Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up

Abstract

OBJECTIVES: Survivors of the PICU face long-term morbidities across health domains. In this study, we detail active PICU follow-up programs (PFUPs) and identify perceptions and barriers about development and maintenance of PFUPs. METHODS: A web link to an adaptive survey was distributed through organizational listservs. Descriptive statistics characterized the sample and details of existing PFUPs. Likert responses regarding benefits and barriers were summarized. RESULTS: One hundred eleven respondents represented 60 institutions located in the United States (n = 55), Canada (n = 3), Australia (n = 1), and the United Kingdom (n = 1). Details for 17 active programs were provided. Five programs included broad PICU populations, while the majority were neurocritical care (53%) focused. Despite strong agreement on the need to assess and treat morbidity across multiple health domains, 29% were physician only programs, and considerable variation existed in services provided by programs across settings. More than 80% of all respondents agreed PFUPs provide direct benefits and are essential to advancing knowledge on long-term PICU outcomes. Respondents identified “lack of support” as the most important barrier, particularly funding for providers and staff, and lack of clinical space, though successful programs overcome this challenge using a variety of funding resources. CONCLUSIONS: Few systematic multidisciplinary PFUPs exist despite strong agreement about importance of this care and direct benefit to patients and families. We recommend stakeholders use our description of successful programs as a framework to develop multidisciplinary models to elevate continuity across inpatient and outpatient settings, improve patient care, and foster collaboration to advance knowledge.

Is Pediatric Intensive Care Trauma-Informed? A Review of Principles and Evidence

“…This timeline therefore suggests that post-discharge behavioral health follow-up for PICU patients is critical. While follow-up clinics for adult ICU survivors have existed for decades [ 113 ], similar programs are rare for PICU survivors [ 114 ], with the few existing programs embedded within larger children’s hospital systems. Of the PICU follow-up clinics that have been described in the literature, only 12% included a psychologist team member and one in three programs were physician only [ 114 ].…”

“…While follow-up clinics for adult ICU survivors have existed for decades [ 113 ], similar programs are rare for PICU survivors [ 114 ], with the few existing programs embedded within larger children’s hospital systems. Of the PICU follow-up clinics that have been described in the literature, only 12% included a psychologist team member and one in three programs were physician only [ 114 ]. Most mainly provided screening for psychological morbidity and behavioral health care services for children after their PICU stay.…”

“…Most mainly provided screening for psychological morbidity and behavioral health care services for children after their PICU stay. While the vast majority of PICU survivors and families do not receive this coordinated care, many attend follow-ups with their pediatrician or in a specialty clinic [ 114 , 115 ]. Increasingly, pediatric primary care and specialty clinic settings are incorporating integrated behavioral health providers who could conduct universal behavioral health screenings with patients during post-discharge appointments, including screening for traumatic distress with patients and caregivers [ 116 , 117 ].…”

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

“…Current PICU follow-up programs (11)(12)(13)(14)(15)(16)(17) vary widely with respect to, among others, the included patients, involved health care professionals, follow-up moment(s), and assessed outcomes. Moreover, most PICU follow-up programs lack structured data collection (11), which is essential for health care evaluation and scientific research on outcome and prognosis of critically ill children. Defining features of our structured multidisciplinary PICU follow-up program include the following: 1) a multidisciplinary team that is responsible for patient follow-up, 2) structured follow-up using evidence-based protocols and well-defined inclusion and exclusion criteria for follow-up, 3) the use of a one stop shop format for consultations, with consultations of all health care professionals scheduled consecutively, 4) the use of online questionnaires on physical and psychosocial functioning to prepare for the consultations, 5) structured data collection using discrete registrations, 5) yearly health care evaluation sessions aimed at improving the standard of care during and after PICU admission, and 6) the use of outcome data for scientific research.…”

Current Knowledge Regarding Long-Term Consequences of Pediatric Intensive Care: A Staff Survey in Intensive Care Units in German-Speaking Countries

“…Only 14% percent of the respondents reported a follow-up program, this seems low but goes in line with other observations. Williams et al found in an US focused survey on PICU follow-up programs that 35% of the responding PICUs had a program in place of which only about one quarter was broadly inclusive to a wide range of PICU patients ( 27 ). What follow-up after pediatric intensive care should look like in our health system remains unclear.…”