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.