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. 2023 Jul;78(7):721-725.
doi: 10.1136/thorax-2022-219490. Epub 2023 May 4.

Patients' perceptions on clinical trials outcomes in pulmonary arterial hypertension therapy

Vicky Mai  1   2 , Camille Gosselin  1   2 , Élodie Tremblay  1   2 , Gabrielle Rompré  1   2 , Annie Christine Lajoie  1   2 , Jason Weatherald  3   4 , Jean-Christophe Lega  5   6   7 , Sébastien Bonnet  1   2   8 , Steeve Provencher  9   2   8
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Patients' perceptions on clinical trials outcomes in pulmonary arterial hypertension therapy

Vicky Mai et al. Thorax. 2023 Jul.

Abstract

The value placed by patients and their caregivers on the components of composite outcomes in pulmonary arterial hypertension (PAH) remains unknown. We surveyed the importance of these outcomes from a patients' and caregivers' perspective, with participants (n=335, including 257 patients with PAH) rating individual components defining clinical worsening in PAH trials as of critical, major, mild-to-moderate or minor importance. Most outcomes were considered of major or mild-to-moderate importance to patients. Death was the only outcome considered of critical importance. Perceptions of clinical outcomes varied between patients and caregivers. Integrating patients' perception in the elaboration of clinical trials is essential.

Keywords: Clinical Epidemiology; Primary Pulmonary Hypertension.

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Conflict of interest statement

Competing interests: JW reports speaker’s fees from Actelion, Janssen and Bayer; grants from Ac-telion, Janssen and Merck; and travel support from Janssen and Actelion. SB reports speaker’s fees from Actelion, Janssen and Morphic; and grants from Janssen and Morphic. SP reports grants from Janssen, grants from AstraZeneca, grants from Resverlogix, outside the submitted work and speaker’s fees from Janssen. The other authors report no conflicts.

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