Gottberg K, Einarsson U, Ytterberg C, Fredrikson S, von Koch L, Holmqvist L Widén
Division of Neurology, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden.
Mult Scler. 2008 Aug;14(7):962-71. doi: 10.1177/1352458508089688. Epub 2008 Jun 23.
To explore and to describe the use of health, social, and informal care services and satisfaction with care in a population-based sample of people with multiple sclerosis (PwMS) in Stockholm County.
The sample consisted of 166 PwMS who participated in the Stockholm MS study. Data on the use of health care services and satisfaction with care and services in PwMS were collected through a computerized register and through home visits to PwMS using structured, face-to-face interviews.
During the study period of 3 years, 92% had been in contact with out-patient departments of Neurology, and 76% had been in contact with other hospital out-patient departments. Some 83% were in contact with primary care, and primary care contacts constituted 54% of all out-patient care. One third of the PwMS (32%) used home help service (17%) or personal assistants (19%), and higher proportions used informal help from partners (37%). PwMS were in general satisfied with the care received, with the exception of access to coordinated rehabilitation and psychosocial counseling. The proportion of PwMS using inpatient, outpatient, and social/informal (excluding neurological) care increased with the degree of disease severity.
The great majority of PwMS use hospital specialist care and primary care in parallel, with many departments and services involved. Better accessibility of certain services, for example, psychosocial counseling and rehabilitation, and other improvements, for example efforts to provide coordinated and comprehensive care for PwMS may increase satisfaction with care and should be the focus of scientific evaluation.
在斯德哥尔摩郡以人群为基础的多发性硬化症患者(PwMS)样本中,探索并描述健康、社会及非正式护理服务的使用情况以及对护理的满意度。
样本由166名参与斯德哥尔摩多发性硬化症研究的PwMS组成。通过计算机化登记以及使用结构化面对面访谈对PwMS进行家访,收集有关医疗服务使用情况以及对护理和服务满意度的数据。
在为期3年的研究期间,92%的患者曾与神经内科门诊接触,76%的患者曾与其他医院门诊接触。约83%的患者与初级保健接触,初级保健接触占所有门诊护理的54%。三分之一的PwMS(32%)使用了家政服务(17%)或个人助理(19%),更高比例的患者得到了伴侣的非正式帮助(37%)。PwMS总体上对所接受的护理感到满意,但获得协调康复和心理社会咨询方面除外。使用住院、门诊以及社会/非正式(不包括神经科)护理的PwMS比例随疾病严重程度增加而上升。
绝大多数PwMS同时使用医院专科护理和初级保健,涉及许多科室和服务。改善某些服务的可及性,例如心理社会咨询和康复,以及其他改进措施,例如努力为PwMS提供协调和全面的护理,可能会提高对护理的满意度,应成为科学评估的重点。