IntroductionThe British Lung Foundation (BLF) COPD Patient Passport (www.blf.org.uk/passport) was developed as a resource to help people with chronic obstructive pulmonary disease (COPD) and clinicians to consider the care received and identify essential omissions. We used the online data collected to evaluate the delivery of COPD care in the UK from a patient perspective.MethodsThe patient passport consists of 13 questions relating to key aspects of COPD care including: spirometry confirmation of diagnosis, understanding their diagnosis, support and a written management plan, vaccinations, smoking cessation, physical activity, exercise, eating well, pulmonary rehabilitation, exacerbations, medications and yearly reviews. Data were presented as proportions with an answer corresponding to good care, and plotted over time to identify trends.ResultsAfter removing identifiable duplicates, data from 41 769 entries, completed online between November 2014 and April 2019, remained (table 1). Twenty-four per cent reported getting support to manage their care and a written action plan; 53% could spot the signs of an acute exacerbation; 34% had discussed pulmonary rehabilitation and 41% stated they understood their COPD, and their doctor or nurse had explained where to find information, advice and emotional support. A quarter reported not receiving influenza vaccination and a third of those who smoke were not offered support to quit smoking. Even the strongest areas including spirometry-confirmed diagnosis, and knowing the importance of being active and eating well, achieved only around 80%. Response patterns remained stable or worsened over time.DiscussionResponses to the BLF COPD Patient Passport identify substantial gaps in patients’ experience of care, which did not appear to improve during the 5 years covered. These data provide a unique yet commonly overlooked perspective on care quality, and highlight that new approaches will be needed to meet the ambitions to improve respiratory care set out in the NHS Long Term Plan.

The online British Lung Foundation Breath Test provides an opportunity to study the relationship between breathlessness, common sociobehavioural risk factors and interaction with healthcare. We analysed data from 356 799 responders: 71% were ≥50 years old and 18% were smokers. 20% reported limiting breathlessness (Medical Research Council breathlessness score ≥3), and the majority of these (85%) worried about their breathing; of these, 29% had not sought medical advice. Of those who had, 58% reported that the advice received had not helped their breathlessness. Limiting breathlessness was associated with being older, physically inactive, smoking and a higher body mass index. These data suggest a considerable unmet need associated with breathlessness as well as possibilities for intervention.

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