Abstract：
BACKGROUND: In spite of being considered the gold-standard of care, little is known about the real-life use of in-home and multidisciplinary care in atypical parkinsonism.
OBJECTIVE: Primary: Examine real-life multidisciplinary care use for Progressive Supranuclear Palsy (PSP). Secondary: a) Compare PSP care to advanced Parkinson\'s disease (APD) care; (b) Explore demographic and clinical variables associated with care needs in both groups.
METHODS: A cross-sectional multicenter observational study enrolled 129 PSP patients and 65 APD patients (Hoehn and Yahr ≥3), matched for sex and age. Univariate and multivariate regression analysis were performed.
RESULTS: Over the previous year, 40 % of PSP patients did not encounter a physical therapist, while only one-third met a speech and language therapist and 5 % an occupational therapist. More than 20 % received in-home care and 32 % needed home structural changes. Compared to APD, PSP patients required more day-time, night-time and home structural changes. When considering both PSP and APD in multivariate analysis, reduced functional autonomy and living without a family caregiver were both related to day-time home assistance and to the need of at least one home care service. A PSP diagnosis compared to APD was a risk factor for having at least four multidisciplinary visits in a year. Finally, PSP diagnosis and being from the Northern Italy were significantly related with home structural changes.
CONCLUSIONS: There\'s a significant gap in providing multidisciplinary care for PSP patients. Our findings emphasize the need for a shared, integrated care plan at a national level for patients with atypical parkinsonism.
OBJECTIVE: Primary: Examine real-life multidisciplinary care use for Progressive Supranuclear Palsy (PSP). Secondary: a) Compare PSP care to advanced Parkinson\'s disease (APD) care; (b) Explore demographic and clinical variables associated with care needs in both groups.
METHODS: A cross-sectional multicenter observational study enrolled 129 PSP patients and 65 APD patients (Hoehn and Yahr ≥3), matched for sex and age. Univariate and multivariate regression analysis were performed.
RESULTS: Over the previous year, 40 % of PSP patients did not encounter a physical therapist, while only one-third met a speech and language therapist and 5 % an occupational therapist. More than 20 % received in-home care and 32 % needed home structural changes. Compared to APD, PSP patients required more day-time, night-time and home structural changes. When considering both PSP and APD in multivariate analysis, reduced functional autonomy and living without a family caregiver were both related to day-time home assistance and to the need of at least one home care service. A PSP diagnosis compared to APD was a risk factor for having at least four multidisciplinary visits in a year. Finally, PSP diagnosis and being from the Northern Italy were significantly related with home structural changes.
CONCLUSIONS: There\'s a significant gap in providing multidisciplinary care for PSP patients. Our findings emphasize the need for a shared, integrated care plan at a national level for patients with atypical parkinsonism.
摘要：
背景：尽管被认为是护理的黄金标准，关于非典型帕金森病中家庭和多学科护理的实际使用知之甚少。
目的：主要：检查进行性核上性麻痹（PSP）的实际多学科护理应用。次要：a）将PSP护理与晚期帕金森氏病（APD）护理进行比较；（b）探索两组与护理需求相关的人口统计学和临床变量。
方法：一项横断面多中心观察性研究纳入了129名PSP患者和65名APD患者（Hoehn和Yahr≥3），性别和年龄相匹配。进行单因素和多因素回归分析。
结果：前一年，40%的PSP患者没有遇到物理治疗师，而只有三分之一的人遇到了言语和语言治疗师，5%的人遇到了职业治疗师。超过20％的人接受了家庭护理，32％的人需要改变家庭结构。与APD相比，PSP患者需要更多的白天时间，夜间和家庭结构的变化。在多变量分析中同时考虑PSP和APD时，功能自主权的减少和没有家庭照顾者的生活都与日常家庭援助和至少一项家庭护理服务的需要有关。与APD相比，PSP诊断是一年中至少进行四次多学科访问的风险因素。最后,PSP诊断和来自意大利北部与家庭结构变化显着相关。
结论：在为PSP患者提供多学科护理方面存在显著差距。我们的发现强调了共享的必要性，针对非典型帕金森病患者的国家一级综合护理计划。
目的：主要：检查进行性核上性麻痹（PSP）的实际多学科护理应用。次要：a）将PSP护理与晚期帕金森氏病（APD）护理进行比较；（b）探索两组与护理需求相关的人口统计学和临床变量。
方法：一项横断面多中心观察性研究纳入了129名PSP患者和65名APD患者（Hoehn和Yahr≥3），性别和年龄相匹配。进行单因素和多因素回归分析。
结果：前一年，40%的PSP患者没有遇到物理治疗师，而只有三分之一的人遇到了言语和语言治疗师，5%的人遇到了职业治疗师。超过20％的人接受了家庭护理，32％的人需要改变家庭结构。与APD相比，PSP患者需要更多的白天时间，夜间和家庭结构的变化。在多变量分析中同时考虑PSP和APD时，功能自主权的减少和没有家庭照顾者的生活都与日常家庭援助和至少一项家庭护理服务的需要有关。与APD相比，PSP诊断是一年中至少进行四次多学科访问的风险因素。最后,PSP诊断和来自意大利北部与家庭结构变化显着相关。
结论：在为PSP患者提供多学科护理方面存在显著差距。我们的发现强调了共享的必要性，针对非典型帕金森病患者的国家一级综合护理计划。
