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…
ID
Bron
Verkorte titel
Aandoening
Pulmonary arterial hypertension
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
Quality of Life in patients with pulmonary arterial hypertension
Achtergrond van het onderzoek
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.
Doel van het onderzoek
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.
Onderzoeksopzet
First part: cross sectional study
Second part: prospective, longitudinal intervention study
Onderzoeksproduct en/of interventie
First part: cross-sectional study with questionnaires.
Second part: psychosocial interventions.
Publiek
Meindina Haarman
0503613363
m.g.haarman@umcg.nl
Wetenschappelijk
Meindina Haarman
0503613363
m.g.haarman@umcg.nl
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
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.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
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
Opzet
Deelname
Voornemen beschikbaar stellen Individuele Patiënten Data (IPD)
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Geen registraties gevonden.
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL7528 |
| Ander register | METC UMCG : UMCG Research Register number: 201800785 |