Division of Pediatric Pain, Palliative and Integrative Medicine, Department of Pediatrics, University of California San Francisco School of Medicine, San Francisco, California.
Stad Center for Pediatric Pain, Palliative and Integrative Medicine, University of California San Francisco Benioff Children's Hospitals, Oakland and San Francisco, California.
Hosp Pediatr. 2024 Jan 1;14(1):1-10. doi: 10.1542/hpeds.2023-007222.
Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository.
Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead).
Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%).
Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.
儿科姑息治疗（PPC）中的质量基准有助于发现护理中的差距，并指导质量改进。我们的研究目的是从多站点 PPC 数据存储库中描述 PPC 住院患者的转介流程、跨学科 PPC 服务提供和患者结局。
对参加儿科姑息治疗质量网络（2016-2022 年）的 5 家美国医院的 1587 例 PPC 住院患者进行了横断面、行政数据分析。PPC 临床医生向国家存储库提交了关键质量指标的数据。对项目和转介特征、护理流程和结局进行了描述性分析。通过出院情况（存活或死亡）比较转介时间、PPC 服务时间和总住院时间。
各项目平均服务年限为 13 年（范围为 6-17 年）。大多数患者年龄>1 岁（77%）。常见的诊断包括实体瘤癌症（29%）和先天性或染色体疾病（14%）。在出院前，护理通常由≤2 名 PPC 团队成员（53%）提供（中位数=7d，四分位距 2-23）。转介 PPC 的原因通常不止一个，包括心理社会支持（78%）、治疗目标讨论/预先护理计划（42%）、非疼痛症状管理（34%）和疼痛（21%）。在第二次评估时，疼痛（71%）、呼吸困难（51%）、疲劳（46%）和喂养问题（39%）的中重度症状得到改善。
在住院期间，因心理社会和身体症状管理而转介至 PPC。在初次评估时，中重度症状困扰评分通常会有所改善。这些发现强调需要确保多学科 PPC 团队配备，以满足重病儿童的复杂护理需求。
