Comparative Effectiveness and Safety of Hospital-Based Pediatric Palliative Care

描述(由申请人提供)：在过去的十年里，儿科姑息治疗已经成为一个新的专科，因为许多儿童医院都建立了姑息治疗计划。尽管如此，对患有限制生命和绝症的儿童的最佳护理仍然受到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不足的阻碍。缺乏有效和安全的信息和证据阻碍了儿科姑息治疗的发展，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计划和团队的发展方面，这些计划和团队致力于确保所有可能需要姑息治疗的儿科患者能够获得最高质量的临床服务。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Premier医院数据集，详细记录患者接受药物剂量的情况，研究2006-2008年间患有危及生命的复杂慢性病的儿科患者接受姑息治疗相关药物(PCRP)的使用、有效性和安全性。PCRP代表用于治疗患者症状和缓解任何痛苦的药物。该小组已确定了七类PRCP药物。具体目的是：1.确定危及生命的复杂慢性疾病住院儿童使用PCRP的总体比例和比率以及可能的药物-药物相互作用的比率；2.分析不同医院在治疗这些住院儿童时使用PCRP的差异；3.比较匹配的危及生命的复杂慢性病住院儿童组之间PCRP治疗相关的结果和不良事件，衡量在8种特定临床情景下接受和未接受PCRP治疗的患者在结果和不良事件方面的差异。调查人员的多学科研究团队将受益于专家顾问小组的指导，专家顾问小组包括失去亲人的父母和领先的国家儿科姑息治疗从业者和研究人员。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护理试验的设计和实施。 公共卫生相关性：目前，由于缺乏关于姑息治疗相关药物的相对有效性和安全性的证据，改善儿科姑息治疗以及疼痛和其他引起痛苦的症状的管理的努力受到阻碍。通过对儿科住院药房和临床记录的大型详细数据库的量化分析，该项目将提供详细的信息，帮助指导未来的质量改进计划和建议，以通过在儿科住院患者姑息治疗环境中更好地使用药物来改善患者结局并减少不良事件。

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.