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Clinical Trial Summary

The investigators aim to : - describe and analyse psychological characteristics, cognitive factors and representations in patients with Pulmonary Hypertension, a rare disease. - assess the psychological characteristics impact on quality of life, check the association between disease and QoL evolution, and the variability of QoL parameters over severity class changes and follow-up


Clinical Trial Description

PAH is a rare, and severe disease, potentially mortal, affecting preferentially young subjects. The knowledge and the international literature, as regards the quality of life, the expectations, the needs and the psychosocial characteristics of patients with PAH, are non-existent. But it is known that the persons affected by rare diseases are more vulnerable, on the psychological, social, economic and cultural planIn all the stages of the treatment, patients with PAH are confronted with heavy psychosocial situations, in a context of vital risk, with exceptional medicinal treatments (intravenous administration at home). - QoL might be differently affected by these changes according to situational and dispositional psychological dimensions. - the predictive role of these characteristics on the current and later quality of life, as well as the impact of diverse cognitive mediators and strategies to cope with the disease, should be investigated.The respiratory diseases department of the Montpellier hospital is regional competence center for PAH in Languedoc-Roussillon, under the aegis of the national reference center (the respiratory diseases department of Antoine Béclère hospital, Le Petit-Clamart). ;


Study Design


Related Conditions & MeSH terms


NCT number NCT01380054
Study type Observational
Source University Hospital, Montpellier
Contact
Status Completed
Phase
Start date May 31, 2011
Completion date May 20, 2016

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