No registrations found.
ID
Source
Brief title
Health condition
Pulmonary arterial hypertension
Sponsors and support
Intervention
Outcome measures
Primary outcome
Quality of Life in patients with pulmonary arterial hypertension
Secondary outcome
Quality of Life in parents and siblings of patients with pulmonary arterial hypertension
Background summary
The primary objective of the proposed project is to investigate the Quality of Life (QoL) of children with PAH and the psychosocial and social impact of the disease. Further, the secondary objective is to study the impact on family life, parents and siblings of a child with PAH. Third, we will offer psychosocial interventions for patients (and their parents/siblings) to assess whether improved QoL can be achieved.
Study objective
Based on clinical experience in our multidisciplinary team caring for children with PAH and CHD, we expect that children with PAH and their families suffer from decreased psychosocial QoL compared to healthy norms. We expect psychosocial intervention programs to improve QoL in these children and their families.
Study design
First part: cross sectional study
Second part: prospective, longitudinal intervention study
Intervention
First part: cross-sectional study with questionnaires.
Second part: psychosocial interventions.
Meindina Haarman
0503613363
m.g.haarman@umcg.nl
Meindina Haarman
0503613363
m.g.haarman@umcg.nl
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
Design
Recruitment
IPD sharing statement
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| NTR-new | NL7528 |
| Other | METC UMCG : UMCG Research Register number: 201800785 |