多发性硬化症的社区服务：仍然是碰运气的事。
Community services in multiple sclerosis: still a matter of chance.
作者信息
Freeman J A, Thompson A J
机构信息
University Department of Clinical Neurology and Neurorehabilitation, Institute of Neurology, Queen Square, London WC1N 3BG, UK.
出版信息
J Neurol Neurosurg Psychiatry. 2000 Dec;69(6):728-32. doi: 10.1136/jnnp.69.6.728.
OBJECTIVES
People with multiple sclerosis often have multiple complex needs that require input from a wide range of services. Many complain that services are inadequate and poorly coordinated. Few studies have been undertaken to support this contention and objective data are scarce. The level of services and home modifications received by people with multiple sclerosis across a broad range of disease severity has been investigated.
METHODS
As part of a quality of life study, 150 adults with clinically definite multiple sclerosis were interviewed, using a structured questionnaire, to determine their current use of outpatient and community services and the home modifications in place. Disability, handicap, and emotional status were also measured.
RESULTS
Forty five per cent of people did not receive any community services other than contact with their general practitioner. Thirty nine per cent of people with moderate and 12% with severe disability failed to receive community services. For the services received: 17% had contact with a community nurse; 33% with a care attendant or home help; 23% with a physiotherapist, 21% with an occupational therapist, and 10% with a social worker. Fifty eight per cent of people had modifications to their home as a direct result of multiple sclerosis. The relation between level of disability and number of services and adaptations received was moderate (r=0.58 and 0.54 respectively) and the relation between level of services and age (r=0.12), living alone (r=0.16), and emotional status (r=0.10) was negligible.
CONCLUSIONS
Despite a shift of emphasis from hospital to community care, and the establishment of standards of care for multiple sclerosis, many people with moderate or severe disability fail to receive assistance. These results provide evidence to support the dissatisfaction felt by people with multiple sclerosis in relation to the services they receive. It raises questions about equitable allocation of resources and highlights the urgent need for a review of community services.
目的
多发性硬化症患者通常有多种复杂需求，需要广泛的服务提供方给予支持。许多患者抱怨服务不足且协调不善。很少有研究来支持这一观点，客观数据也很匮乏。我们调查了不同疾病严重程度的多发性硬化症患者所接受的服务水平及家庭改造情况。
方法
作为一项生活质量研究的一部分，我们使用结构化问卷对150名临床确诊的成年多发性硬化症患者进行了访谈，以确定他们目前对门诊和社区服务的使用情况以及现有的家庭改造情况。同时还测量了残疾程度、残障情况和情绪状态。
结果
45%的患者除了与全科医生接触外，未接受任何社区服务。中度残疾患者中有39%、重度残疾患者中有12%未接受社区服务。在接受的服务方面：17%的患者与社区护士有接触；33%的患者与护理员或家政服务人员有接触；23%的患者与物理治疗师有接触，21%的患者与职业治疗师有接触，10%的患者与社会工作者有接触。58%的患者因多发性硬化症对其住所进行了改造。残疾程度与所接受的服务数量和改造之间的关系为中等（分别为r = 0.58和0.54），服务水平与年龄（r = 0.12）、独居情况（r = 0.16）和情绪状态（r = 0.10）之间的关系可忽略不计。
结论
尽管重点已从医院护理转向社区护理，且已制定了多发性硬化症的护理标准，但许多中度或重度残疾患者仍未获得援助。这些结果为支持多发性硬化症患者对其所接受服务的不满提供了证据。这引发了关于资源公平分配的问题，并凸显了对社区服务进行审查的迫切需求。
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