Symptom Experience of Pulmonary Arterial Hypertension Patients

Purpose: To describe symptoms experienced by pulmonary arterial hypertension (PAH) patients and the impact these symptoms have had on their lives.

Method: Qualitative descriptive methodology was chosen incorporating semistructured interviews to investigate the symptom experience of ten patients with PAH.

Results: All patients were diagnosed with WHO Group 1 PAH and 70% were WHO functional Class III. Two overarching themes emerged: holding back and redefining life. Holding back was represented by three subthemes: fear, anticipation of worsening symptoms, and treatment effects. Redefining life was characterized by uncertainty, activity restrictions, and making the best of it.

Conclusion: This study revealed specific concerns related to the symptom experience of PAH patients and how they redefined their lives to accommodate these symptoms. These findings provide a basis for larger, quantitative studies to examine the extent of symptom impact as well as a framework for development of self management interventions to improve the symptom experience and QOL.