Information Sources in Pulmonary Hypertension
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Pulmonary Arterial Hypertension (PAH). Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- Brazil
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Official title
Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)
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.
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.
Primary outcome measures
- Main Sources of Health Information [Time frame: Up to 12 months after study start]
Secondary outcome measures (5)
- Satisfaction With Health Information [Time frame: Up to 12 months after study start]
- Confidence in Finding Information [Time frame: Up to 12 months after study start]
- Frequency of Conflicting Information [Time frame: Up to 12 months after study start]
- Most Frequently Searched Topics [Time frame: Up to 12 months after study start]
- Trusted Communication Channels [Time frame: Up to 12 months after study start]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Other
Study locations
Brazil · 1 center
- Instituto do Coração (InCor), Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Univer — São Paulo
Identifiers
NCT: NCT07207525 · SGP 27368