Living with pulmonary artery hypertension: patients' experiences.

BACKGROUND: Research on the outcomes of medical therapy in persons with pulmonary artery hypertension (PAH) has increased as new therapeutic options have emerged. Little investigation has been done on the impact of living with PAH despite inferences that quality of life (QOL) improves. PURPOSE: The purpose of this qualitative study was to describe patient experiences of living with PAH and identify factors that may have an impact on QOL. PARTICIPANTS: Participants (n = 11; 8 women, 3 men) were selected from among 42 adult patients, 40 to 72 years of age, followed in an outpatient setting at a tertiary care hospital. Multiple types of treatment modalities were represented including calcium channel blockers, endothelin-receptor antagonists, prostacyclin analog, and lung transplantation. METHODS: Semistructured interviews allowed participants to describe experiences living with PAH. Interviews were recorded on audiotape and transcribed verbatim. Analysis was conducted in accordance with Colaizzi's 7-step process for analysis of phenomenologic data. RESULTS: Two overarching themes emerged indicating that participants experience uncertainty associated with a variety of aspects of this illness but also learn to cope with this uncertainty and move on with their lives. IMPLICATIONS: Assisting patients to cope with the uncertainty associated with this chronic health problem is essential if patients are to successfully adjust to the demands of the illness and its treatment. Attention to the findings of this study should guide health care professionals in their efforts to improve QOL in this patient population.