Growing up with pulmonary arterial hypertension, a Quality of Life Study

• Conditions: Pulmonary arterial hypertension

• Registration Number: NL-OMON21691
• Lead Sponsor: Center for Congenital Heart Diseases

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Last Update Posted: 28 February 2024

Recruitment & Eligibility

• Status: Pending
• Sex: Not specified
• Target Recruitment: 200

Inclusion Criteria

Patients with Pulmonary Arterial Hypertension:
- Age 5-18 years
-Patients with Pulmonary Arterial Hypertension: diagnosis confirmed according to the standards of the National Expertise Center for Pulmonary Hypertension in Childhood in the University Medical Center Groningen, Groningen, the Netherlands

Parent(s) of patients with Pulmonary Arterial Hypertension:
-Parent of a child with Pulmonary Arterial Hypertension with a confirmation of the diagnosis according to the standards of the National Expertise Center for pulmonary hypertension in childhood in the University Medical Center Groningen, Groningen, the Netherlands

Siblings of patient:
-Age 5-18 years
- brother or sister of patient with Pulmonary Arterial Hypertension: diagnosis confirmed according to the standards of the National Expertise Center for Pulmonary Hypertension in Childhood in the University Medical Center Groningen, Groningen, the Netherlands.

Exclusion Criteria

A potential subject who meets any of the following criteria will be excluded from participation in this study:

Patients with pulmonary arterial hypertension
-age > 18 years of age
-age < 5 years of age
-not familiar with the Dutch language

Parents:
-not familiar with the Dutch language
-Being under examination for non-diagnosed disease at time of investigation

Siblings
-not familiar with the Dutch language
-Being under examination for non-diagnosed disease at time of investigation
-< 5 years of age

Study & Design

• Study Type: Observational non invasive
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Quality of Life in patients with pulmonary arterial hypertension

Secondary Outcome Measures

Name	Time	Method
Quality of Life in parents and siblings of patients with pulmonary arterial hypertension