression of ageing. While exacerbations are ‘looked on’ as an interlude of real illness and post exacerbation a ‘return to normal’.14  Evidence suggests that those who are symptomatic due to smoking avoid GP visits knowing they will be told to stop smoking.15

Studies have suggested that objective assessment of smoking status in chest clinics, GP surgeries and pharmacies, would provide insights and assist in early diagnosis. In particular those people whose condition may be mild to moderate and would not have reached stage 3 in the Medical Research Council Scale (MRC). 2,11,16,17

Early detection would provide this group of people with the greatest health benefits. Timely intervention is considered crucial in effective COPD management, and is recognised as a factor in the improvement of quality of life and survival.1,16,17

However, health care professionals have been attributed with having a low recognition of COPD which has been considered a contributory factor of under diagnosis in the early stages.19,20

COPD diagnosis often occurs when the person has reached stage 4 of the MRC, a phase when increased exacerbations and subsequent hospitalisations are more common and when significant lung function may have been affected. 6,17

Some of the issues regarding diagnosis of the condition may be due to previous diagnosis practice which was based on spirometry results, and the comparison between forced expiratory volume (FEV) and forced vital capacity FEV. As these measurements may change with the ageing process there is the potential to over diagnose the young and under diagnose the older person.21

 Diagnosis is now based on people having one or more indicators of the disease, which include a history of smoking or exposure and the accompanying symptoms of cough, sputum, wheeze or breathlessness and spirometry is used to provide a definite diagnosis.6,9,22

Definitive diagnosis can be problematic, and although fixed airflow limitation is indicative of COPD, research has identified that up to 30% of patients may have a history of asthma.23

Also not all COPD patients have fixed airways with some demonstrating a degree of reversibility without asthmatic symptoms. This patient category is usually older and male with longer disease duration.24

Who’s role to diagnose

The primary health sector has been considered a major player in detecting those with undiagnosed COPD, however as this condition spans both acute and community health sectors it is ambitious to suggest that primary care alone has the ability to drive up improvements in respiratory care.25 The issues surrounding diagnosis of COPD are supported by evidence suggesting that up to 25% of people are misdiagnosed with COPD.26 Also that many people consult their GP with two or more respiratory symptoms in the two years prior to diagnosis.3,27

Spirometry is regarded not only as the essential tool for diagnostic purposes of COPD and accurate interpretation. But is essential in diagnosing condition severity and medication response in respiratory care.28 However, the ability of primary care staff  to perform and accurately interpret spirometry has been subject to question.25

The nurse has been described as often the first point of contact, and has been defined as key in the prevention, care and management of patients with COPD in both in the acute and primary setting.29

This view was supported by a study identifying that upwards of 68% of respiratory care management was provided by nurses, while less than 20% of nurses performing spirometry had received formal training.30,31 COPD training for primary nurses has been described as poorly defined, non-specific and ‘lacking standardised competences’.32,33 This is contrary to the guidelines within the NICE COPD outcomes, which have included incentivising primary care to provide clinical management and staff training.7,32 However, there is little evidence of success regarding outcomes improvement for those already on the COPD registers and deemed most at risk.34 Which provides a ‘bleak’ picture for those as yet undiagnosed.


This article has sought to identify some of the factors that contribute to identifying the missing millions, those with COPD who are either unaware or undiagnosed.

The current World Health Organization statistics demonstrate that premature mortality from COPD in the UK is greater than breast, prostate and bowel cancer.35 It is not surprising that finding the ‘missing millions’ is high on the healthcare agenda when considering that COPD is a major cause of hospital admissions and current estimates demonstrate the condition costs over 800million to the NHS per year.3,12

COPD has been linked to a range of factors including a direct correlation between smoking, and socio economic issues. However there are also other issues regarding health beliefs which includes an acceptance by some to ascribe their symptoms to the ageing process. Early diagnosis is essential to prevent the decline of lung function which is faster in the earlier stages.14,24

Timely diagnosis of COPD is not only acknowledged as a factor in the prevention of early systemic changes, but also motivational in the promotion of healthier lifestyles such as smoking cessation and healthy eating.

 Also it is significant  that high hospital admission rates for patients with COPD have been found to be affected by the quality and quantity of primary health care services.36

The issues surrounding the appropriate training of primary care staff, in particular nurses, need to be addressed to support the identification and management of patients with COPD.3,37,38 

Therefore, finding the ‘missing millions’ remains compounded by the fact that COPD is a condition that is often unrecognised, remains significantly under diagnosed, and for many is life changing.32,39


1. Department of Health. An outcomes strategy for Chronic Obstructive Pulmonary Disease (COPD) and Asthma in England. Crown Copyright 2011. First published 18 July 2011.

2. British Lung Foundation Case Study: Using a targeted approach to finding the ‘missing millions suffering from COPD-South Tyneside ‘Love your lungs’ campaign. Experian; 2010.

3. Department of Health COPD Commissioning Toolkit: A resource for commissioners. Crown copyright 2012.

4. National Statistics. Deaths by age sex and selected underlying cause, 2008 registrations. 

5. Jarrold I, Eiser N, Leach K, Lethbridge T. (2009) Who and where are the missing millions of COPD patients in the UK? British Lung Foundation, London UK

6. National Collaborating Centre for Chronic Conditions, Chronic Obstructive Pulmonary Disease. National clinical guidelines on management of chronic obstructive pulmonary disease in adults in primary and secondary care. Thorax 2004; 59 (Suppl 1): 1-232

7. NICE. National Institute for Health and Care Excellence; COPD quality standard. (QS 10) 2011 July.

8. Gore J M, Brophy C J, Greenston M A. How well do we care for patients with end stage chronic obstructive pulmonary disease (COPD)? A comparison of palliative care and quality of life in COPD and lung cancer. Thorax 2000; 55:1000-6. [PMC free article][PubMed].

