Structured Multidisciplinary Follow-Up After Pediatric Intensive Care: A Model for Continuous Data-Driven Health Care Innovation

Abstract

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.

Healthcare Burden and Resource Utilization After Pediatric Acute Respiratory Distress Syndrome: A Secondary Analysis of the Collaborative Pediatric Critical Care Research Network Acute Respiratory Distress Syndrome Study

“…Improved care coordination support at discharge may improve caregiving burden resulting in improved postdischarge satisfaction in families (6, 29, 30). PICU follow-up clinics have the opportunity to identify and address new or ongoing psychosocial challenges families face (31). Improved care coordination at discharge or PICU follow-up may address these needs regardless of etiology.…”

Long-term multidisciplinary follow-up programs in pediatric cardiac arrest survivors

“…Only a few PICUs worldwide provide a multidisciplinary follow-up program as routine practice at an outpatient clinic with standardized measurements, using validated instruments including neuropsychological assessments by psychologists. 7 , 21 , 22 Requirements for such a successful follow-up program are: 1) survivors can easily access the outpatient clinic, 2) medical care is paid for by health insurance companies, 3) dedicated multidisciplinary teams. In some European countries these requirements are already fulfilled.…”

Editor’s Choice Articles for October

“…For example, in 2021, there was a scoping review of instruments and methods for assessing overall health after PICU admission (18) and, in 2022, there was description of a core outcome measurement set for evaluating PICU survivorship (19,20). The Journal also published three descriptions of structured follow-up by clinical programs in Canada, the United States, and the Netherlands (21)(22)(23)(24). There was the most comprehensive and detailed clinical research analysis of physical, emotional/behavioral, and neurocognitive developmental outcomes 2−4 years after PICU admission in over 600 patients from a randomized clinical trial cohort (25,26).…”