Information Sources in Pulmonary Hypertension

Overview

Pulmonary hypertension is a serious disease that affects patients' health, daily life, and emotional well-being. Many patients and their caregivers actively look for information to better understand the condition and its treatment. However, the quality of information found in different sources, such as the internet, social media, health professionals, and patient groups, can vary. This study will use a short questionnaire to learn where patients and caregivers search for information, what topics they look for, how satisfied they are with what they find, and which sources they trust most. The results will help improve communication strategies, educational materials, and support programs for people living with pulmonary hypertension and their families.

Pulmonary hypertension (PH) is a chronic and progressive disease often diagnosed late, which forces patients and caregivers to actively seek information to understand and manage the condition. The complexity of PH, combined with its physical, emotional, and social impact, makes access to reliable health information essential. This cross-sectional observational study will apply a structured, self-administered questionnaire to approximately 200 participants (100 patients with confirmed PH and 100 informal caregivers). The questionnaire covers demographic and clinical characteristics, information sources used, expectations and satisfaction, most frequently searched topics, experiences with conflicting information, and preferred communication channels. The goal is to describe patterns of health information seeking in this population and identify opportunities to improve communication, educational resources, and patient-caregiver support. Findings are expected to contribute to the development of more effective health communication strategies and to guide health professionals in addressing information needs in pulmonary hypertension.

Conditions