Walter Jennifer K, DeCamp Lisa Ross, Warrier Kavita S, Murphy Terrance P, Keefer Patricia M
Division of General Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, PA 19104, USA.
Hosp Pediatr. 2013 Apr;3(2):129-38. doi: 10.1542/hpeds.2012-0047.
Parents of children with complex chronic conditions report fragmented care, unmet medical needs, and financial strain from health care costs. The aim of this study was to identify both prevalent themes discussed during pediatric palliative care consultation of patients with complex chronic conditions cared for by pediatric generalists and variation in consultation content by age and timing of consultation in disease course.
Forty randomly selected initial inpatient or outpatient consultation notes authored by the pediatric palliative care team at an academic, tertiary care children's hospital. Inclusion required that patients were primarily cared for by general pediatricians, pediatric hospitalists, or pediatric intensivists, instead of subspecialists. Qualitative analysis by 5 team members utilizing consensus-based findings was used to develop themes. Descriptive statistics were used to describe variations in themes across age and disease course.
Common themes included thorough review of patient baseline functioning, current symptoms, assessment of family's understanding of the prognosis of the patient, coordination of communication with other medical teams and outpatient health care services, consideration of caregiver resources and burdens, and offering a framework for decision-making. Variation in consult themes by age/disease course included more discussion of communication problems and symptom management when patients were at their baseline, but otherwise little variation was found.
Common themes covered in initial consultations correspond with documented unmet needs for chronically ill children. There was no significant variation in consultation themes by age/disease course, suggesting that generalists could broadly apply palliative care techniques to improve family-centered care.
患有复杂慢性病儿童的家长反映，他们面临着医疗护理碎片化、医疗需求未得到满足以及医疗费用带来的经济压力。本研究的目的是确定儿科普通科医生为患有复杂慢性病的患者提供儿科姑息治疗咨询期间所讨论的普遍主题，以及咨询内容在年龄和疾病进程中咨询时间方面的差异。
从一家学术性三级儿童医院的儿科姑息治疗团队撰写的笔记中随机选取40份首次住院或门诊咨询记录。纳入标准要求患者主要由普通儿科医生、儿科住院医师或儿科重症监护医师护理，而非专科医生。由5名团队成员采用基于共识的结果进行定性分析，以确定主题。使用描述性统计来描述各年龄组和疾病进程中主题的差异。
常见主题包括全面审查患者的基线功能、当前症状、评估家庭对患者预后的理解、与其他医疗团队和门诊医疗服务的沟通协调、考虑照顾者的资源和负担，以及提供决策框架。咨询主题在年龄/疾病进程方面的差异包括，当患者处于基线状态时，更多地讨论沟通问题和症状管理，但除此之外，未发现明显差异。
首次咨询中涵盖的常见主题与慢性病患儿未得到满足的需求记录相符。咨询主题在年龄/疾病进程方面没有显著差异，这表明普通科医生可以广泛应用姑息治疗技术来改善以家庭为中心的护理。
