Ting James, Songer Kathryn, Bailey Valerie, Rotman Chloe, Lipsitz Stuart, Rosenberg Abby R, Delgado-Corcoran Claudia, Moynihan Katie M
Department of Pediatrics, Johns Hopkins University, Baltimore, MD, USA.
Department of Pediatrics, University of Utah, Salt Lake City, UT, USA.
Pediatr Cardiol. 2025 Jun;46(5):1142-1156. doi: 10.1007/s00246-024-03535-4. Epub 2024 Jun 22.
While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a systematic review using keywords related to palliative care, quality of life and care-satisfaction, and heart disease. We searched PubMed, EMBASE, CINAHL, CENTRAL and Web of Science in December 2023. Screening, data extraction and methodology followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations. Pairs of trained reviewers independently evaluated each article. All full texts excluded from the review were hand-screened for eligible references including systematic reviews in general pediatric populations. Two reviewers independently extracted: (1) study design; (2) methodology; (2) setting; (3) population; (4) intervention/exposure and control definition; (5) outcome measures; and (6) results. Of 4059 studies screened, 9 met inclusion criteria including two with overlapping patient data. Study designs were heterogenous, including only one randomized control and two historical control trials with SPPC as a prospective intervention. Overall, there was moderate to high risk of bias. Seven were single centers studies. In combined estimates, patients who received SPPC were more likely to have advance care planning documented (RR 2.7, [95%CI 1.6, 4.7], p < 0.001) and resuscitation limits (RR 4.0, [2.0, 8.1], p < 0.001), while half as likely to have active resuscitation at end-of-life ([0.3, 0.9], p = 0.032). For parental stress, receipt of SPPC improved scores by almost half a standard deviation (RR 0.48, 95%CI 0.10, 0.86) more than controls. Ultimately, we identified a paucity of high-quality data studying the influence of SPPC; however, findings correlate with literature in other pediatric populations. Findings suggest benefits of SPPC integration for patients with heart disease and their families.
虽然许多儿科心脏病专家强调了姑息治疗参与的重要性，但很少有研究评估专科儿科姑息治疗（SPPC）对患有心脏病儿童的影响。我们使用与姑息治疗、生活质量、护理满意度和心脏病相关的关键词进行了系统评价。我们于2023年12月检索了PubMed、EMBASE、CINAHL、CENTRAL和科学网。筛选、数据提取和方法遵循系统评价和Meta分析的首选报告项目（PRISMA）建议。由经过培训的评审员对每篇文章进行独立评估。所有被排除在综述之外的全文都经过人工筛选，以寻找合格的参考文献，包括一般儿科人群的系统评价。两名评审员独立提取：（1）研究设计；（2）方法；（2）背景；（3）人群；（4）干预/暴露和对照定义；（5）结局指标；以及（6）结果。在筛选的4059项研究中，9项符合纳入标准，其中两项患者数据重叠。研究设计多种多样，仅包括一项随机对照试验和两项以SPPC作为前瞻性干预措施的历史对照试验。总体而言，存在中度至高度偏倚风险。七项是单中心研究。综合估计显示，接受SPPC的患者更有可能记录有预立医疗计划（RR 2.7，[95%CI 1.6，4.7]，p < 0.001）和复苏限制（RR 4.0，[2.0，8.1]，p < 0.001），而在生命末期进行积极复苏的可能性只有一半（[0.3，0.9]，p = 0.032）。对于父母的压力而言，接受SPPC的患者得分比对照组提高了近半个标准差（RR 0.48，95%CI 0.10，0.86）。最终，我们发现研究SPPC影响的高质量数据匮乏；然而，研究结果与其他儿科人群的文献相关。研究结果表明SPPC整合对患有心脏病的患者及其家庭有益。
