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镰状细胞病的综合护理

The comprehensiveness care of sickle cell disease.

作者信息

Okpala Iheanyi, Thomas Veronica, Westerdale Neil, Jegede Tina, Raj Kavita, Daley Sadie, Costello-Binger Hilda, Mullen Jean, Rochester-Peart Collis, Helps Sarah, Tulloch Emense, Akpala Mary, Dick Moira, Bewley Susan, Davies Mark, Abbs Ian

机构信息

Department of Haematology, Guy's & St Thomas' Hospitals Trust, London, UK.

出版信息

Eur J Haematol. 2002 Mar;68(3):157-62. doi: 10.1034/j.1600-0609.2002.01523.x.

Abstract

Millions of people across the world have sickle cell disease (SCD). Although the true prevalence of SCD in Europe is not certain, London (UK) alone had an estimated 9000 people with the disorder in 1997. People affected by SCD are best managed by a multidisciplinary team of professionals who deliver comprehensive care: a model of healthcare based on interaction of medical and non-medical services with the affected persons. The components of comprehensive care include patient/parent information, genetic counselling, social services, prevention of infections, dietary advice and supplementation, psychotherapy, renal and other specialist medical care, maternal and child health, orthopaedic and general surgery, pain control, physiotherapy, dental and eye care, drug dependency services and specialist sickle cell nursing. The traditional role of haematologists remains to co-ordinate overall management and liase with other specialities as necessary. Co-operation from the affected persons is indispensable to the delivery of comprehensive care. Working in partnership with the hospital or community health service administration and voluntary agencies enhances the success of the multidisciplinary team. Holistic care improves the quality of life of people affected by SCD, and reduces the number as well as length of hospital admissions. Disease-related morbidity is reduced by early detection and treatment of chronic complications. Comprehensive care promotes awareness of SCD among affected persons who are encouraged to take greater control of their own lives, and achieves better patient management than the solo efforts of any single group of professionals. This cost-effective model of care is an option for taking haemoglobinopathy services forward in the new millennium.

摘要

全球数以百万计的人患有镰状细胞病(SCD)。尽管欧洲SCD的实际患病率尚不确定,但仅伦敦(英国)在1997年估计就有9000人患有这种疾病。受SCD影响的人最好由提供全面护理的多学科专业团队进行管理:这是一种基于医疗和非医疗服务与患者互动的医疗保健模式。全面护理的组成部分包括患者/家长信息、遗传咨询、社会服务、感染预防、饮食建议和补充、心理治疗、肾脏及其他专科医疗护理、母婴健康、骨科和普通外科、疼痛控制、物理治疗、牙科和眼科护理、药物依赖服务以及镰状细胞病专科护理。血液科医生的传统角色仍然是协调整体管理并在必要时与其他专科进行联络。患者的合作对于提供全面护理必不可少。与医院或社区卫生服务管理部门以及志愿机构合作能够提高多学科团队的成功率。整体护理可改善受SCD影响者的生活质量,并减少住院次数和缩短住院时间。通过早期发现和治疗慢性并发症可降低与疾病相关的发病率。全面护理可提高受影响者对SCD的认识,鼓励他们更好地掌控自己的生活,并且比任何单一专业团队的单独努力能实现更好的患者管理。这种具有成本效益的护理模式是在新千年推进血红蛋白病服务的一种选择。

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