Exploring the patient perspective in pulmonary hypertension

Area of Science:

• Cardiology
• Public Health
• Patient Advocacy

Background:

• Pulmonary hypertension (PH) was recognized globally in 1973, leading to decades of therapeutic advancements.
• Despite improved treatments, PH significantly impacts patients' wellbeing and mental health.
• There's a critical need to understand global patient challenges in care access and support.

Purpose of the Study:

• To enhance understanding of global patient challenges in pulmonary hypertension (PH) care access and support.
• To analyze the benefits of incorporating patient-reported outcomes (PROs) into PH diagnosis and treatment.
• To explore the impact of global threats on PH patients and propose mitigation strategies.

Main Methods:

• Global surveys of patient and healthcare provider experiences and challenges regarding care access.
• Analysis of the current state and potential enhancements for PH patient associations worldwide.
• Review of patient-reported outcome measures for assessing health-related quality of life in PH.

Main Results:

• Identified significant global disparities in PH care access and patient support.
• Highlighted the importance of patient associations in providing multidimensional support.
• Presented relevant PRO measures and suggested their integration into clinical practice and research.

Conclusions:

• Addressing global challenges in PH care access and patient support is crucial.
• Integrating PROs can improve PH diagnosis, treatment, and patient-centered care.
• Proactive planning is needed to mitigate the impact of global threats on PH patients.