This large online sample of UK patients with COPD reveals significant gaps in the delivery of important aspects of patient care and patient understanding of COPD and thus their ability to self-manage. Worryingly, there was no apparent improvement over time, suggesting a need for systemic change.
Significance of findings
The significance of these findings relates both to the impact of omissions in care and to the need for efforts to understand why the system is failing to deliver them and what needs to change in order to improve matters. Self-management, particularly including an exacerbation action plan, improves quality of life and reduces hospital admissions in COPD.1 The persistently low positive response rate to self-management items, including having a written plan and being able to recognise and act on symptoms of acute exacerbations is concerning as this may translate into preventable and distressing acute hospital admissions.
Pulmonary rehabilitation is one of the highest value COPD interventions.10 Referral rates to and delivery of PR remain inadequate, both according to national audit data3 4 and in the present patient survey. Since PR is a highly effective venue for delivering educational and other multidisciplinary components of COPD care, addressing this would likely be mutually reinforcing. The gaps in care here may also help explain the findings from the BLF Breath Test, that among breathless people (Medical Reserach Council (MRC) dyspnoea score >3), 58% of those who had sought medical advice reported that this had not helped with their breathlessness.11 A system failure to provide optimal COPD care also contributes to poor access to more specialised treatments such as lung volume reduction procedures.12 13
Particularly weak areas include understanding of COPD and where to find information; having support to manage COPD and a written plan regarding COPD management; discussion of PR; receiving advice about ongoing exercise and nutrition; identifying and managing exacerbations and having yearly review of their disease and management, with time to ask questions. The NICE guidance2 emphasises the need for comprehensive written information about COPD, including in self-management plans (eg, BLF materials at blf.org.uk/COPD).
Some areas are slightly better, but still arguably inadequate, including immunisations; smoking cessation (when relevant) and the importance of eating well and staying active. The best areas relate to knowledge of medications and having a COPD diagnosis based on spirometry. These topics have only around 80% responding positively to these questions.
Our findings mirror data from the National Asthma and Chronic Obstructive Pulmonary Disease Audit Programme,4 from the quality outcomes framework3 and from the clinical practice research database14 indicating that key high-value items of care10 are not being delivered systematically to all patients with COPD, particularly smoking cessation, influenza vaccination and PR. Similar results in audit datasets support the validity of the BLF Patient Passport. In particular, Quality Outcomes Framework (QOF) data report 88% of people with a diagnosis of COPD having had spirometric confirmation of the diagnosis, compared with 81% in the present data.4 QOF data on influenza vaccination are also similar. According to QOF, 88.7% were reviewed by a health professional in the last 12 months, compared with 70% reported this in our data.
Why has COPD care not improved? The period covered here coincides with the UK Government’s choice to pursue austerity economic policies. These have been shown to impact on health in two ways.15 The first is via a reduction in support to address or mitigate the social and corporate determinants of health which worsens health and increases the burden on the healthcare system. The burden of austerity falls more heavily on poorer people and COPD is more common in people in lower income deciles. The second mechanism is a direct healthcare effect where resources to deliver healthcare are limited, in particular ‘time to care’. Particularly concerning is the downward trends observed in the responses to questions which represent the more time intensive aspects of care provision. Although it is possible to improve aspects of COPD care with appropriate targeting and prioritisation,16–18 COPD and respiratory disease in general have not been afforded the same degree of priority as other aspects of health such as cardiovascular disease. We speculate that the absence of prioritisation and targets could mean that clinicians’ finite attention has inevitably been focused elsewhere.
The inclusion of respiratory disease, finally, as a priority in the NHS England Long Term Plan may mark a turning point, helping to translate the burden of need in respiratory disease into effective policy.19 The NHS RightCare Pathways ‘aim to provide a set of resources to support systems to concentrate their improvement efforts on where there is greatest opportunity to address variation and improve population health’.20 These are focused on (i) pulmonary rehabilitation: optimising patient uptake and service provision, (ii) medicines optimisation for inhaler use: staff training programmes for patient inhaler use and (iii) COPD: case finding, accurate and earlier diagnosis.
Methodological issues
This study has some potential limitations. Demographics and disease severity were not collected. However, as the main method of signposting to this resource is by respiratory specialist nurses, respiratory physicians and respiratory support groups such as BLF BreatheEasy, the results likely represent the breadth of demographics and disease severity seen across the NHS. It is unlikely that many people without a formal diagnosis of COPD completed the questions, both because of the way that the survey was signposted and because there is no obvious motivation for large numbers of people without COPD to do so.
Some degree of selection bias is possible as completion requires computer access and literacy. As not all respondents gave their postcode, some duplicate records may remain. Similarly, it is possible that some people completed the questions on more than one occasion. However, given that the tendency to complete the questions multiple times is unlikely to be systematically linked to positive or negative responses, the impact of such limitations are not felt to excessively compromise conclusions.
Clearly, one system driver for better care would be increasing requests by informed patients to receive items of care that they are currently missing out on. Although providing information about patient experience, these data do not allow us to address the effectiveness of the COPD Patient Passport in its proposed role as a tool to inform and motivate patients to overcome barriers to receiving better care.21