Living with chronic obstructive pulmonary disease: a survey of patients' knowledge and attitudes.

INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is a common respiratory condition and the fourth leading cause of death in Canada. However, little is known about the impact of COPD on the lives and attitudes of individuals living with this condition. The purpose of this study was to determine whether Canadians with COPD are properly educated and supported, and to recommend solutions to any care gaps identified.
METHODS: A total of 389 Canadians were surveyed who were 40 years of age and older, physician diagnosed with COPD, and current or former smokers. The telephone survey contained 68 items and took 35 min to complete. COPD severity was classified according to symptom severity using the Medical Research Council (MRC) score.
RESULTS: Respondents tended to overestimate their disease severity and reported substantial symptom burden and psychosocial impact of living with COPD. Most individuals claimed to be well informed about COPD; however, their knowledge was poor in several domains including the causes of COPD, the consequences of inadequate therapy and the management of exacerbations. Family physicians were the main health care providers. A minority of respondents had seen a lung health educator. Only 34% had ever received a written action plan and only 33% had been told how to prevent an exacerbation.
CONCLUSIONS: The symptom burden and psychosocial impact of living with COPD is substantial. There are significant gaps in patients' knowledge about the management of COPD and little contact with lung health educators. Increased use of COPD-specific, self-management education programs may help rectify these care gaps.