Patients', relatives', and practitioners' views of pulmonary arterial hypertension: A qualitative study

Introduction: To study practitioners', patients' with PAH, and relatives' views regarding pulmonary arterial hypertension (PAH) and identify potential improvements in medical care strategies.

Methods: A qualitative study based on semi-structured interviews involving 16 patients, 4 relatives, and 9 practitioners.

Results: Patients with PAH, their relatives, and physicians who treat persons with PAH had divergent perspectives on PAH. The discrepancies identified concerned their perceptions of the illness and its impact on patients' with PAH daily lives. Patients with PAH had a broader view, including social, identity, financial, and functional dimensions of PAH's impact on their lives, whereas practitioners were more focused on functional aspects. The study also pointed out divergent approaches among physicians to assessing patients' New York Heart Association functional class. The expectations of patients with PAH, relatives, and physicians also differed. Patients with PAH expected improvement in PAH diagnosis and better coordination between primary care physicians and PAH medical centers. They also valued reducing side effects, less restrictive medications, and greater consideration of their views in the medical decision making process. Physicians' expectations focused more on identifying and validating therapeutic strategies.

Conclusion: Our results suggest several potential improvements in patient management, especially in order to better tailor treatment to patients' needs and to achieve a more uniform approach to the PAH functional impact assessment process. The findings may also be useful in enhancing therapeutic education for patients and their relatives, and in enabling practitioners to better interpret dyspnea in patients with PAH. Finally, this qualitative database will help in developing patient-reported outcome measures with better content validity. It lays the groundwork for developing new instruments to investigate the impact of PAH on patients' daily lives in terms of symptom assessment and functional impact.