Impact of patients’ attitudes and dynamics in needs and life experiences during their journey in COPD: an ethnographic study

Abstract

Objectives: Despite its importance in determining coping behaviors, few studies have assessed the reality of chronic obstructive pulmonary disease (COPD) and its management perceived by patients. This study aimed at an in-depth understanding of this reality to identify COPD patients’ attitudes, COPD-shaped experiences, and overlooked needs during their journey. Methods: Qualitative ethnographic study including 28 adult patients with moderate and severe COPD and 20 healthcare professionals. Study phases were (1) in-depth individual and (2) ethnographic interviews (qualitative), and (3) online questionnaires (quantitative), including 400 patients. Qualitative data were collected using audio, video, and observation notes. Three ethnographers analyzed data using a template covering different themes: attitudes of COPD patients, COPD-shaped experiences, and overlooked needs. Results: We identified four attitudinal profiles of COPD patients: ‘active controller,’ ‘naïve minimizer,’ ‘defeated sufferer,’ and ‘struggling bon vivant,’ which were validated in 400 COPD patients, as well as five stages in the COPD patient journey and overlookedneeds. The ‘active controller’ profile was associated with slower disease progression compared with the ‘defeated sufferer’ and ‘struggling bon vivant’ profiles. Conclusion: Four attitudinal profiles were distinguished and validated in a large sample of COPD patients. Patients’ attitudes impacted in COPD-associated experiences, limitations, and unmet needs, which differed among profiles.