"It's that invisible illness": Patient and clinician perspectives on outcomes in pulmonary arterial hypertension treatment

Catherine L Auriemma; Jasleen Minhas; Randi Blue; Tess Lapatra; Steven M Kawut; Katherine R Courtright

doi:10.1002/pul2.12236

"It's that invisible illness": Patient and clinician perspectives on outcomes in pulmonary arterial hypertension treatment

Pulm Circ. 2023 May 8;13(2):e12236. doi: 10.1002/pul2.12236. eCollection 2023 Apr.

Authors

Catherine L Auriemma^{1

2}, Jasleen Minhas¹, Randi Blue¹, Tess Lapatra¹, Steven M Kawut^{1

3}, Katherine R Courtright^{1

2}

Affiliations

¹ Department of Medicine Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.
² Palliative and Advanced Illness Research (PAIR) Center, Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.
³ Department of Biostatistics, Epidemiology, and Informatics Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.

Abstract

Knowledge of what outcomes are most meaningful to pulmonary arterial hypertension (PAH) stakeholders is limited. In this qualitative study, patients and clinicians endorsed personalized physical activity, symptoms, and psychosocial well-being as key outcomes to assess PAH treatment response, yet few are routinely measured in PAH clinical trials.

Keywords: outcomes; pulmonary hypertension; qualitative research.

Abstract

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