Bükki Johannes, Nübling Georg, Lorenzl Stefan
Hospice Care DaSein, München, Germany Insitute for Interdisciplinary Research in Palliative Care, Paracelsus Medical University, Salzburg, Austria
Insitute for Interdisciplinary Research in Palliative Care, Paracelsus Medical University, Salzburg, Austria Department of Palliative Care, Klinikum der Ludwig-Maximilians-Universität, Campus Großhadern, München, Germany Department of Neurology, Klinikum der Ludwig-Maximilians-Universität, Campus Großhadern, München, Germany.
Am J Hosp Palliat Care. 2016 Jun;33(5):477-82. doi: 10.1177/1049909114565110. Epub 2014 Dec 30.
Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are characterized by rapid deterioration and a fatal outcome.
Admission triggers, treatment efficacy, and care patterns.
Retrospective analysis of patients with PSP/CBD admitted to an inpatient specialized palliative care service.
In 38 patients, there were 63 admissions for swallowing difficulties, falls, pain, impaired communication, cognitive/mood disturbances, respiratory symptoms, and infection. Mean length of stay was 11.6 days. Treatment response was variable. In 68%, of admission episodes there was stabilization or improvement, 75% were discharged home. In case of readmission, the mean interval has been 9.7 months. Time since diagnosis and admission triggers were not associated with outcome or death.
Patients showed high symptom load contrasting with discharge rates and subsequent health care utilization. Brief multidisciplinary interventions might be helpful to preserve autonomy.
进行性核上性麻痹（PSP）和皮质基底节变性（CBD）的特点是病情迅速恶化并导致致命后果。
入院诱因、治疗效果和护理模式。
对入住专科姑息治疗服务机构的PSP/CBD患者进行回顾性分析。
38例患者因吞咽困难、跌倒、疼痛、沟通障碍、认知/情绪紊乱、呼吸症状和感染共入院63次。平均住院时间为11.6天。治疗反应各不相同。在68%的入院病例中病情稳定或有所改善，75%的患者出院回家。再次入院时，平均间隔时间为9.7个月。自诊断以来的时间和入院诱因与预后或死亡无关。
患者症状负担较重，与出院率及后续医疗保健利用情况形成对比。简短的多学科干预可能有助于保持患者的自主性。
