Information Sources in Pulmonary Hypertension

NCT ID: NCT07207525

Last Updated: 2025-10-06

Basic Information

• Recruitment Status: NOT_YET_RECRUITING
• Total Enrollment: 100 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2025-11-30
• Study Completion Date: 2027-03-31

Brief Summary

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.

Detailed Description

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

Pulmonary Arterial Hypertension (PAH)

Study Design

• Observational Model Type: OTHER
• Study Time Perspective: PROSPECTIVE

Study Groups

Patients With Pulmonary Hypertension

Adults (≥18 years) with a confirmed diagnosis of pulmonary hypertension, from any clinical group. Participants will complete a structured, self-administered questionnaire about their sources of health information, expectations, satisfaction, and preferred communication channels. No intervention or treatment is provided.

No interventions assigned to this group

Informal Caregivers of Pulmonary Hypertension Patients

Adults (≥18 years) who provide non-professional care or support to a patient with pulmonary hypertension (family member or close contact). Caregivers will complete the same structured questionnaire, focusing on their experiences, information needs, and trusted sources. No intervention or treatment is provided.

No interventions assigned to this group

Eligibility Criteria

Inclusion Criteria

• 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 Criteria

• Inability to understand or complete the questionnaire
• Refusal to participate or not signing the informed consent

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

University of Sao Paulo General Hospital

OTHER

Sponsor Role: lead

Responsible Party

Caio Júlio César dos Santos Fernandes

PhD

Responsibility Role: PRINCIPAL_INVESTIGATOR

Locations

Instituto do Coração (InCor), Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Universidade de São Paulo

São Paulo, São Paulo, Brazil

Countries

Brazil

Central Contacts

Caio Fernandes, Principal Investigator

Role: CONTACT

caio.cesar@hc.fm.usp.br

+551126615034

Facility Contacts

Caio Fernandes, Principal Investigator, PhD

Role: primary

caio.cesar@hc.fm.usp.br

1126615034

Other Identifiers

SGP 27368

Identifier Type: -

Identifier Source: org_study_id