[Medico-social management of severe respiratory insufficiency. Role of Associations]

Roughly 50,000 patients in France with severe chronic respiratory failure are under treatment with respiratory domiciliary support. Over 28,000 of these are managed by a non-profit associative network. These patients are of varied age with 7% under the age of 30 and 45.8% over 70 years. Likewise the causes and the treatment modalities are varied. Because of the technical constraints of respiratory support these patients have difficulties of a psychological and social nature which can lead to a substantial reduction in their quality of life. The medico-social management of the patient with respiratory failure involves firstly the education of the patient and his family or carers about the objectives and practicalities of the treatment. Secondly there is the objective of improving quality of life by inciting a continued level of activity, in order to avoid isolation and to maintain social contact. The possibility of increased mobility by the use of liquid oxygen together with respiratory rehabilitation programs leads to better effort tolerance and opens up new perspectives for these patients. The regional respiratory non-profit home care associations have an important role in these developments as they provide direct medical and technical as well as social and psychological support to the patient in his home, and also by the contacts formed with others involved in his care. The national association (ANTADIR) which federates the associations allows concerted effort and supports research of a medical, technical and socio-economic nature and promotes respiratory home care as well as forming a national Observatory which has collected data since 1984.