Our survey provides a unique, global perspective of how COPD patients perceive their illness and its impact on their everyday lives, with a focus on patient attitudes and responses to exacerbations. Recruitment via online research panels aimed to identify ‘real-world’ COPD patients whose views and experiences of the condition were typical of a wider COPD population. Online recruitment had the advantage of assessing a wide cross-section of the population but had the disadvantage of only assessing individuals with access to the internet who were motivated to respond. Therefore, the data herein may under-represent older individuals and over-represent more symptomatic individuals who were motivated to respond. However, the age, gender balance, smoking prevalence, symptom reporting, comorbidities and treatment history of the group suggest that respondents were indeed a representative COPD population.
With a mean age of 53 years, the survey cohort was already experiencing regular exacerbations, a considerable impact on daily functioning and high levels of healthcare utilization. These findings support those of other studies that show that the impact of COPD is not restricted to an elderly population [8, 14, 15]. Indeed, an analysis of data from the European Community Respiratory Health Survey of over 18,000 adults aged 20–44 years concluded that a considerable percentage of the population showed signs of COPD (11.8% GOLD stage 0, 2.5% GOLD stage 1 and 1.1% GOLD stages 2 and 3) .
The incidence of comorbidities reported here is likely associated with the age and smoking characteristics of the population – over half of patients in our survey were current smokers. Comorbidities were common, and were generally similar to those reported by another survey of patients with COPD , the Evaluation of COPD Longitudinally to Identify Predictive Surrogate Endpoints (ECLIPSE) data , and the comorbidities of COPD patients in The Health Improvement Network (THIN) database . However, the rates of comorbidities in our survey were generally lower than those reported by other studies [9, 16, 17]. Furthermore, rates of comorbidities were generally higher in MRC 3, 4, and 5 patients compared with MRC 1 and 2 patients in our survey, contrasting with the ECLIPSE study that reported no relationship between comorbidity prevalence and COPD severity. The younger mean age of our survey population compared with the other studies, and inclusion of patients with chronic bronchitis and/or emphysema in our survey, may explain the differing comorbidity observations.
Treatment history was typical of a COPD population, and showed a relatively positive infiltration of guideline messages and an encouraging level of physical management approaches. The COPD Resource Network Needs Assessment Survey reported both patient and physician confusion about COPD treatment choices, and under-use of pulmonary rehabilitation . In our survey, patients reported using physical and breathing exercises, but low rates of pulmonary rehabilitation, suggesting that better access to this treatment approach is still needed.
Patients generally believed that their COPD was well controlled despite the high rate of exacerbations and resulting need to consult healthcare services, rest and increase their medication. This type of mismatch is not unusual, and has been widely reported in studies of both COPD and asthma patients, suggesting low levels of expectation [6, 10, 18]. For example, the Confronting COPD International Survey, the first large international (EU and US) survey on the burden of COPD, reported that over a third of patients with the most severe breathlessness (too breathless to leave the house) described their condition as mild or moderate, as did 60% of patients characterised as breathless after walking a few minutes on level ground . Similarly, in the COPD Resource Network Needs Assessment Survey, the majority of patients expressed satisfaction with their care despite experiencing significant symptoms and high healthcare utilization .
The MRC breathlessness scale proved a useful self-assessment indicator of COPD severity in our survey, with a consistent association between higher MRC scale (3, 4 and 5) and increased prevalence of exacerbations and symptoms, increased prescribed medication use and greater healthcare utilization. In addition, nearly twice as many MRC 3, 4 and 5 patients reported that their doctor took their condition very seriously compared with MRC 1 and 2 patients.
Patient reporting of COPD exacerbations is a relatively reliable measure of true exacerbation frequency, with a good correlation between patient recall of the number of exacerbations and documented occurrence of exacerbations [19, 20]. Furthermore, the high prevalence of exacerbations reported in our survey is consistent with those in other studies of COPD patient reports [7, 20–22]. For example, in the Perception of Exacerbations of Chronic Obstructive Pulmonary Disease (PERCEIVE) survey, 89% of patients reported at least one episode of ‘flare-up’ of symptoms during the preceding year . Patient-reported exacerbation rates are typically higher than those reported in clinical trials (as very unstable patients are not recruited into clinical trials, and because the patient definition of an exacerbation may not be the same as that used in clinical trials), and suggest that the ‘real-world’ experience of COPD patients is different from that of patients in a research setting. The inclusion of approximately twice as many patients with chronic bronchitis compared with patients with emphysema in our survey may contribute to the relatively high prevalence of exacerbations and relative paucity of comorbidities in our survey.
Our survey cohort reported that recovery from exacerbations could be slow or incomplete, especially for MRC 3, 4 and 5 patients. Again, this supports data from clinical studies that demonstrated incomplete recovery 35 days after exacerbation in approximately a quarter of patients [12, 23]. The high levels of healthcare utilization reported in our survey are also similar to those reported by other studies. In PERCEIVE, 89% of patients who had experienced an exacerbation needed to see their doctor, and 21% required hospital admission . Exacerbations generated a mean (standard deviation) of 5.1 (4.6) visits to the doctor per patient per year .
In a cohort of 128 patients with COPD, earlier treatment of exacerbations was associated with faster recovery (regression coefficient 0.42 days/day delay of treatment; confidence interval, 0.19–0.65; p<0.001), and failure to report exacerbations was associated with an increased risk of emergency hospitalization (Spearman's rank correlation coefficient=0.21, p=0.04) . As over a third of patients in our survey took a ‘wait and see’ approach to exacerbations, there is a clear need for better patient education that stresses the importance of a rapid response to symptoms of an exacerbation.
In our survey, exacerbations impacted everyday activities such as sleeping, walking and the ability to commit to future events. For COPD patients of working age, such as those in our cohort, there are additional concerns. For example, a survey of 2,426 COPD patients aged 45–68 years revealed that nearly one in five patients was forced to retire prematurely because of their condition . In addition, patients expressed concern about their ability to maintain their lifestyle and plan for the future . Patients in our survey expressed similar concerns about their future health, as well as fears of premature death arising from COPD, especially as a result of an exacerbation. Palliative care is an important component in the treatment of COPD patients, particularly those with severe disease , but access remains poor . Current guidelines recommend that clinicians initiate discussions about end-of-life care with appropriate patients [4, 27].