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Patients with end-stage COPD did not ask for help because they felt normal and did not realise the situation could be improved

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Why do patients with end-stage chronic obstructive pulmonary disease (COPD) not actively ask for help?


Qualitative study with semistructured interviews.


Outpatient clinics in 4 hospitals and 1 specialist centre in the Netherlands.


A purposeful sample of 11 patients 61–83 years of age (73% men) who had Global Initiative for Chronic Obstructive Lung Disease stage IV COPD were identified from a sample of 82 patients from a quality of life study.


In-depth semistructured interviews were conducted, each lasting 1.5–2.5 hours. The first question asked was “Can you describe a normal day?” Other topics included activities of daily living, medical and informal care, social support, stigmatisation, anxiety, and the future. Interviews were audiotaped, transcribed, and analysed using an iterative process.


Patients with end-stage COPD had both physical and social limitations. Breathlessness and anxiety were the most common physical limitations. Patients were afraid of suffocating because of severe breathlessness. As a result of physical limitations, patients became less mobile. They did not leave their houses in …

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  • Source of funding: Netherlands Asthma Foundation.