Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 100
- 试验地点
- 1
- 主要终点
- Main Sources of Health Information
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Other
- 时间视角
- Prospective
入排标准
- 年龄范围
- 18 Years 至 —（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •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)
排除标准
- •Inability to understand or complete the questionnaire
- •Refusal to participate or not signing the informed consent
结局指标
主要结局
Main Sources of Health Information
时间窗: 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.
次要结局
- 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)
研究者
Caio Júlio César dos Santos Fernandes
PhD
University of Sao Paulo General Hospital