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Pulmonary arterial hypertension (PAH) is a chronic disease characterized by an elevation in pulmonary artery pressures and pulmonary vascular resistance. The condition most often is rarely detected, and patients frequently suffer symptoms for several years before being appropriately diagnosed. Patients with PH suffer from several symptoms, such as exertional dyspnea, fatigue, weakness, chest pain, fainting…et al. Pulmonary hypertension is an incurable and progressive disease with complex symptoms and treatments. Patients must learn to deal with their unpredictable future and manage the complex treatments associated with severe adverse effects and need significant changes in lifestyle.
Therefore, it is important to assist patients to develop the ability of symptom management.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Web-based health care program | Experimental | We aim to develop a PAH web-based health care program, and to evaluate the effects of this program on ameliorating social support, self-care ability and active tolerance, and improving symptom distress, anxiety, depression and quality of life in patients with PAH. |
|
| Usual care | No Intervention | usual care |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Web-based health care program | Other | According to the participants' feedback and recommends, we will modify this program to make it more suitable. In the second and third years, we will conduct a parallel-group, double blind, and block randomization, experimental design study to examine the effectiveness of the Pulmonary Hypertension Web-Based Care Program on the improvements of patients' social support, self-care ability, active tolerance, symptom distress, depression, anxiety and quality of life in patients with PAH. |
| Measure | Description | Time Frame |
|---|---|---|
| Pulmonary Arterial Hypertension Symptom | Pulmonary Arterial Hypertension Symptom Interference Scale, PAHSS, The 10-point Likert scale higher scores mean a worse outcome. | Change from Baseline pulmonary Arterial Hypertension Symptom at six months |
| Measure | Description | Time Frame |
|---|---|---|
| Social support | Multidimensional Scale of Perceived Social Support, (MSPSS). The 7-point Likert scale higher scores mean a better outcome.This instrument is 12 questions long and has been widely used and well validated. | Change from Baseline social support at six months |
| Activity ability |
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Inclusion Criteria:
Exclusion Criteria:
1. critical disease
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Chen miao-yi, PhD Stusent | Contact | 0955762820 | miaoyi820@gmail.com |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Tri-Service General Hospital | Recruiting | Taipei, Taiwan | Taipei | 114 | Taiwan |
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|
6 Minute walk test, 6MWD |
| Change from Baseline activity ability at six months |
| Pulmonary Hypertension Quality of life | The Cambridge Pulmonary Hypertension Outcome Review, (CAMPHOR). The 5-point Likert scale higher scores mean a better outcome. | Change from Baseline quality of life at six months |