Team PHenomenal Hope, a nonprofit advocacy organization, has published a research paper in Pulmonary Circulation titled “Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals.” The study illuminates the challenges faced by pulmonary hypertension patients and caregivers.
WHEATON, Ill., Dec. 19, 2023 /PRNewswire-PRWeb/ — Team PHenomenal Hope, a national nonprofit advocacy organization, is proud to announce the publication of research into the burden that pulmonary hypertension places on patients and their caregivers.
The paper, entitled “Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals,” has been published in the journal Pulmonary Circulation. In it, patients with pulmonary hypertension in the US describe the physical and emotional impact of their condition and its effects on their quality of life. The paper also describes how a diagnosis of pulmonary hypertension may be missed because of physician biases, misdiagnosis, and patients not being listened to or believed. Patients report feeling the need to advocate for their own care, as primary and specialist physicians may lack relevant knowledge or experience. Furthermore, interactions with insurance companies can be challenging.
The paper includes a discussion of resources available to patients, such as Team PHenomenal Hope’s programs, and it ends by setting out what patients feel are their main goals for the future of pulmonary hypertension treatment. These include increased awareness of pulmonary hypertension among healthcare professionals; patient empowerment; holistic care, including mental health support; financial support; and more clinical research for pulmonary hypertension. The open-access paper is freely available to read on the Pulmonary Circulation website: https://onlinelibrary.wiley.com/doi/full/10.1002/pul2.12247.
To learn more about the research, visit https://www.teamphenomenalhope.org/ph-patient-perspective/, where you can watch a video featuring some of the authors of the paper talking about their experiences of living with pulmonary hypertension.
About Team PHenomenal Hope
Team PHenomenal Hope’s mission is to fund medical research into improved treatments or a cure for those who suffer from pulmonary hypertension and to implement programs and services that remove patients from isolation, build community, and provide hope. To learn more about Team PHenomenal Hope, visit https://www.teamphenomenalhope.org.
Development of the manuscript and video was funded by Bayer HealthCare Pharmaceuticals, Inc., Whippany, New Jersey, USA. Medical writing support for the manuscript and video was provided by Adelphi Communications Limited, Macclesfield, UK, supported by Bayer HealthCare Pharmaceuticals, Inc., Whippany, New Jersey, USA, in line with Good Publication Practice 2022 guidelines.
Media Contact
Katie Werner, Team PHenomenal Hope, 877-646-4673, [email protected], teamph.org
SOURCE Team PHenomenal Hope
