A program at UPMC Children’s Hospital of Pittsburgh provides support after a child is discharged from the pediatric intensive care unit (PICU). Known as the CIRCLE program, it helps families dealing with post-intensive care syndrome in pediatrics, or PICS-p.
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What Is PICS-p?
PICS-p is a group of cognitive, physical, and mental health challenges that occur in childhood patients after PICU discharge.
Families of children who spend time in the PICU often need support even after leaving the hospital.
Surviving trauma or critical illness isn’t easy, and children may face both physical and emotional challenges well after discharge.
As outpatient recovery begins, children may feel anxious, depressed, and overwhelmed with medical needs, school, and social responsibilities while working through the emotional trauma of hospitalization.
Doctors call this PICS-p.
What Are the Signs of PICS-p?
Children with PICS-p may experience new or worsening cognitive, emotional, and/or physical symptoms. These symptoms may continue for weeks, months, and even years after hospitalization.
Some signs of PICS-p include:
- Worsening memory, or forgetfulness.
- Trouble problem-solving or concentrating.
- Difficulty talking.
- Anxiety, depression, and/or decreased motivation.
- Nightmares, or persistent unwanted thoughts.
- Muscle weakness, fatigue, or reduced mobility.
- Trouble breathing.
- Insomnia or changes to sleep patterns.
How UPMC’s CIRCLE Program Helps with PICS-p
The CIRCLE program at UPMC Children’s Hospital of Pittsburgh provides care for children and their families who are struggling with the effects of PICS-p.
The program stands for Critical Illness Recovery for ChiLdrEn. It offers screenings and support for PICS-p and helps children safely transition home. The program offers ongoing care for up to a year after discharge.
“As mortality rates in the PICU have gone down over the past 20 years, we’ve realized as a field that we really care about how children are surviving now that we’re able to help them survive,” says Ericka Fink, MD, MS, co-director, CIRCLE. “We want them to have the best quality of life … and we want their families to be equipped and get all the support they need to reach their goals.”
Dr. Fink is co-director of CIRCLE along with Sarah Rubin, MD, MS. Both doctors are a part of the Pediatric Critical Care Medicine Division at UPMC Children’s Hospital of Pittsburgh.
The history of CIRCLE at UPMC Children’s
The vision for CIRCLE started 10 years ago, Dr. Fink says. She considered whether involving physical therapists earlier in some patients’ PICU stays would improve outcomes.
“I had patients who desperately needed help with functioning better, but I didn’t know when to call (physical therapists),” she says.
From there, Dr. Fink and colleagues conducted a three-center trial of physical, occupational, and speech therapy consultations within the first 72 hours of a hospital stay versus seven days. The trial involved children with a variety of neurocritical illnesses, such as brain trauma and cardiac arrest resulting in hypoxic damage.
Once they determined the practice was safe and beneficial, they “gathered this incredible multidisciplinary group of champions together that included physical therapists and speech therapists, as well as our rehabilitation colleagues,” Dr. Fink says.
The group soon began meeting weekly to review each child’s current and future recovery needs during hospitalization.
The program has grown steadily since. The second, and newest, part of the CIRCLE program involves ensuring long-term outcomes for patients beyond hospitalization, says Shannon Snatchko, MSN, RN, former nursing administrator for CIRCLE.
Since being interviewed, Snatchko has left the CIRCLE program. Katie Hayden, RN, BSN, has stepped into the role of CIRCLE Coordinator.
Before doctors release a child from the hospital, their families meet with experts including social workers, nutritionists, and physical therapists. While in the PICU, the CIRCLE program provides weekly multidisciplinary rounds by a range of specialists and screenings for PICS-P.
After going home, the CIRCLE program offers:
- Custom services for children and families at increased risk of PICS-p.
- A post-PICU follow-up appointment to review a child and family’s recovery.
- Outreach via a virtual CIRCLE clinic, with a remote telehealth service in the works.
- Educational resources for a child’s loved ones, doctors, and school.
Snatchko worked alongside Dr. Fink for nine years as a PICU nurse but “never got to see what happened once (patients) left the PICU,” she says.
“We see these kids in their sickest times,” Snatchko says. “I was really excited to transition into this role where we could follow them longitudinally and really get to see them beyond the ICU. I get to meet them in the ICU, introduce them to our program, and really get a rapport with the family.”
Expanding CIRCLE Program Services
Now, CIRCLE specialists are preparing to expand services to more patients. This includes those with sepsis and acute respiratory distress syndrome, “who are spending a longer time in the ICU and are at higher risk for PICS-p,” Snatchko says.
Families are asked to fill out questionnaires to establish baseline cognitive, emotional, and physical functions. This helps track improvements post-injury or post-hospitalization.
“This is certainly a voluntary program, but we offer to follow up with them for up to a year so that we can continue to check in, at least on that first visit in person,” Snatchko says. “A lot of our families have agreed to allow us to virtually follow them beyond three months. We can see them virtually in six months and 12 months as well, or sooner if they feel that’s needed.”
Evidence suggests care is often not well-coordinated after critical illness, Dr. Fink says. CIRCLE aims to take a multidisciplinary, comprehensive approach to recovery.
Jessica Jarvis, PhD, assistant professor, Pediatric Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, is evaluating CIRCLE results. The aim is to improve the quality and create new programs that could support families better. Dr. Rubin is focusing on building on family engagement to help guide CIRCLE’s growth.
“Sometimes, emotional health problems don’t come until later,” Dr. Rubin says. “When a child goes back to school, they might have new behavioral concerns. Or, I had experience with a family where they thought their child was doing fine, but then they had a memory issue.”
Ultimately, Dr. Fink would like to see a hospital-wide program similar to CIRCLE help eliminate barriers and improve long-term outcomes for all UPMC Children’s patients.
“There are certainly patients who have long stays or emotional, physical, or cognitive problems after their hospital stay without touching the ICU,” she says.
To learn more about the CIRCLE program, email CIRCLE@chp.edu or visit our website.
From nutrition to illnesses, from athletics to school, children will face many challenges growing up. Parents often will make important health care decisions for them. We hope to help guide both of you in that journey. UPMC Children’s Hospital of Pittsburgh is a national leader in pediatric care, ranking consistently on U.S. News & World Report’s Best Children’s Hospitals Honor Roll. We provide expert treatment for pediatric diseases, along well-child visits, urgent care, and more. With locations across Pennsylvania, Maryland, and West Virginia, you can find world-class care close to home. We also work closely with UPMC Magee-Womens Hospital, a national leader in care for newborns and their mothers. Our goal is to provide the best care for your children, from birth to adulthood and beyond. Visit our website to find a doctor near you.