Information Sources in Pulmonary Hypertension (inPHorma)

University of Sao Paulo General Hospital

Status: Not yet enrolling

Conditions: Pulmonary Arterial Hypertension (PAH)

Study type: Observational

Funder types: Other

Identifiers

NCT07207525

SGP 27368

Details and patient eligibility

About

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.

Full 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.

Enrollment: 100 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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

Trial design

100 participants in 2 patient groups

Patients With Pulmonary Hypertension

Description:

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.

Informal Caregivers of Pulmonary Hypertension Patients

Description:

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.