Kristjanson Linda J, Aoun Samar M, Oldham Lynn
Western Australian Centre for Cancer and Palliative Care, School of Nursing, Midwifery and Postgraduate Medicine, Edith Cowan University, Churchlands, Western Australia 6018.
Int J Palliat Nurs. 2006 Aug;12(8):368-77. doi: 10.12968/ijpn.2006.12.8.368.
to identify and compare the needs for supportive care/palliative care services of people in Australia with Motor Neurone Disease (MND), Multiple Sclerosis (MS), Huntington's Disease (HD) and Parkinson's Disease (PD) and the needs of their carers.
national, descriptive survey of service use and support needs for 503 patients and 373 carers. Patients and carers were recruited from the databases of the disease associations in three Australian states. Patients were excluded if recently diagnosed or too sick or disabled to complete the survey. This was a specification of the ethics committee overseeing this project.
the MND and HD groups had the greatest needs for support and appeared most receptive to a palliative approach. The MS group was least likely to have a carer and more likely to live alone. HD and PD groups had the highest rates of anxiety and HD groups had the highest rate of depression.
patients and carers who received more tailored services and more palliative care services were the most satisfied. Therefore, results highlight the need for tailored and flexible models of care for these groups with unique care requirements.
识别并比较澳大利亚患有运动神经元病（MND）、多发性硬化症（MS）、亨廷顿舞蹈症（HD）和帕金森病（PD）的患者及其护理人员对支持性护理/姑息治疗服务的需求。
针对503名患者和373名护理人员的服务使用情况及支持需求进行的全国性描述性调查。患者和护理人员从澳大利亚三个州的疾病协会数据库中招募。如果患者最近被诊断出患病，或者病情过重或残疾无法完成调查，则将其排除。这是监督该项目的伦理委员会的规定。
MND和HD组对支持的需求最大，似乎最能接受姑息治疗方法。MS组拥有护理人员的可能性最小，独居的可能性更大。HD和PD组的焦虑率最高，HD组的抑郁率最高。
接受更具针对性服务和更多姑息治疗服务的患者和护理人员满意度最高。因此，研究结果凸显了为这些有独特护理需求的群体提供量身定制且灵活的护理模式的必要性。
