Voisin C
Bull Acad Natl Med. 1998;182(6):1159-71; discussion 1172.
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.
法国约有50000名患有严重慢性呼吸衰竭的患者正在接受居家呼吸支持治疗。其中超过28000名患者由一个非营利性联合网络管理。这些患者年龄各异,7%的患者年龄在30岁以下,45.8%的患者年龄超过70岁。同样,病因和治疗方式也各不相同。由于呼吸支持的技术限制,这些患者存在心理和社会方面的困难,这可能导致他们的生活质量大幅下降。呼吸衰竭患者的医疗社会管理首先包括对患者及其家人或护理人员进行关于治疗目标和实际操作的教育。其次,目标是通过鼓励持续的活动水平来提高生活质量,以避免孤立并保持社会联系。使用液氧增加活动能力的可能性以及呼吸康复计划使这些患者的耐力得到更好的提升,并为他们开辟了新的前景。地区性呼吸非营利家庭护理协会在这些发展中发挥着重要作用,因为它们在患者家中为患者提供直接的医疗、技术以及社会和心理支持,并且通过与参与其护理的其他人建立联系来提供支持。联合这些协会的全国性协会(ANTADIR)能够协同努力,并支持医学、技术和社会经济性质的研究,促进呼吸居家护理,还成立了一个自1984年以来一直在收集数据的全国观测站。