Abstract
Rationale:
Exacerbations of chronic obstructive pulmonary disease (COPD) are an important health outcome with significant relationship to quality of life, but little is known about patient perspectives of COPD & its exacerbations.
Methods:
We examined patient attitudes toward, & experiences of their disease and its exacerbations. A convenience sample of 14 patients from Gateshead, Tyne & Wear, UK, who had seen a health care professional (HCP) regarding their COPD in the last 6 weeks were recruited for in-depth, tape recorded interviews & spirometry. 11 met the criteria and had interviews recorded. Data were analysed for notable themes and their patterns.
Results:
The results found a high level of variation (not correlated with lung function) with few shared patterns of experience. The results listed here then seek to describe the patients' experiences and their many varied nature.
- Breathing problems might have begun ‘as a kid,’ during one's 40s or one's 60s.
- For one participant life just now was like having been let out of prison (since commencing ‘Slo-Phyllin’), but another sits crying and wondering if ‘is it worth bothering?’
- Social activities could constitute 4 trips to the day centre a week or not getting out at all.
- One participant maintains a social function — doing the school run, whilst another ‘just sits.’
- The disease can be ‘alright one day, then all around the next,’ vary on a week to week basis, or not at all.
- In terms of day to day symptoms, the biggest barrier caused by the disease might not be breathlessness, it could be tiredness or cough -the struggle to expectorate causing the breathlessness or there might be no cough. It could be a mainly nocturnal problem, no bother at all at night, or worst in the mornings.
- This can be a disease with no pain, or one where the struggle to breathe makes you ache.
- The dry heat of foreign climes could be sought after, or the dense summer air feared.
- One man ‘loses his breath’ in the cold Tyneside air, but not in bitterly cold, snowy Hamburg.
- Descriptions of how exacerbations start showed that there could be a sudden, frightening inability to breathe, simply a change in phlegm colour, or something identified during a check up for something else.
- Treatment could mean being rushed into hospital, being given a script, or no treatment at all.
- Exacerbations might be resolved within days of commencing medication, or unresolved 6 months later.
- Oral steroids could be wonder drugs, ‘I felt great,’ or be completely ineffective.
Conclusions:
The above may come as no surprise, but how does it influence practice? A patient centred approach is advocated for doctor-patient consultations today. The study described here is an example as to importance of such an approach. It paints a picture of a many varied disease which poses the question, ‘Does this fit with HCP perceptions of COPD?’
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Parayil, R. Complexity in patient experience of COPD: a qualitative study. Prim Care Respir J 12, 66 (2003). https://doi.org/10.1038/pcrj.2003.32
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DOI: https://doi.org/10.1038/pcrj.2003.32