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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 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. |
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| Measure | Description | Time Frame |
|---|---|---|
| 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 |
| Measure | Description | Time Frame |
|---|---|---|
| Satisfaction With Health Information | Level of satisfaction with the health information found, measured on a 5-point Likert scale (1 = not satisfied, 5 = very satisfied). | Up to 12 months after study start |
| Confidence in Finding Information |
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Inclusion Criteria:
Exclusion Criteria:
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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.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Caio Fernandes, Principal Investigator | Contact | +551126615034 | caio.cesar@hc.fm.usp.br |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Instituto do Coração (InCor), Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Universidade de São Paulo | São Paulo | São Paulo | 05403-900 | Brazil |
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| ID | Term |
|---|---|
| D000081029 | Pulmonary Arterial Hypertension |
| D006976 | Hypertension, Pulmonary |
| ID | Term |
|---|---|
| D008171 | Lung Diseases |
| D012140 | Respiratory Tract Diseases |
| D006973 | Hypertension |
| D014652 | Vascular Diseases |
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Degree of confidence when searching for information, measured on a 5-point Likert scale (1 = not confident, 5 = very confident).
| Up to 12 months after study start |
| Frequency of Conflicting Information | Proportion of participants reporting that they found contradictory or inconsistent health information related to pulmonary hypertension. | Up to 12 months after study start |
| Most Frequently Searched Topics | Distribution of the main topics searched (e.g., treatments, prognosis, daily care, rights/benefits) as reported in the questionnaire. | Up to 12 months after study start |
| Trusted Communication Channels | Identification of the channels considered most reliable for health information (e.g., physician, healthcare team, patient groups, internet sources). | Up to 12 months after study start |
| D002318 |
| Cardiovascular Diseases |