Comparative Effectiveness and Safety of Hospital-Based Pediatric Palliative Care

描述（由申请人提供）：在过去的十年中，随着许多儿童医院建立了姑息治疗项目，儿科姑息治疗已经成为一个新的亚专科。尽管如此，关于用于控制患者疼痛和症状的药物的有效性和安全性的证据基础不足，仍然阻碍了对生命受限和终末期疾病儿童的最佳护理。无论是在提高临床实践质量方面，还是在激励以医院为基础的项目和团队致力于确保所有可能需要姑息治疗的儿科患者获得最高质量的临床服务方面，有效性和安全性的信息和证据的缺乏都阻碍了儿科姑息治疗的发展。因此，我们建议研究以医院为基础的儿科姑息治疗的比较有效性和安全性（PA-09-070, AHRQ (RO1)，比较有效性组合）。我们将使用庞大而详细的儿科健康信息系统和主要医院数据集，详细记录患者的药物剂量，研究2006-2008年危及生命的复杂慢性病儿科患者接受姑息治疗相关药物（PCRPs）的使用、有效性和安全性。pcrp代表用于治疗患者症状和减轻任何痛苦的药物。该小组已经确定了7类PRCP药物。具体目标是：1。确定危及生命的复杂慢性疾病住院儿童中PCRPs的总体比例和使用率以及可能的药物-药物相互作用率；2. 分析各医院在治疗这些住院儿童中使用PCRPs的差异；3. 比较匹配组有危及生命的复杂慢性疾病住院儿童的pcrp治疗相关结局和不良事件，测量在8种特定临床情况下接受和未接受pcrp治疗的患者的结局和不良事件的差异。多学科研究小组的调查人员将受益于专家顾问小组的指导，包括丧亲父母和领先的国家儿科姑息治疗从业人员和研究人员。由此产生的发现和信息将塑造和激励未来的护理质量指标、临床护理指南以及临床姑息治疗试验的设计和实施。

DESCRIPTION (provided by applicant): Over the past decade, pediatric palliative care has emerged as a new subspecialty, as palliative care programs are being established at many children's hospitals. Nonetheless, optimal care for children with life-limiting and terminal conditions continues to be hindered by an inadequate evidence base regarding the effectiveness and safety of medications used to manage patients' pain and symptoms. The dearth of information and evidence of effectiveness and safety hampers the development of pediatric palliative care, both in terms of improving the quality of clinical practice and in terms of motivating the development of hospital-based programs and teams dedicated to assuring access for all pediatric patients potentially in need of palliative care to highest quality clinical services. We therefore propose to study the Comparative Effectiveness and Safety of Hospital-Based Pediatric Palliative Care (PA-09-070, AHRQ (RO1), Comparative Effectiveness Portfolio). We will use the vast and detailed Pediatric Health Information System and Premier hospital datasets, which record patients' receipt of doses of medications in detail, to study the use, effectiveness, and safety of palliative care-related pharmaceuticals (PCRPs) received by pediatric patients with life-threatening complex chronic conditions in 2006-2008. PCRPs represent drugs that are used to treat patient symptoms and ameliorate any suffering. Seven PRCP classes of drugs have been identified by this group. Specifically aims are to: 1. Determine the overall proportions and rates of use of PCRPs and rates of possible drug-drug interactions among hospitalized children with life-threatening complex chronic conditions; 2. Analyze variation among hospitals in the usage of PCRPs in the treatment of these hospitalized children; 3. Compare PCRP-treatment-associated outcomes and adverse events between matched sets of hospitalized children with life-threatening complex chronic conditions, measuring the differences in outcomes and adverse events among patients who did and who did not receive PCRPs in 8 specific clinical scenarios. The multi-disciplinary research team of investigators will benefit from the guidance of a panel of expert consultants, including bereaved parents and leading national pediatric palliative care practitioners and researchers. The resulting findings and information will shape and motivate future quality of care metrics, clinical care guidelines, and the design and conduct of clinical palliative care trials. PUBLIC HEALTH RELEVANCE: Efforts to improve pediatric palliative care, and the management of pain and other symptoms that cause suffering, are currently hampered by a dearth of evidence regarding the comparative effectiveness and safety of palliative care-related pharmaceutics. Through the quantitative analysis of large detailed databases of pediatric hospitalization pharmacy and clinical records, this project will provide detailed information that will assist in guiding future quality improvement programs and recommendations to improve patient outcomes and reduce adverse events by better use of drugs in the pediatric inpatient palliative care setting.