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NCT Number: NCT07207525

Information Sources in Pulmonary Hypertension

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.

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Key information

Conditions

Pulmonary Arterial Hypertension (PAH) Cardiovascular Diseases Hypertension Hypertension, Pulmonary Lung Diseases Pulmonary Arterial Hypertension Respiratory Tract Diseases Vascular Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Instituto do Coração (InCor), Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Universidade de São Paulo

São Paulo, 05403-900, Brazil

Location contact

Caio Fernandes, Principal Investigator, PhD

CONTACT

[email protected]

1126615034

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Main Sources of Health Information

    Time frame: 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 outcomes

  1. Satisfaction With Health Information

    Time frame: 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).

  2. Confidence in Finding Information

    Time frame: 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).

  3. Frequency of Conflicting Information

    Time frame: Up to 12 months after study start

    Proportion of participants reporting that they found contradictory or inconsistent health information related to pulmonary hypertension.

  4. Most Frequently Searched Topics

    Time frame: 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.

  5. Trusted Communication Channels

    Time frame: 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).

Study contacts

Contact information is provided by the study sponsor or research team.

Caio Fernandes, Principal Investigator

CONTACT

[email protected]

+551126615034

Sponsors and collaborators

Lead sponsor

University of Sao Paulo General Hospital

Other

Registry information

Official study title

Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)

Acronym: inPHorma

Important dates

Study start
2025
Primary completion
2026
Study completion
2027
First posted
Oct 6, 2025
Registry last updated
Oct 6, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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