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原发性抗体缺陷的γ球蛋白终身治疗:患者皮下自我注射和家庭治疗的体验

Lifelong treatment with gammaglobulin for primary antibody deficiencies: the patients' experiences of subcutaneous self-infusions and home therapy.

作者信息

Gardulf A, Björvell H, Andersen V, Björkander J, Ericson D, Frøland S S, Gustafson R, Hammarström L, Nyström T, Søeberg B

机构信息

Department of Internal Medicine, Karolinska Hospital, Stockholm, Sweden.

出版信息

J Adv Nurs. 1995 May;21(5):917-27. doi: 10.1046/j.1365-2648.1995.21050917.x.

DOI:10.1046/j.1365-2648.1995.21050917.x
PMID:7541407
Abstract

Primary antibody deficiencies are chronic conditions and the patients usually need lifelong replacement therapy with gammaglobulin to prevent or reduce infections. It has been shown that the gammaglobulin can be given safely as subcutaneous infusions, instead of intramuscular injections or intravenous infusions. The major aim of this multi-centre study was to investigate the perceptions of the subcutaneous method among patients using it, both in hospital settings and as self-infusions at home. The study included 152 patients: 89 women, 63 men, mean age 44 years (range 18-76). Data were collected by using questionnaires. The patients were found to have a strongly positive attitude towards receiving the replacement therapy as subcutaneous infusions, perceived the method as effective in preventing infections and wished to retain the treatment. However, the younger patients found the subcutaneous infusions more uncomfortable and were less determined to continue with the therapy as compared with the older individuals. The responsibility for self-infusions at home was accepted by the patients, leading to an increased independence from the health care personnel and to a feeling of flexibility and freedom. As these patients have a chronic disease and are in need of lifelong treatment, it is important to discuss the development of structured education and training programmes in which special emphasis is placed on the support of the younger patients. It is suggested that Orem's nursing model of self-care may serve as a conceptual framework for nurses working in this specific area of nursing care.

摘要

原发性抗体缺陷是一种慢性病,患者通常需要终身接受丙种球蛋白替代疗法以预防或减少感染。研究表明,丙种球蛋白可以通过皮下注射安全给药,而不是肌肉注射或静脉注射。这项多中心研究的主要目的是调查患者(包括在医院环境中以及在家中自行注射的患者)对皮下注射方法的看法。该研究纳入了152名患者:89名女性,63名男性,平均年龄44岁(范围为18 - 76岁)。通过问卷调查收集数据。结果发现,患者对接受皮下注射替代疗法持非常积极的态度,认为该方法在预防感染方面有效,并希望继续接受治疗。然而,与年长患者相比,年轻患者觉得皮下注射更不舒服,并且继续接受治疗的决心较小。患者接受了在家自行注射的责任,这使得他们对医护人员的依赖减少,并产生了灵活性和自由感。由于这些患者患有慢性病且需要终身治疗,因此讨论制定结构化教育和培训计划非常重要,其中应特别强调对年轻患者的支持。建议奥瑞姆的自我护理护理模式可作为在这一特定护理领域工作的护士的概念框架。

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