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Measurement of health-related quality of life in pediatric organ transplantation recipients: a systematic review of the PedsQL transplant module.
Quality of Life Research ( IF 3.5 ) Pub Date : 2020-01-02 , DOI: 10.1007/s11136-019-02398-0
Michael O Killian 1, 2 , Kelli N Triplett 2, 3 , Saba S Masood 3 , Jason Boehler 1 , Gillian S Mayersohn 4, 5
Affiliation  

OBJECTIVE To collect and assess the extant empirical literature assessing disease-specific health-related quality of life (HRQOL) in pediatric transplant recipients using the PedsQL 3.0 Transplant Module (PedsQL-TM) assessment. STUDY DESIGN A systematic search and review procedure was conducted of research reporting use and results of the PedsQL-TM with samples of pediatric heart, liver, kidney, and lung transplantation. Searches were conducted in nine scholarly databases and two additional sources to identify unpublished research. Multiple reviewers screened studies meeting inclusion criteria in accordance with PRISMA guidelines. RESULTS A final sample of nine studies reported findings for the PedsQL-TM with pediatric organ transplant recipients. Most studies relied on either kidney or liver transplant recipients from single pediatric transplant centers. Factor validity of the PedsQL-TM and inter-rater reliability (IRR) between patients and parents have not been adequately determined. Internal consistency reliability was found as acceptable or excellent across multiple studies. PedsQL-TM scores were found to vary with other HRQOL issues, yet few studies examined their association with medication adherence or posttransplant health outcomes. CONCLUSIONS With the goal of enhancing and sustaining HRQOL in pediatric organ transplant recipients, the need for a psychometrically valid and reliable measure of transplant-specific HRQOL is apparent. Research on the PedsQL-TM supports the promise of this measure although future efforts should be taken to examine measurement issues such as factor validity and IRR. Assessing transplant-specific HRQOL in these patients is paramount for their care and appropriate decision-making by patients, families, and the transplant team.

中文翻译:

儿科器官移植受者健康相关生活质量的测量:PedsQL移植模块的系统评价。

目的使用PedsQL 3.0移植模块(PedsQL-TM)评估来收集和评估现有的经验文献,以评估小儿移植受者特定疾病的健康相关生活质量(HRQOL)。研究设计对PedsQL-TM的研究报告使用情况和结果进行了系统的搜索和审查程序,并附有儿科心脏,肝脏,肾脏和肺移植的样本。在9个学术数据库和2个其他来源中进行搜索,以识别未发表的研究。多个审阅者根据PRISMA指南筛选了符合纳入标准的研究。结果9项研究的最终样本报告了PedsQL-TM与小儿器官移植接受者的发现。大多数研究依赖单个儿童移植中心的肾脏或肝脏移植受者。PedsQL-TM的因素有效性和患者与父母之间的评估者间可靠性(IRR)尚未得到充分确定。在多项研究中,内部一致性可靠性被认为是可接受的或优异的。发现PedsQL-TM分数随其他HRQOL问题而变化,但很少有研究检查其与药物依从性或移植后健康结局的关系。结论以增强和维持小儿器官移植接受者的HRQOL为目标,显然需要一种心理上有效且可靠的移植特异性HRQOL测量方法。对PedsQL-TM的研究支持这一措施的前景,尽管将来应努力检查诸如因子有效性和IRR等度量问题。在这些患者中评估特定于移植的HRQOL对于患者,家人和移植团队的护理和适当的决策至关重要。
更新日期:2020-01-02
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