Division of Pediatric Pulmonary Medicine, Department of Pediatrics, Renaissance School of Medicine at Stony Brook University, Stony Brook, New York, USA.
Department of Pediatrics, Stony Brook Children's Hospital, Renaissance School of Medicine, Stony Brook University, Stony Brook, New York, USA.
Pediatr Pulmonol. 2021 Jul;56(7):2312-2321. doi: 10.1002/ppul.25416. Epub 2021 Apr 20.
Shared decision making (SDM) before nonurgent tracheostomy in a child with chronic respiratory failure (CRF) is often recommended, but has proven challenging to implement in practice. We hypothesize that utilization of the microsystem model for analysis of the complex ecosystem in which SDM occurs will yield insights that enable formation of a reproducible, measurable SDM process.
Retrospective chart review of a case series of children with CRF in whom a SDM process was pursued. The process included a palliative care consult, a validated decision aid and 12 key questions designed to elucidate information integral to an informed decision. Investigators reviewed a single hospital admission for each child, focusing on the 3 core elements of a medical microsystem-the patient, the providers, and information.
Twenty-nine patients who met inclusion criteria ranged in age from 0 to 19.5 years (median 1.7) and remained in the hospital from 10 to 316 days (median 38). Patients were medically complex with multiple and varied respiratory diagnoses, multiple and varied comorbidities, and varying psychosocial environments. 14/29 children received tracheostomies. Each child encountered a mean of 6.2 medical specialties, 1.9 surgical specialties and 8.5 nonphysician led services. Answers to 12 key questions were not documented systematically and often not found in the electronic medical record.
A unique SDM microsystem is formed around each child but not optimally utilized. Explicit recognition of these microsystems would enable team formation and an SDM process comprised of measurable steps and communication patterns.
在患有慢性呼吸衰竭（CRF）的儿童中进行非紧急气管切开术之前进行共同决策（SDM）通常是推荐的，但在实践中已证明难以实施。我们假设，利用微观系统模型分析 SDM 发生的复杂生态系统将产生洞察力，从而形成可重复，可衡量的 SDM 流程。
对一系列患有 CRF 的儿童进行回顾性图表审查，这些儿童均采用 SDM 流程。该过程包括姑息治疗咨询，经过验证的决策辅助工具和 12 个关键问题，旨在阐明对知情决策至关重要的信息。研究人员对每个孩子的单次住院进行了审查，重点是医疗微观系统的三个核心要素-患者，提供者和信息。
符合纳入标准的 29 例患者年龄从 0 岁到 19.5 岁（中位数为 1.7 岁），住院时间从 10 天到 316 天（中位数为 38 天）。患者的医疗状况复杂，有多种不同的呼吸道诊断，多种合并症，以及不同的社会心理环境。29 例患者中有 14 例接受了气管切开术。每个孩子平均遇到 6.2 个医学专业，1.9 个外科专业和 8.5 个非医师领导的服务。12 个关键问题的答案没有系统记录，并且通常在电子病历中找不到。
每个孩子都形成了独特的 SDM 微观系统，但未得到最佳利用。明确识别这些微观系统将能够形成团队，并形成由可衡量的步骤和沟通模式组成的 SDM 流程。
