To obtain patient-generated data relating to the management of their chronic obstructive pulmonary disease (COPD) in Primary Care before hospitalisation with exacerbation.

Previous audits of COPD have shown high rates of hospital admission and readmission. There is significant interest in understanding the reasons so that useful preventative strategies may be developed. As part of the 2008 UK COPD audit, which comprised 9716 cases of COPD admission across 97% of acute units, we obtained a sample of patient-generated data to assess understanding of COPD, use of healthcare resources, access to care and self-management in Primary Care prior to hospitalisation with exacerbation. We anticipated the data would provide useful insight for directing improvement strategies.

A paper-based, anonymised survey was completed by patients identified as having exacerbation by participating hospital teams. Response rate was an estimated 46%.

Understanding and awareness of COPD was very variable. Patients noticed symptoms of COPD exacerbation, particularly change in sputum, for some time prior to hospitalisation but tended not to react promptly to these changes. A minority had self-care plans, many bypassed Primary Care Services and there was variable access to a named health professional or advice. Patients using home oxygen and nebulisers were at particular risk of admission.

We conclude these sick patients use a lot of resources and the data suggest a need to support and educate them in the proactive management of exacerbation. There needs to be better ‘exacerbation planning’ so patients know how to recognise and treat flare-up but also whom to contact in the event of decline. Targetted support should be considered for the most vulnerable, particularly those using home oxygen and nebulisers, who have very high rates of hospitalisation.