Implementation of a Follow-Up System for Pediatric Sepsis Survivors in a Large Academic Pediatric Intensive Care Unit

Abstract

Background: Survivors of pediatric sepsis often develop new morbidities and deterioration in quality of life after sepsis, leading to a need for improved follow-up for children who survive sepsis.Objective: To implement a follow-up system for pediatric sepsis survivors in a pediatric health system.Methods: We performed a retrospective case series of patients treated for sepsis from October 2018 through October 2019 in a pediatric intensive care unit in a quaternary children's hospital, and describe implementation of a follow-up system for sepsis survivors. Program planning started in 2017 with multidisciplinary meetings including physical, occupational, and speech therapists, teachers, neuropsychologists, and coordinators from other survivorship programs (neonatology, stroke, and oncology). In 2018, a workshop was held to consult with local and national experts. The Pediatric Sepsis Survivorship Program launched in October 2018 led by a nurse coordinator who met with families to educate about sepsis and offer post-discharge follow-up. Patients with high pre-existing medical complexity or established subspecialty care were referred for follow-up through existing care coordination or subspecialty services plus guidance to monitor for post-sepsis morbidity. For patients with low-moderate medical complexity, the nurse coordinator administered a telephone-based health-assessment 2–3 months after discharge to screen for new physical or psychosocial morbidity. Patients flagged with concerns were referred to their primary physician and/or to expedited neuropsychological evaluation to utilize existing medical services.Results: Of 80 sepsis patients, 10 died, 20 were referred to care coordination by the program, and 13 had subspecialty follow-up. Five patients were followed in different health systems, four were adults not appropriate for existing follow-up programs, four remained hospitalized, and four were missed due to short stay or unavailable caregivers. The remaining 20 patients were scheduled for follow-up with the Pediatric Sepsis Program. Nine patients completed the telephone assessment. Four patients were receiving new physical or occupational therapy, and one patient was referred for neuropsychology evaluation due to new difficulties with attention, behavior, and completion of school tasks.Conclusions: Implementation of an efficient, low-cost pediatric sepsis survivorship program was successful by utilizing existing systems of care, when available, and filling a follow-up gap in screening for select patients.

Functional Outcomes in Survivors of Pediatric Sepsis: A Scoping Review and Discussion of Implications for Low- and Middle-Income Countries

“…Building clinical infrastructures to include critical illness follow-up clinics may help address the multifaceted needs of sepsis survivors ( 5 ). Implementation of a low-cost pediatric sepsis survivorship program is possible by utilizing existing systems of care and can help identify and improve functional outcomes ( 64 ). Research in areas to include QoL of sepsis survivors and caregivers needs to be encouraged.…”

Unplanned Admissions, Emergency Department Visits, and Epilepsy After Critical Neurological Illness Requiring Prolonged Mechanical Ventilation in Children

“…26,27 Post-discharge follow-up care has been targeted at pediatric sepsis patients to ensure optimization of recovery to improve post-discharge outcomes. 28 For this post-sepsis cohort, a targeted approach was used to identify patients at risk of undiagnosed sequelae or inadequate follow-up. Pilot studies of post-neurocritical care clinics have been described recently, with providers identifying needs not recognized at hospital discharge.…”

Designing Support Structures Post Sepsis in Children: Perspectives of the Queensland Paediatric Sepsis Program

“…The need for improved follow up for children with sepsis is highlighted by others ( 3 ). The paediatric program described by Fitzgerald benefits from consumer advocates.…”

“…The recent publication of a paediatric critical care core outcome set may assist in standardisation although these are not specific for sepsis ( 27 ). There are no sepsis specific support processes for children described in the literature in Australia, and only one worldwide ( 3 ). This identifies a critical knowledge gap for providing holistic family centred care.…”

“…More than half of sepsis cases worldwide occur in children, with an estimated 25 million cases of paediatric sepsis in 2017, of whom 3.4 million died (2). Survival from sepsis has increased, but long-term morbidity experienced by paediatric survivors is increasingly apparent, both in scale and range; with effects on physical, psychosocial, educational, and family functioning (3)(4)(5)(6)(7)(8)(9). A recent International Sepsis Forum Colloquium on Sepsis Survivorship suggests "sepsis should be viewed as a life changing and disability inducing event" (10).…”