Pulmonary Arterial Hypertension (PAH)
Conditions
Keywords
Pulmonary Hypertension, Patients, Information Needs, Information Sources, Health Information Seeking
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.
Interventions
None listed
Sponsors
University of Sao Paulo General Hospital
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Main Sources of Health Information | Up to 12 months after study start | Identification of the primary sources of information used by patients with pulmonary hypertension and their informal caregivers, as reported in the structured questionnaire. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Satisfaction With Health Information | Up to 12 months after study start | Level of satisfaction with the health information found, measured on a 5-point Likert scale (1 = not satisfied, 5 = very satisfied). |
| Confidence in Finding Information | Up to 12 months after study start | Degree of confidence when searching for information, measured on a 5-point Likert scale (1 = not confident, 5 = very confident). |
| Frequency of Conflicting Information | Up to 12 months after study start | Proportion of participants reporting that they found contradictory or inconsistent health information related to pulmonary hypertension. |
| Most Frequently Searched Topics | Up to 12 months after study start | Distribution of the main topics searched (e.g., treatments, prognosis, daily care, rights/benefits) as reported in the questionnaire. |
| Trusted Communication Channels | Up to 12 months after study start | Identification of the channels considered most reliable for health information (e.g., physician, healthcare team, patient groups, internet sources). |
Countries
Brazil
Contacts
Primary ContactCaio Fernandes, Principal Investigator
Outcome results
None listed