Specialized Pediatric Palliative Home Care: A Prospective Evaluation
Specialized Pediatric Palliative Home Care: A Prospective Evaluation
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DOI：
10.1089/jpm.2013.0129
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发表时间：
2013-12-01
影响因子：
2.8
通讯作者：
Fuehrer, Monika
中科院分区：
文献类型：
--
作者：
Groh, Gesa;Borasio, Gian Domenico;Fuehrer, Monika
目标：在德国，自2007年以来，患有晚期生命限制疾病的儿童有资格获得儿科姑息性家庭护理（PPHC），这是由新成立的专业PPHC团队提供的。本研究的目的是评估家长对PPHC的接受程度和有效性。方法：在慕尼黑大学医院的PPHC团队治疗的儿童的父母符合这项前瞻性非随机研究的条件。两项调查（PPHC团队参与前后）的主要主题是评估儿童的症状控制和生活质量（QoL）；以及家长对护理的满意度、患者护理负担（Hausliche Pflegeskala，家庭护理量表，HPS）、焦虑和抑郁（医院焦虑和抑郁量表，HADS）和QoL（危及生命疾病的生活质量-家庭护理人员版，QOLLTI-F）。结果：在2011年4月至2012年6月期间新入院的43个PPHC家庭中，有40个被纳入研究。第一次和第二次访谈的中位数间隔为8.0周。PPHC小组的参与使儿童的症状和生活质量得到了显著改善
Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to evaluate the acceptance and effectiveness of PPHC as perceived by the parents. Methods: Parents of children treated by the PPHC team based at the Munich University Hospital were eligible for this prospective nonrandomized study. The main topics of the two surveys (before and after involvement of the PPHC team) were the assessment of symptom control and quality of life (QoL) in children; and the parents' satisfaction with care, burden of patient care (Hausliche Pflegeskala, home care scale, HPS), anxiety and depression (Hospital Anxiety and Depression Scale, HADS), and QoL (Quality of Life in Life-Threatening Illness-Family Carer Version, QOLLTI-F). Results: Of 43 families newly admitted to PPHC between April 2011 and June 2012, 40 were included in the study. The median interval between the first and second interview was 8.0 weeks. The involvement of the PPHC team led to a significant improvement of children's symptoms and QoL (P