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

Abstract

ObjectivesTo better understand the patient's perspective of pulmonary hypertension (PH), including the impact of living with PH, disease management and treatment.DesignThis 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.SettingPatients were observed and filmed in their home for up to 6 h, capturing the environment, interactions and activities of everyday life.ParticipantsPatients 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.ResultsOverall, 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.ConclusionsEthnography 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.

Adherence and medication belief in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension: A nationwide population‐based cohort survey

“…PAH and CTEPH is commonly diagnosed late in the disease progress and symptoms of dyspnoea and fatigue has often been present for a while. Thus, a patient will likely remember how he or she felt before start of treatment and this can help enhance the patients adherence to medication intake . This is also supported by the present study where a longer time since diagnosis was related to lower treatment adherence.…”

Prevalence of Anxiety and Depression in Pulmonary Hypertension and Changes during Therapy

“…Our data support a transient improvement of mental disorders by modern PH treatment along with improvements in functional class and HRQoL [29,30,31,32]. In an ethnographic study by Kingman et al published in 2014 [33], PH patients were divided into solution seekers and disease-dominated. Comparing these two strategies shows that a patient can better cope if he is a solution seeker.…”

Information, social support and coping in patients with pulmonary arterial hypertension or chronic thromboembolic pulmonary hypertension—A nationwide population-based study

“…Patients with chronic diseases often have changing and different needs for information as the illness progresses and treatment strategies change [12]. The patient receive verbal and written information from their specialist teams [10,13] as well as social media-based information from individual patients and patient organizations [13][14][15]. The healthcare professionals are commissioned to provide adequate information and timely support that is adapted to health status, needs and preferences [5].…”