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Structured Multidisciplinary Follow-Up After Pediatric Intensive Care: A Model for Continuous Data-Driven Health Care
Eleonore S V de Sonnaville1,2, Job B M van Woensel1, Johannes B van Goudoever3
1Amsterdam UMC, University of Amsterdam, Emma Children's Hospital, Department of Pediatric Intensive Care, Amsterdam Reproduction and Development Research Institute, Meibergdreef 9, Amsterdam, The Netherlands.
Insights
Developing a structured follow-up program for pediatric intensive care unit (PICU) survivors and their parents is crucial. Our program identified diverse physical, neurocognitive, and psychosocial sequelae in children and parents post-PICU admission.
Area of Science:
- Pediatric critical care medicine
- Clinical outcomes research
- Multidisciplinary healthcare
Background:
- Morbidity and long-term sequelae after pediatric intensive care unit (PICU) admission are significant concerns.
- Structured follow-up is essential for assessing diverse domains of functioning post-critical illness.
Purpose of the Study:
- To describe the design and implementation of a structured multidisciplinary follow-up program for pediatric critical illness survivors and their parents.
- To present initial findings demonstrating the program's significance in identifying post-PICU sequelae.
Main Methods:
- Prospective observational cohort study of pediatric patients (0-18 years) admitted to the PICU.
- Outpatient follow-up clinic involving pediatric intensivists, psychologists, and subspecialists (pulmonologist, cardiologist, neurologist, neuropsychologist) as needed.
- Consecutive consultations with data stored in a hospital-wide data warehouse for evaluation and research.
Main Results:
- The program successfully enrolled 79.1% (307/388) of referred patients.
- Identified a wide range of physical, neurocognitive, and psychosocial sequelae in pediatric survivors.
- Highlighted the increased risk of psychosocial problems among parents of critically ill children.
Conclusions:
- A structured multidisciplinary follow-up program for post-PICU patients and their parents has been successfully developed and implemented.
- This program facilitates timely interventions, improves the standard of care, and supports research on PICU outcomes.
- The program's evolution based on experience and collected data underscores its adaptability and importance.
Objectives:
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.
Design:
Prospective observational cohort study.
Setting:
Outpatient PICU follow-up clinic.
Patients:
Patients 0-18 years old admitted to our PICU.
Interventions:
None.
Measurements And Main Results:
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.
Conclusions:
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.
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