Where patients and caregivers look for pulmonary hypertension information
Surveys patients and caregivers about where they seek information on pulmonary arterial hypertension.
Plain-language title generated from the registry record
Registry title: Information Sources in Pulmonary Hypertension
Key facts
- Where
- São Paulo, BrazilSee the site
Where in Brazil
- Instituto do Coração InCor, Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Universidade de São PauloSão Paulo, BrazilNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- University of Sao Paulo General Hospital
- Trial code
- NCT07207525
- Record updated
- 6 October 2025
- Original description
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.Read full original descriptionShow less
Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)
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.
Inclusion: Age ≥ 18 years; Confirmed diagnosis of pulmonary hypertension (any clinical group) or informal caregiver of a patient with pulmonary hypertension; Ability to read and understand the questionnaire; Signed informed consent (ICF/TCLE).
Exclusion: Inability to understand or complete the questionnaire; Refusal to participate or not signing the informed consent.