BACKGROUND:Palliative care is rarely being offered to patients with Parkinson's disease. AIM:To assess symptom prevalence, severity and palliative care needs in advanced stages of Parkinsonism. DESIGN:A cross-sectional survey using a palliative care assessment tool, the Palliative Outcome Scale was administered to patients. SETTING/PARTICIPANTS:Eight-two patients with a diagnosis of idiopathic Parkinson's disease, multiple systems atrophy or progressive supranuclear palsy were included in the study. RESULTS:Their mean age and disease stages 3-5 Hoehn and Yahr were 67 years and 4.1, respectively. Patients reported a mean of 10.7 (standard deviation = 3.9) physical symptoms. Over 80% had pain, fatigue, day time somnolence and problems with mobility. Other symptoms in 50%-80% included constipation, loss of bladder control, swallowing difficulties, drooling, breathlessness and sleep problems. Symptoms rated as causing severe problems were pain, fatigue, constipation and drooling. Assessment of mood revealed 70% of the patients felt anxiety and 60% had felt depressed. Eight-five per cent felt their families were anxious or worried about them. Thirty-eight per cent would have liked more information and 42% had practical problems that still needed to be addressed. There was a positive correlation between number of symptoms and disease severity (r = 0.39, p = 0.01). The total mean Palliative Outcome Scale score was 13.6 (standard deviation = 6.1), suggesting moderate palliative care needs. CONCLUSION:This is the first study to describe the care needs of people with Parkinson's disease using the Palliative Outcome Scale tool. The burden of symptoms and concerns was high in advanced stages of disease. It might be appropriate that people severely affected by these conditions should be considered for referral to specialist palliative care services.

译文

背景:帕金森氏病患者很少接受姑息治疗。
目的:评估帕金森病晚期患者的症状患病率,严重程度和姑息治疗需求。
设计:使用姑息治疗评估工具进行横断面调查,对患者进行“姑息治疗结果量表”。
设置/对象:本研究包括八十二名诊断为特发性帕金森氏病,多系统萎缩或进行性核上性麻痹的患者。
结果:他们的平均年龄和疾病阶段3-5 Hoehn和Yahr分别为67岁和4.1。患者报告的平均身体症状为10.7(标准差= 3.9)。超过80%的人有疼痛,疲劳,白天嗜睡和行动不便的问题。 50%-80%的其他症状包括便秘,失去膀胱控制,吞咽困难,流口水,呼吸困难和睡眠问题。被认为造成严重问题的症状是疼痛,疲劳,便秘和流口水。情绪评估显示70%的患者感到焦虑,60%的患者感到沮丧。百分之八十五的人认为他们的家人感到焦虑或担心。 38%的人希望获得更多信息,而42%的人有实际问题需要解决。症状数量与疾病严重程度之间呈正相关(r = 0.39,p = 0.01)。总体平均姑息治疗量表评分为13.6(标准差= 6.1),表明需要中等程度的姑息治疗。
结论:这是第一项使用姑息结果量表工具描述帕金森氏病患者护理需求的研究。在疾病的晚期阶段,症状和忧虑的负担很高。应当考虑将受这些疾病严重影响的人转介到专门的姑息治疗服务。

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