Westhoff G, Zink A
Deutsches Rheuma-Forschungszentrum Berlin Schumannstr. 21/22 10117 Berlin.
Z Rheumatol. 2001 Feb;60(1):28-40. doi: 10.1007/s003930170095.
Although increased efforts have been made, rheumatoid arthritis still leads to severe disability and dependence on external help in about one-third of the patients. Relatively little is known on how help-dependent RA patients manage everyday life, to what extent they need help, by whom the help is given, what the patients' future help perspectives are and what kind of patient- and resource-related characteristics are associated with unmet need.
By means of standardized interviews a representative sample of severly disabled RA patients was investigated with respect to present life situation, functional capacity, amount of help needed, relationship of caregiver and patient, health status of caregiver, stability of the help situation, housing preferences and help-seeking behaviour. The patients were classified as being either in definite need of help or independent of external help.
Patients with comparable disabilities living on their own had only one-third of the help of those living together with others. They received help slightly more often from non-family caregivers, such as visiting nurses or privately paid household help, than from family members. Although many patients had rather uncertain perspectives for the future, the majority vehemently rejected living in a retirement home or in a home for the disabled. This refusal to live in an institution was independent of functional capacity, adequacy of the present help situation and the financial situation. Unmet need was highly associated with the age and health status of the caregiver as well as the help-seeking behaviour of the dependent person, but not with functional status or available resources.
Given an appropriate home, the majority of conditions for a self-determined life for help-dependent RA patients are satisfied by the present outpatient help and care systems in Germany, but patients and their care givers need to be encouraged to take advantage of the available help and care facilities.
尽管已付出更多努力，但类风湿性关节炎仍会导致约三分之一的患者出现严重残疾并依赖外部帮助。对于依赖帮助的类风湿性关节炎患者如何管理日常生活、他们在多大程度上需要帮助、由谁提供帮助、患者未来的帮助前景如何以及哪些与患者和资源相关的特征与未满足的需求相关，我们所知相对较少。
通过标准化访谈，对一组具有代表性的重度残疾类风湿性关节炎患者样本进行了调查，内容涉及当前生活状况、功能能力、所需帮助量、照顾者与患者的关系、照顾者的健康状况、帮助情况的稳定性、住房偏好和寻求帮助的行为。这些患者被分类为明确需要帮助或不依赖外部帮助。
残疾程度相当的独居患者获得的帮助仅为与他人同住患者的三分之一。他们从非家庭照顾者（如访视护士或私人雇佣的家政服务人员）那里获得帮助的频率略高于从家庭成员那里获得帮助的频率。尽管许多患者对未来的前景相当不确定，但大多数人强烈拒绝入住养老院或残疾人之家。这种拒绝入住机构的态度与功能能力、当前帮助情况的充分性和经济状况无关。未满足的需求与照顾者的年龄和健康状况以及依赖者的寻求帮助行为高度相关，但与功能状态或可用资源无关。
在德国，现有的门诊帮助和护理系统满足了依赖帮助的类风湿性关节炎患者自主生活的大多数条件，但需要鼓励患者及其照顾者利用现有的帮助和护理设施。
