Knowledge gaps in patients with COPD and their proxies

Nienke Nakken*, Daisy J. A. Janssen, Esther H. A. van den Bogaart, Jean W. M. Muris, Jan H. Vercoulen, Frank L. Custers, Gerben P. Bootsma, Michiel H. M. Gronenschild, Emiel F. M. Wouters, Martijn A. Spruit

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Background: Although 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.

Methods: In 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).

Results: Patients 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.

Conclusions: Proxies 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.

Original languageEnglish
Article number136
Number of pages9
JournalBMC Pulmonary Medicine
Publication statusPublished - 30 Oct 2017


  • COPD
  • Education
  • Family
  • Informal carer
  • Knowledge
  • Proxy

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