关键词: Adolescents Conservative care End-of-life Health-related quality of life Paediatrics Palliative care Symptom burden

来  源:   DOI:10.1007/s00467-024-06465-8

Abstract:
BACKGROUND: Kidney failure at any age has a significant impact on quality of life (QoL) but the overall symptom burden for children and young people (CYP) is poorly described. Kidney failure has no cure and whilst transplantation is the preferred management option, it is not always possible, with patients requiring supportive care at the end of their lives.
OBJECTIVE: To use the literature to understand the symptom burden for CYP with kidney failure who are approaching end-of-life.
METHODS: Using three databases, a systematic literature review was performed to identify eligible studies to extract data on symptoms experienced in CYP aged < 21 years with kidney failure. Data extraction was completed by two authors using a pre-designed proforma. Study quality assessment was undertaken using the BMJ AXIS tool.
RESULTS: A total of 20,003 titles were screened to yielding 35 eligible studies including 2,862 CYP with chronic kidney disease (CKD), of whom 1,624 (57%) had CKD stage 5. The studies included a median of 30 (range 7-241) patients. Symptoms were subcategorised into eight groups: sleep, mental health, gastrointestinal, dermatology, ear, nose and throat (ENT), neurology, multiple symptoms, and ophthalmology. The prevalences of the most commonly reported symptoms were: restless leg syndrome 16.7-45%, sleep disordered breathing 20-46%, hypersomnia 14.3-60%, depression 12.5-67%, anxiety 5.3-34%, overall gastrointestinal symptoms 43-82.6%, nausea and vomiting 15.8-68.4%, abdominal pain 10.5-67.4%, altered appetite or anorexia 19-90%, xerosis 53.5-100%, pruritis 18.6-69%, headache 24-76.2% and ophthalmological symptoms 26%. Within each subgroup, the symptom definitions used were heterogeneous, the methods of assessment were varied and some symptoms, such as pain and constipation, were poorly represented.
CONCLUSIONS: There is a marked lack of evidence relating to the symptom burden for CYP with CKD. This study highlights the high symptom prevalence, particularly in relation to sleep, mental health, headache, dermatological and gastrointestinal symptoms. There is a need for consensus recommendations on the evaluation and management of symptoms for CYP with CKD approaching end-of-life.
UNASSIGNED: CRD42022346120.
摘要:
背景:任何年龄的肾功能衰竭都会对生活质量(QoL)产生重大影响,但儿童和年轻人的总体症状负担(CYP)描述甚少。肾功能衰竭无法治愈,而移植是首选的治疗选择,这并不总是可能的,患者在生命结束时需要支持性护理。
目的:利用文献了解CYP伴肾衰竭患者临终的症状负担。
方法:使用三个数据库,我们进行了系统的文献综述,以确定符合条件的研究,以提取年龄<21岁的CYP合并肾衰竭的症状数据.数据提取由两位作者使用预先设计的形式完成。使用BMJAXIS工具进行研究质量评估。
结果:总共筛选了20,003个标题,以产生35个合格研究,包括2,862个CYP与慢性肾病(CKD),其中1,624人(57%)患有CKD5期。该研究包括中位数30(范围7-241)患者。症状分为八组:睡眠,心理健康,胃肠,皮肤病学,耳朵,鼻子和喉咙(ENT),神经学,多种症状,和眼科。最常报告的症状的发生率是:不宁腿综合征16.7-45%,睡眠呼吸紊乱20-46%,失眠症14.3-60%,抑郁症12.5-67%,焦虑5.3-34%,总体胃肠道症状43-82.6%,恶心呕吐15.8-68.4%,腹痛10.5-67.4%,食欲改变或厌食症19-90%,干燥症53.5-100%,瘙痒18.6-69%,头痛24-76.2%,眼科症状26%。在每个子组中,使用的症状定义是异质的,评估方法多种多样,有些症状,比如疼痛和便秘,代表性差。
结论:明显缺乏与CYP伴CKD的症状负担相关的证据。这项研究强调了高症状患病率,特别是关于睡眠,心理健康,头痛,皮肤和胃肠道症状。有必要就CKD接近生命终点的CYP症状的评估和管理提出共识建议。
CRD42022346120。
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