Introduction. There is a higher prevalence of Parkinson’s disease (PD) in rural Australia and a poorer perceived quality of life of rural Australians with PD. Coordinated multidisciplinary teams specialised and experienced in the treatment of PD are recommended as the preferred model of care best able to manage the complexities of this disorder. There remains a lack of team-based specialised PD services in rural Australia available to people living with PD. This study aims to explore how the lack of specialised PD services impacts on the person’s experiences of the health care they receive in rural Victoria. This study compared the health-care experiences of two different cohorts of people with PD living in rural Victoria; one cohort living in East Gippsland have had an established comprehensive care model implemented with local trained teams and supported by a metropolitan PD centre, and the other cohort was recruited from the remainder of Victoria who had received standard rural care. Methods. This descriptive study used a survey to explore health-care experiences. Questionnaires were mailed to participants living in rural Victoria. Eligibility criteria included having a diagnosis of PD or Parkinsonism and sufficient English to respond to the survey. The validated Patient-Centred Questionnaire for PD was used to measure health-care experiences. The questions are grouped accordingly under one of the 6 subscales or domains. Outcomes from the questionnaire included summary experience scores (SES) for 6 subscales; overall patient-centeredness score (OPS); and quality improvement scores (QIS). Secondary outcomes included health-related quality of life using the disease-specific questionnaire PDQ39; disease severity using the Hoehn and Yahr staging tool; and disability using the Movement Disorders Society-Unified Parkinson’s Disease Rating Scale, part II. Results. Thirty-nine surveys were returned from the East Gippsland group and 68 from the rural group. The East Gippsland group rated significantly more positive the subscales “empathy and PD expertise,” , and “continuity and collaboration of professionals,” . The groups did not differ significantly for the remaining 4 subscales () nor for the OPS (). The QIS showed both groups prioritised the health-care aspect “provision of tailored information” for improvement. Quality of life was greater () and impairment () and disability were less () in the East Gippsland group. Conclusion. Participants who received health care from the East Gippsland program had better key health-care experiences along with better QOL and less impairment and disability. Participants prioritised provision of information as needing further improvement.

中文翻译：

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维多利亚农村地区患者对帕金森综合护理的看法。

介绍. 澳大利亚农村地区帕金森病 (PD) 的患病率较高，而澳大利亚农村地区患有 PD 的人的生活质量感知较差。推荐在治疗 PD 方面具有专业和经验的协调多学科团队作为最能管理这种疾病复杂性的首选护理模式。澳大利亚农村地区仍然缺乏可供 PD 患者使用的基于团队的专业 PD 服务。本研究旨在探讨缺乏专门的 PD 服务如何影响人们在维多利亚州农村接受的医疗保健体验。本研究比较了居住在维多利亚州农村的两个不同 PD 人群的医疗保健经验；方法. 这项描述性研究使用调查来探索医疗保健经验。问卷被邮寄给居住在维多利亚州农村的参与者。资格标准包括诊断为 PD 或帕金森氏症以及有足够的英语回答调查。经验证的以患者为中心的 PD 问卷用于衡量医疗保健体验。这些问题相应地分组在 6 个子量表或领域之一下。问卷的结果包括 6 个分量表的总结经验分数 (SES)；以患者为中心的总体评分（OPS）；和质量改进分数（QIS）。次要结果包括使用疾病特异性问卷 PDQ39 获得的与健康相关的生活质量；使用 Hoehn 和 Yahr 分期工具的疾病严重程度；结果。东吉普斯兰组返回了 39 份调查，农村组返回了 68 份。East Gippsland 小组对分量表“同理心和 PD 专业知识”以及“专业人员的连续性和协作”的评价明显更高。其余 4 个分量表 ( )和 OPS ( )组没有显着差异。QIS 显示，两组都将医疗保健方面“提供量身定制的信息”作为改进的优先事项。东吉普斯兰组的生活质量更高（），损伤（）和残疾更少（）。结论. 从东吉普斯兰计划接受医疗保健的参与者具有更好的关键医疗保健体验以及更好的生活质量和更少的损伤和残疾。参与者优先考虑提供需要进一步改进的信息。