9. National Institute of Health and Care Excellence. Management of chronic obstructive pulmonary disease in primary and secondary care. CG 10 London. National Clinical Guideline Centre; 2010

10.  Health and Safety Executive 2014. Work related respiratory disease.

11. NHS Commissioning Board. The CCG Outcome Indicator Set 2013/14; 2012 Available from:

12. Donaldson G C, Wedzicke J A. Deprivation, Winter Season and COPD Exacerbation. Primary Care Respiratory Journal 2013 : 22 (3): 264 – 265

13. National Statistics, Health Statistics Quarterly 30, Summer 2006.

14. Pinnock, H. Living and dying with severe Chronic Obstructive Pulmonary Disease; a multiperspective longitudinal qualitative study. BMJ 2011; 342 d142.

15. Halpin D M G, Ferenbach C, Bellamy D, Rudolph H. On behalf of the BTS consortium. What does the general public know about COPD? Thorax 2002; 57 (supl III):S149, iii45.

16. Pride N B.  Smoking cessation: effects on spirometry and future trends in COPD. Thorax 2001; 56 (Suppl II) ii7-NaN10, NaN10.

17. Stenton C. The MRC Breathlessness Scale. Occupational Medicine London; 2008 58(3)226-7.

18. Dodd J W, Hoff L, Nolan J. The COPD Assessment Test (CAT) response to pulmonary rehabilitation. A multicentre, prospective study. Thorax 2011; 66 (5):425-9.

19. British Lung Foundation Lost in Translation. British Lung Foundation, London: 2006.

20. Marsh S E, Travers J, Weatherall M Proportional classifications of COPD phenotypes. Thorax 2008; 63: pp 761-7.

21. De Marco R.  What evidence could validate the definition of COPD? Thorax September 2008 Vol 63 No 9 p 756-757

22. GOLD. Global Initiative for Chronic Obstructive Lung Disease. Global Strategy for the Diagnosis, Management and Prevention of Chronic Obstructive Pulmonary Disease; 2013  

23. Fabbri L M, Romagnoli M, Corbetta L et al.  Differences in airway inflammation in patient with fixed airflow obstruction due to asthma or chronic obstructive pulmonary disease. Am J Respir Crit Care Med; 2003; 167(3):418-424.

24. Bumbacea D, Campbell D, Nguyen L et al. Parameters associated with persistent airflow obstruction in chronic severe asthma. Eur Respir J; 2004; 24(1): 122-128.

25. Roberts J, Gaduzo S. Finding the ‘missing millions’: do we need incentives to optimise COPD outcomes? Prim Care Respir J 2013; 22 (1): 12-13 DOI.

26. Miller M R, Crapo R, Hankinson J et al. General Considerations for lung function testing. Eur Resoir j 2005; 26: 153-61.

27. Bostock-Cox B. Improving outcomes in COPD. Promoting Excellence in Education and Clinical Practice. Suppl Practice Nursing Vol 21 pp.3; March 2010.

28. Price D, Crockett D, Arne M, Garbe B, Jones R C M, Kaplan A, Langham A, Williams S, Yawn B P. Spirometry in primary care case identification, diagnosis and management of COPD. Prim Care Resp J 2009; 18 (3): 216-23.

29. Macdonald W, Rogers A, Blakeman T, Bower P.  Practice nurses and the facilitation of self-management in long-term conditions: a grounded study. J Adv Nurs 2008; 62:191-9.

30. Blake D, Roberts N J, Partridge M R. How much of a primary care nurse’s time is spent on those with respiratory disease? A pilot study; Prim Care Respir J 2007; 16: 3019-20.

31. Upton J, Madoc-Sutton H, Sheikh A, Frank T L, Walker S, Fletcher M.  National Survey on the roles and training of primary care respiratory nurses in the UK in 2006, are we making progress. Prim Care Resp Journal 2007; 16(5) 284-90.

32. Falzon C, Soljak M, Elkin S, Blake I, Hopkinson N. Finding the missing millions-the impact of a locally enhanced service for COPD on current and projected rates of diagnosis: a population-based prevalence study using interrupted time series analysis. Primary Care Respiratory Journal; Vol 22 Issue 1 March 2013 p 59-63.

33. Nursing and Midwifery Council.  The Code: Standards of Conduct, performance and ethics for nurses and midwives. London; 2008 (Updated 2012).

34. Bosanquet N, Dean L, Iordachescu I, Sheehy C. The effectiveness gap in COPD: a mixed methods international comparative study. Prim Care Resp J; 2013: 22(2) 209-213.

35. WHO Mortality indicators by 67 causes of death, age and sex (HFA-MDB) available at: Updated April 2014.

36. Jones R C M. Hospital admission rates for COPD: the inverse care law is alive and well. Thorax 2011; 66:185-186.

37. British Thoracic Society Guideline Development Group. Intermediate care: Hospital-at-Home in chronic obstructive pulmonary disease: British Thoracic Society guideline. Thorax; 2007; 62(3) 200-10.

38. Fletcher M and Dahl B. Expanding nursing practice in COPD: key to providing high-quality, effective and safe patient care? Prim Care Respir J 2013:22.

39. Schermer T R, Jacobs J E, Chavannes N H, et al. Validity of spirometric testing in a general practice population of patients with chronic obstructive pulmonary disease (COPD) Thorax 2003; 58(10); 861-6.

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