Two Centers for Adult & Pediatric Critical Illness Recovery
After discharge from the ICU following a life-threatening injury or illness, many patients—both adults and children—experience significant health problems that affect their ability to function in activities of daily living. These impairments, known as Post Intensive Care Syndrome (PICS), may remain for months or even years after a patient returns home. PICS and PICS-p (the pediatric version) cause a range of problems from cognitive or brain dysfunction and muscle weakness or balance issues to changes in memory, thoughts, feelings or sleep patterns.
“Doctors are very good at saving lives, treating the initial illness or trauma, and then discharging patients from the ICU,” said Brad Butcher, MD, associate professor of critical care medicine and the founder and director of the adult Critical Illness Recovery Center. “But it’s only in the last 10 years or so that the medical community has begun to pay serious attention to PICS by developing clinics to diagnose and treat the persistent physical, psychiatric, and cognitive disabilities faced by survivors of critical illness.”
Research shows a myriad of potential of consequences from a long stay in an ICU. A third of patients develop depression, anxiety, or PTSD and up to 50 percent do not return to work in the first year after discharge. Children, similarly, face a diverse array of complications secondary to their critical illness. These may affect almost every aspect of a growing child, including psychosocial development and behavior, organ system maturation, and changes in participation at school and play as well as effects on the family.
At UPMC, patients and family members are turning to the Critical Illness Recovery Center (CIRC) for adults and the Critical Illness Recovery Center for Children (CIRCLE) where they receive individualized longitudinal outpatient care—and in-patient for children—tailored to their specific PICS symptoms.
Critical Illness Recovery Center
Dr. Butcher was an early proponent of post-ICU guided recovery care. He advocated for and in 2018 co-founded the UPMC Critical Illness Recovery Center (CIRC) based at UPMC Mercy Hospital. Over the past four years, the clinic has seen 364 patients and performed over 735 visits. Services have expanded to include virtual weekly support group meetings and one-on-one telemedicine appointments. Patients seeking an in-person evaluation benefit from consultations with a respiratory therapist, physical therapist, occupational therapist, speech language pathologist, pharmacist, and nurse practitioner/clinician specialized in palliative care.
“We opened one of the earliest ICU recovery centers in the country and have seen our patient base expand dramatically over the last four years. What’s cool is the reach and recognition gained by our center,” said Dr. Butcher. “Our team of therapists and clinicians in Pittsburgh are leading the way nationally in this relatively nascent field of critical illness recovery.”
The CIRC sees local patients from UPMC Magee, UPMC Presbyterian, and the COVID-19 clinic. Dr. Butcher says the CIRC support group has also drawn post-ICU survivors from across the country who have heard about CIRC but don’t have an equivalent center near their homes. He is working to expand CIRC’s collaborative effort to include physical medicine and rehabilitation (PM&R) and hopes to soon add a psychiatrist with PM&R subspeciality expertise.
Critical Illness Recovery Center for Children
“We wanted to know the best time to start PT and OT during a child’s stay in the pediatric ICU (PICU) in order to minimize cognitive declines and physical changes,” said Ericka Fink, MD, MS, who is an associate professor of Critical Care Medicine and Pediatrics and is the director of the Critical Illness Recovery Center for Children at UPMC Children’s Hospital of Pittsburgh. “We brought together an amazing collaborative team across many disciplines that set us on a path to develop programs for CIRCLE. Plus, we learned a lot from Brad’s successful implementation of adult clinic.”
Dr. Fink explained that a chart-review study in 2013 of children in the PICU for three or more days found underuse and inefficiencies of inpatient physical therapy (PT) and occupational therapy (OT) at UPMC Children’s Hospital of Pittsburgh. Only 30% received PT and/or OT and 77% of those children were recommended for outpatient therapies.
A subsequent PCORI-funded multi-center study showed that ICU-based PT, OT, and speech and language therapy was relatively safe, feasible, and acceptable to multiple stakeholders to deliver to pediatric neurocritical care patients compared with usual care. The experience gained by investigators as they helped parents grasp the dynamics of a research study allowed for a determination of the outcomes most important to families such as emotional capacity, family quality, or activities of daily living. These studies were a catalyst for the formation of the Critical Illness Recovery Center for Children in 2018.
More than five years later, the programming offered by CIRCLE includes:
- Weekly PICU multidisciplinary rounding to address current and future recovery
- PICU guidelines for PT and OT
- Inpatient neuropsychology consultations for return to school
- Longitudinal outcomes program and coordination of follow-up care (made possible by champion benefactors Ann and Mike Popper, contributions by other families, and the UPMC Children’s Hospital Foundation)
Programing coming soon includes expanded educational resources for families and PCPs about PICS-p, creation of a Family Advisory Council, and telemedicine visits to maintain longitudinal follow-ups.
“The CIRCLE program has changed the culture of the pediatric ICU. We first save lives but now we’re also asking: What is the best possible family life for the child and how can we achieve that?” said Dr. Fink.