Abstract

Background Chronic obstructive pulmonary disease (COPD) accounts for a major burden on both individuals with the condition, and the NHS. One in eight emergency admissions are due to COPD and one in three COPD patients are readmitted within 28 days of a hospital admission for an exacerbation. Effective self-management of COPD, including the early recognition and treatment of exacerbations, has the potential to improve outcomes such as patient quality of life and to reduce hospital admissions. Yet there is still a lack of consensus on a definition for an exacerbation of COPD and the patient perspective is often neglected in current definitions of these exacerbations. We still have little knowledge of how patients identify and manage exacerbations. Therefore the study presented here aimed to identify, using a qualitative approach, how patients recognise exacerbations and manage these at home. Methods Patients were recruited as part of a clinical trial. A sub-sample of patients was invited to take part in an embedded qualitative interview-based study. The aim of this qualitative study was to explore patients’ current understanding and experience of managing both their COPD and exacerbations at home. Data were collected through in-depth individual interviews, which were carried out in patients’ homes. Interviews were audio-recorded, transcribed and analysed using a grounded theory approach. Results Forty-four patients (17 women, 27 men; age range 55–85 years), with moderate to very severe COPD, were recruited to the interview study. Patients identified exacerbations on the basis of measurable, ‘visible’ symptoms, such as cough and sputum and ‘invisible’ symptoms, such as chest sensations and bodily knowledge. Most patients seemed to use a combination of these approaches when identifying exacerbations, depending on the symptoms that had most impact on their well-being. Patients used additional self-management strategies during an exacerbation, such as self-medication (antibiotics and steroids) and monitored their recovery. Contact with health care professionals usually occurred at crisis point when patients felt no longer able to manage themselves. Conclusion Patients utilise both experiential, instinctive and objective, and medical knowledge in identifying and managing exacerbations of COPD. It seems important that this ‘expert patient’ knowledge is acknowledged by health care professionals and integrated into patients’ care plans to facilitate early recognition and treatment of exacerbations.

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