Meet Our Medical Advisory Board Member Dr. Sarah Sobotka

“My hope is that what I bring to DSCC… are the data points that help to drive advocacy and improvements in care.”

Dr. Sarah Sobotka first started working with the Division of Specialized Care for Children (DSCC) through her research to improve support for children with mechanical ventilators and their families.

“I have been working with DSCC as a critical partner in my research program since 2017,” she said, noting how DSCC helped recruit eligible families for her research studies.

“I am so fortunate to have had the enthusiastic support from DSCC because our missions are so aligned and from a research standpoint, it allows me to work with a state agency that lacks the bias of a single hospital center or a single institution… it is a more balanced sample, working with the entire state.”

Sobotka and DSCC share the same goal to better understand the needs of children with medical complexity and connect their families with the right services and support to achieve their best quality of life.

In 2020, DSCC’s leadership invited Sobotka to join our Medical Advisory Board as an expert medical provider.

Her research and expertise provide valuable perspectives on how to best allocate resources and improve systems of care for all Illinois children and youth with special healthcare needs.  

An early focus on children with medical complexity leaving the hospital

Sobotka is an Associate Professor of Pediatrics, Section of Developmental and Behavioral Pediatrics, and Ambulatory Medical Director of Comer Developmental and Behavioral Pediatric Programs in the Department of Pediatrics at the University of Chicago.

She became interested in children with medical complexity while completing her residency.

“I did my pediatric residency, and then I elected to do a developmental and behavioral pediatric fellowship in order to focus on the diagnosis and support of children with disabilities and their families,” Sobotka said.

She quickly saw how long children with medical complexity and undiagnosed disability spent in the hospital.

“I recognized early on that an impediment to their flourishing and to their families’ functioning was the length of time they were in the hospital,” she said. “So, some of my early work focused on that process of discharge and the many components that have to get together in order for a child with medical complexity, particularly kids with ventilators, to leave the hospital.”

As part of Dr. Sobotka’s training, she took an additional year between her third and fourth year of medical school to complete a Master of Science for Clinical Professionals. This advanced degree gave her training in epidemiology and research.

Sobotka’s research focus has explored what happens after children with complex medical needs leave the hospital, what the home nursing landscape looks like and what individual families’ experiences and needs are.

One of Dr. Sobotka’s first research studies involved interviewing DSCC Care Coordinators, skilled private duty nurses, and parents of children in the Home Care Program who came home with a ventilator.

“I interviewed those parents a couple of times after going home, so I really started to understand the complexity of home care challenges and what that looked like for families,” she said.

This research project identified gaps in therapy services for these children, and Sobotka developed interventions to support their diverse disabilities. She also learned more about how DSCC Care Coordinators support families and what motivates and challenges professionals in this important role.

Improving the healthcare system’s efficiency

Over the last seven years, Sobotka has continued to partner with DSCC on multiple studies. Recent projects include:

• “Disparities in Home Nursing and Hospital Length of Stay for Children with Invasive Mechanical Ventilation: Identifying National Trends and Piloting a Parent-to-Parent Intervention”
  • This study includes a parent-to-parent coaching pilot program for families. This pilot program is for families who have a child on a ventilator in the hospital and are awaiting home nursing so their child can be discharged home or have gone home and do not have enough home nursing support.
    
• “Let’s E.A.T! (Eating with Assistive Technology)”
  • This study aims to help children with feeding tubes and tracheostomies (trachs) eat by mouth. It is for families who have a child under 3 years old with a feeding tube and trach.

You can read more about these studies on pages 35 and 36 of our FY 2024 Annual Report.

A major theme in Sobotka’s work is improving the healthcare system’s efficiency so that all children, especially those with medical complexity, spend more time in the least restrictive environment at home with their families.

“This ultimately has the greatest potential to improve their developmental trajectory, because although this is a population at high risk for complex disability, I still believe there are opportunities to mitigate the worst disability outcomes with the right interventions at the right times,” Sobotka said.

Sobotka says families’ experiences and feedback direct the course of her research.

As a Medical Advisory Board member, Sobotka enjoys the opportunity to collaborate with other members to advocate for parent caregivers. She also aims to keep families’ needs and priorities at the center of decisions and improvements in the healthcare system.

“My hope is that what I bring to DSCC and also to other investigators, clinicians, and families are the data points that help to drive advocacy and improvements in care,” she said.

Thank you, Dr. Sobotka, for your dedication to improving the lives of children with complex medical needs and their families!