Abstract
BackgroundAlthough proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies.MethodsIn this cross-sectional study, we included stable patients with moderate to very severe COPD and their resident proxies (n = 194 couples). Thirty-four statements about generic health and COPD-related topics were assessed in patients and proxies separately. Statements could be answered by ‘true’, ‘false’, or ‘do not know’. This study is approved by the Medical Research Ethics Committees United (MEC-U), the Netherlands (NL42721.060.12/M12–1280).ResultsPatients answered on average 17% of the statements incorrect, and 19% with ‘do not know’. The same figure (19%) for the incorrect and unknown statements was shown by proxies. Patients who attended pulmonary rehabilitation previously answered more statements correct (about three) compared to patients who did not attend pulmonary rehabilitation. More correct answers were reported by: younger patients, patients with a higher level of education, patients who previously participated in pulmonary rehabilitation, patients with better cognitive functioning, and patients with a COPD diagnosis longer ago.ConclusionsProxies of patients with COPD as well as patients themselves answer about two third of 34 knowledge statements about COPD correct. So, both patients and proxies seem to have an incomplete knowledge about COPD and general health. Therefore, education about general health and COPD should be offered to all subgroups of patients with COPD and their proxies.Trial registrationThis study is registered in the Dutch Trial Register (NTR3941). Registered 19 April 2013.
Highlights
Proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown
Worldwide, 65 million people have moderate to very severe chronic obstructive pulmonary disease (COPD). [1] COPD is associated with high burden on society, both in terms of wellbeing of patients and their family as well as economic
Patients were eligible if they had moderate to very severe COPD (Global initiative for chronic Obstructive Lung F statement is false (Disease) (GOLD) grade II to IV); [2] no exacerbation of COPD or hospitalisation within 4 weeks preceding enrolment; and if they had a resident proxy
Summary
Proxies of patients with chronic obstructive pulmonary disease (COPD) need health-related knowledge to support patients in managing their disease, their current level of knowledge remains unknown. We aimed to compare health-related knowledge (generic and COPD-related knowledge) between patients with COPD and their resident proxies. 65 million people have moderate to very severe chronic obstructive pulmonary disease (COPD). [10] they need health-related and COPD-specific knowledge. In caregivers of patients with (severe) mental illness, education proved to increase knowledge, reduce anxiety, [12] and reduce subjective burden. [14] the current level of knowledge in resident proxies of patients with COPD remains unknown. The current study aimed to compare healthrelated knowledge (including COPD-related knowledge) between patients with COPD and their resident proxies. A priori, we hypothesized that both patients and proxies have an incomplete knowledge about COPD
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