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

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON21691

Enrollment

200

Registered

2019-02-15

Start date

2019-07-01

Completion date

Unknown

Last updated

2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Pulmonary arterial hypertension

Interventions

First part: cross-sectional study with questionnaires. Second part: psychosocial interventions.

Eligibility

Inclusion criteria

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

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

Design outcomes

Primary

Measure	Time frame
Quality of Life in patients with pulmonary arterial hypertension	—

Secondary

Measure	Time frame
Quality of Life in parents and siblings of patients with pulmonary arterial hypertension	—

Contacts

Public ContactMeindina Haarman

Center for Congenital Heart Diseases, Beatrix Children's Hospital, University Medical Center Groningen, the Netherlands

m.g.haarman@umcg.nl0503613363

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)