Living with pulmonary hypertension: unique insights from an international ethnographic study

OBJECTIVES: To better understand the patient's perspective of pulmonary hypertension (PH), including the impact of living with PH, disease management and treatment. DESIGN: This qualitative ethnographic study collected observational video footage, supplemented by field notes and patient diaries to assess the impact of PH on the patient's life. SETTING: Patients were observed and filmed in their home for up to 6 h, capturing the environment, interactions and activities of everyday life. PARTICIPANTS: Patients with pulmonary arterial hypertension (PAH) or chronic thromboembolic PH who were receiving PAH-specific medication were recruited through healthcare professionals (HCPs) and patient associations in seven countries across four continents. Sampling was purposive and subgroup analysis was not intended. RESULTS: Overall, 39 patients with PH were enrolled. Many patients had a poor understanding of PH and found their ‘invisible’ disease difficult to explain to others. An important finding was the secrecy surrounding PH. Feelings of insecurity and isolation were regularly reported, and many patients admitted to hiding their symptoms. The marked improvement in symptoms after therapy initiation made assessment of disease progression more difficult as patients compared their quality of life (QoL) against pretreatment levels. Extensive planning and adherence to daily routines were required in patients’ everyday life. CONCLUSIONS: Ethnography was used for the first time, in several countries, to evaluate the patient's perception of living with PH. This approach revealed key findings that would not typically be uncovered using other qualitative techniques, including the secrecy surrounding PH, the difficulties in describing the disease and the challenges in assessing disease progression. A more tailored dissemination of information from HCPs and development of a simple and understandable PH definition may be beneficial in alleviating the secrecy reported by patients. A greater appreciation of how patients perceive their disease and QoL has the potential to improve PH management.