Information Sources in Pulmonary Hypertension
inPHorma
Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)
1 other identifier
observational
100
1 country
1
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.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for all trials
Started Nov 2025
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
September 26, 2025
CompletedFirst Posted
Study publicly available on registry
October 6, 2025
CompletedStudy Start
First participant enrolled
November 1, 2025
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 1, 2026
ExpectedStudy Completion
Last participant's last visit for all outcomes
March 1, 2027
October 6, 2025
September 1, 2025
1.1 years
September 26, 2025
September 26, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Main Sources of Health Information
Identification of the primary sources of information used by patients with pulmonary hypertension and their informal caregivers, as reported in the structured questionnaire.
Up to 12 months after study start
Secondary Outcomes (5)
Satisfaction With Health Information
Up to 12 months after study start
Confidence in Finding Information
Up to 12 months after study start
Frequency of Conflicting Information
Up to 12 months after study start
Most Frequently Searched Topics
Up to 12 months after study start
Trusted Communication Channels
Up to 12 months after study start
Study Arms (2)
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.
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.
Eligibility Criteria
Adults with a confirmed diagnosis of pulmonary hypertension and their informal caregivers (family members or non-professional supporters), recruited from a specialized center in Brazil.
You may qualify if:
- 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)
You may not qualify if:
- Inability to understand or complete the questionnaire
- Refusal to participate or not signing the informed consent
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (1)
Instituto do Coração (InCor), Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Universidade de São Paulo
São Paulo, São Paulo, 05403-900, Brazil
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Central Study Contacts
Study Design
- Study Type
- observational
- Observational Model
- OTHER
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- PhD
Study Record Dates
First Submitted
September 26, 2025
First Posted
October 6, 2025
Study Start
November 1, 2025
Primary Completion (Estimated)
December 1, 2026
Study Completion (Estimated)
March 1, 2027
Last Updated
October 6, 2025
Record last verified: 2025-09