Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Department of Pediatric Intensive Care, Amsterdam Reproduction and Development Research Institute, Meibergdreef 9, Amsterdam, The Netherlands.
Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Department of Pediatrics, Emma Children's Hospital Amsterdam UMC Follow Me Program & Emma Neuroscience Group, Amsterdam Reproduction and Development Research Institute, Meibergdreef 9, Amsterdam, The Netherlands.
Pediatr Crit Care Med. 2023 Jun 1;24(6):484-498. doi: 10.1097/PCC.0000000000003213. Epub 2023 Feb 17.
Morbidity after PICU admission for critical illness is a growing concern. Sequelae may occur in various domains of functioning and can only appropriately be determined through structured follow-up. Here, we describe the process of designing and implementing a structured multidisciplinary follow-up program for patients and their parents after PICU admission and show the first results illustrating the significance of our program.
Prospective observational cohort study.
Outpatient PICU follow-up clinic.
Patients 0-18 years old admitted to our PICU.
None.
In our structured multidisciplinary follow-up program, follow-up care is provided by a pediatric intensivist and psychologist and in addition, depending on patient's critical illness and received PICU treatment(s), by a pediatric pulmonologist, cardiologist, neurologist, and/or neuropsychologist. All consultations are scheduled consecutively. Collected data are stored in a hospital-wide data warehouse and used for yearly health care evaluation sessions as well as scientific research. Challenges in organizing this follow-up program include technological challenges, providing time-efficient care, participation rate, and completeness of questionnaires. In our experience, a dedicated team is essential to tackle these challenges. Our first results, obtained in 307 of 388 referred patients (79.1%), showed the diversity of problems arising after PICU discharge, including physical, neurocognitive, and psychosocial sequelae. In addition, our data also reflected the risk of psychosocial problems among parents. Within the limited operation time of our follow-up program, the program has evolved based on our experiences and the data collected.
We successfully developed and implemented a structured multidisciplinary follow-up program for patients and their parents after PICU admission. This program may help to timely initiate appropriate interventions, improve the standard of care during and after PICU admission, and facilitate scientific research on outcome and prognosis after PICU admission.
儿童重症监护病房（PICU）危重病患儿的发病率日益受到关注。后遗症可能发生在各种功能领域，只能通过有组织的随访来确定。在这里，我们描述了为 PICU 入院后的患者及其家长设计和实施结构化多学科随访计划的过程，并展示了第一个结果，说明了我们计划的重要性。
前瞻性观察队列研究。
门诊 PICU 随访诊所。
年龄在 0-18 岁之间入住我们 PICU 的患者。
无。
在我们的结构化多学科随访计划中，由儿科重症监护医生和心理学家提供随访护理，此外，根据患者的危重病和接受的 PICU 治疗（s），由儿科肺科医生、心脏病专家、神经科医生和/或神经心理学家提供随访护理。所有咨询都是连续安排的。收集的数据存储在一个全院范围内的数据仓库中，用于每年的医疗保健评估会议和科学研究。组织这种随访计划的挑战包括技术挑战、提供高效的护理、参与率和问卷的完整性。根据我们的经验，一个专门的团队对于解决这些挑战是至关重要的。我们的第一个结果是在 388 名转诊患者中的 307 名（79.1%）获得的，结果显示了 PICU 出院后出现的各种问题，包括身体、神经认知和社会心理后遗症。此外，我们的数据还反映了家长出现社会心理问题的风险。在我们随访计划的有限运作时间内，该计划根据我们的经验和收集的数据进行了演变。
我们成功地为 PICU 入院后的患者及其家长开发和实施了结构化的多学科随访计划。该计划可以帮助及时启动适当的干预措施，改善 PICU 入院期间和之后的护理标准，并促进 PICU 入院后预后和结局的科学研究。
