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Living with Pulmonary Hypertension (PH): Unique Insights from an International Ethnographic Study

Martha Kingman

B. Hinzmann

O. Sweet

J-L Vachiery


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Conference: 2012 International PHA Conference and Scientific Sessions

Release Date: 06.22.2012

Presentation Type: Abstracts

Kingman M1, Hinzmann B2, Sweet O3, Vachiery J-L4

1. UT Southwestern Medical Center, Dallas, TX, USA
2. Bayer HealthCare Pharmaceuticals, Berlin, Germany
3. Ipsos MORI, London, UK
4. Hôpital Erasme, Brussels, Belgium

BACKGROUNDDespite the widespread use of quality of life (QoL) assessments in PH research, large gaps remain in our awareness of how patients perceive their disease. This study utilized ethnography, a unique qualitative research methodology based on participant-led observations, to acquire a better understanding of the patient’s perspective of QoL, disease management, and the patient–healthcare professional (HCP) relationship in PH.

METHODSPatients were recruited through HCPs and patient associations. They were included if they were aged ≥18 years, had been diagnosed with pulmonary arterial hypertension (PAH) or chronic thromboembolic PH (CTEPH) for ≥6 months, and were receiving PAH-specific medication. The study used interviews and observations to assess real-life patterns of behavior. Patients completed diaries before being interviewed to gauge the emotional impact of living with PH. The researcher then observed the patient in their home for up to 6 hours, capturing the environment, interactions, and activities of everyday life. A total of 140 hours of footage were independently reviewed and analyzed by several ethnographers within the research team. The data were cut thematically and analyzed for behavioral themes including: daily routines, impact on lifestyle, future outlook, information and support sources, medication practicalities, compliance, and emotional attachment to therapy. These observations were then compared with stated patient responses.

RESULTSIn total, 39 patients with PH (PAH=34, CTEPH=5; NYHA FC I=2, II=14, III=17, IV=6; 29 females; age range 19–91 years) were enrolled from 7 countries across 4 continents. In addition to the severe limitations imposed by the disease on patients’ lifestyles, a striking outcome of the study was the reported secrecy surrounding PH. Many patients had a poor understanding of PH and found their ‘invisible’ disease difficult to explain to others. Feelings of insecurity, isolation, and depression were regularly reported, with many patients admitting to hiding their symptoms. The majority recalled the pre-diagnosis phase of PH as being defined by feelings of anxiety and a fear of being judged as lazy or unfit. Following diagnosis, access to medication played an integral role in their lives, providing symptomatic relief and improving QoL. Thus, compliance with, and emotional attachment to, medication were observed to be high. The marked improvement in symptoms after initiation of therapy made assessment of disease progression more difficult as patients tended to compare their QoL against a pre-treatment level and were less aware of ongoing subtle changes. In terms of disease coping strategies, patients fell into 2 categories: solution-seekers who developed tactics to cope with PH on a daily basis; or disease-dominated who had a greater dependency on caregivers and a more passive attitude toward PH. Regardless of the strategy adopted, patients stated that extensive planning and adherence to daily routines were required in everyday life. Many patients were unaware of, and reluctant to discuss, their prognosis. The enforced dependency on caregivers that followed diagnosis was an aspect of PH that patients were unprepared for, and the majority appreciated personal contact with expert PH HCPs.

CONCLUSIONSThis study provides a unique real-life insight into PH from the patient’s perspective, uncovering a number of findings that would not typically be revealed by other qualitative approaches. It highlights the secrecy surrounding PH, the difficulties in describing the disease, and the challenges in assessing disease progression. A more tailored dissemination of information and a simple and understandable definition of PH may prove beneficial to patients. A greater appreciation by HCPs and caregivers of how patients perceive their disease and their QoL has the potential to improve PH management.