OBJECTIVES: To develop targeted educational tools based on the results of an online survey in patients with chronic obstructive pulmonary disease (COPD).

METHODS: This project had two phases: (1) to gather patients’ insights and educational needs, an online qualitative survey was completed by 305 patients in 4 countries (Austria, Canada, Romania, Spain) between Oct-Nov 2020, and (2) development of educational tools for assisting healthcare professionals based on patients’ reports.

RESULTS: In total, 80 patients from Romania participated in this project. Main patient characteristics: 46 (58%) males, 59 (74%) retired, 50 (63%) over 60 years old. Exacerbation insights: Half of COPD patients never heard of the term ‘exacerbations’, but were familiar with ‘worsening/flare-ups’, which were associated with disease progression and negative emotions. They did not differentiate exacerbations by severity, and most could not recognize or self-treat an exacerbation. Most patients had little information on COPD and were concerned by the need to be hospitalized during an exacerbation and require oxygen therapy during disease evolution. A few patients were aware of means to prevent exacerbations (quit smoking, avoid exertion/polluted environments). Four profiles emerged: the optimistic (good support system, educated and informed, good adherence, in control of COPD); the resigned (lower educational level, no knowledge on disease, low adherence, ignores the disease); the overwhelmed (poor support system, informed, advanced stage, overwhelmed by disease/social stigma, low trust in treatment/physicians); the laid back (young, early stage, active, good support system, informed, confident). Educational tools derived: a visual aid based on COPD outcomes (disease map) to help educate and engage patients in their disease management and an exacerbation lexicon including the real-life stories of patients participating in the survey.

CONCLUSIONS: Recognition of exacerbation and prompt action seem challenging for COPD patients. Educational tools based on their needs may be useful in improving disease management.