Living with pulmonary hypertension: unique insights from an international ethnographic study Martha Kingman, 1 Barbara Hinzmann, 2 Oliver Sweet, 3 Jean-Luc Vachiéry 4 To cite: Kingman M, Hinzmann B, Sweet O, et al. Living with pulmonary hypertension: unique insights from an international ethnographic study. BMJ Open 2014;4:e004735. doi:10.1136/bmjopen-2013- 004735 ▸ Prepublication history for this paper is available online. To view these files please visit the journal online (http://dx.doi.org/10.1136/ bmjopen-2013-004735). Received 20 December 2013 Revised 31 March 2014 Accepted 17 April 2014 1 Pulmonary Hypertension Program, UT Southwestern Medical Center, Dallas, Texas, USA 2 Department of Global Market Research, Market Research Cardiology, Bayer HealthCare Pharmaceuticals, Berlin, Germany 3 Ethnography Centre of Excellence, Ipsos MORI, London, UK 4 Département de Cardiologie, Cliniques Universitaires de Bruxelles, Hôpital Erasme, Brussels, Belgium Correspondence to Dr Martha Kingman, Martha.Kingman@ UTSouthwestern.edu ABSTRACT 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. INTRODUCTION Pulmonary hypertension (PH) is a group of heterogeneous diseases, defined by an increase in mean pulmonary artery pressure ≥25 mm Hg measured by right heart catheter- isation. 1 Pulmonary arterial hypertension (PAH), a subtype of PH, is a chronic disease, characterised by vasoconstriction and vascular proliferation of the small pulmonary arteries, eventually leading to right heart failure and death. 1 Despite the availability of several spe- cific therapies, PAH is severely disabling and carries a poor prognosis. 2 Chronic thrombo- embolic PH (CTEPH) is another subtype of PH, which develops from the obstruction of pulmonary artery branches following chronic pulmonary thrombosis, leading to the forma- tion of fibrosis and remodelling of pulmonary blood vessels. 1 Pulmonary endarterectomy is the only curative therapy for CTEPH; however, approximately 35% of patients are not eligible for this surgery and such patients have a poor prognosis, similar to those with PAH. 3–5 The physically and psychologically disab- ling natures of PAH and CTEPH can severely impact patients’ relationships with family and friends, their ability to work and exercise, and their financial security. 6 Consequently, quality of life (QoL) assessments are often included as secondary endpoints in clinical studies to investigate the effectiveness of PH medications. A variety of tools have been developed, including generic measurements Strengths and limitations of this study ▪ This is the first ethnographic study to investigate the experiences of patients living with pulmonary hypertension and uncovers a number of findings that would not typically be revealed by other qualitative approaches. ▪ The study included an international sample of patients with an array of demographic features in order to provide a wide range of perspectives on living with the disease and to identify trends. ▪ A larger study including more patients across additional countries is warranted to allow sub- analyses to be undertaken according to demo- graphic variables, country and disease type. Kingman M, Hinzmann B, Sweet O, et al. BMJ Open 2014;4:e004735. doi:10.1136/bmjopen-2013-004735 1 Open Access Research group.bmj.com on March 25, 2017 - Published by http://bmjopen.bmj.com/ Downloaded from