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满足原发性进行性多发性硬化症患者及其家人以及医疗保健界的需求。

Meeting the needs of people with primary progressive multiple sclerosis, their families, and the health-care community.

作者信息

Holland Nancy J, Schneider Diana M, Rapp Robert, Kalb Rosalind C

机构信息

Hastings-on-Hudson, NY, USA (NJH); DiaMed, LLC/DiaMedica Publishing, New York, NY, USA (DS); Multiple Sclerosis Association of America, Cherry Hill, NJ, USA (RR); and National Multiple Sclerosis Society, New York, NY, USA (RCK).

出版信息

Int J MS Care. 2011 Summer;13(2):65-74. doi: 10.7224/1537-2073-13.2.65.

Abstract

Although major advances have been made in delaying or preventing progression for the relapsing forms of multiple sclerosis (MS), little progress has been made to date in disease management for primary progressive MS (PPMS). Treatment strategies are largely focused on managing the symptoms of the disease and providing counseling and other forms of psychosocial support. The nurse plays a major role in managing these patients. This article summarizes a collaborative effort by the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America to analyze the needs of this patient population and respond with programs that will meet those needs. This approach to developing a needs assessment is broadly applicable to other patient populations.

摘要

尽管在延缓或阻止复发型多发性硬化症(MS)的病情进展方面已取得重大进展,但迄今为止,原发性进展型多发性硬化症(PPMS)的疾病管理进展甚微。治疗策略主要集中于控制疾病症状并提供咨询及其他形式的心理社会支持。护士在管理这些患者方面发挥着主要作用。本文总结了美国国家多发性硬化症协会和美国多发性硬化症协会的一项合作成果,即分析这一患者群体的需求,并推出能满足这些需求的项目。这种制定需求评估的方法广泛适用于其他患者群体。

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