Innovative Clinic Studying New Ways to Care for the Most Fragile Children


AUSTIN, Texas – (Feb. 22, 2013) – Ascension Seton is taking steps to reinvent the way health care is delivered through innovative pilot programs. One of these targets the most fragile population-kids with complex chronic conditions-and is embodied in a new kind of primary care clinic (medical home) called the Children’s Comprehensive Care Clinic of Dell Children’s Medical Center of Central Texas.

CCCC_pic_stockThe innovative Clinic is designed for medically fragile children who make up roughly 1 to 3 percent of the pediatric population but account for 30 to 40 percent of pediatric care costs to the community. These children often have multiple health issues, complex medication regimens and use medical devices and other technology for their ongoing care.

Innovations offered under one roof include use of telemedicine to connect specialists in one visit (versus the family traveling to multiple physician appointments), access to holistic care (psychosocial support) for the child and family and programs to facilitate child/family education and community living.

“For children with chronic diseases and the families that care for them, our current health care system is fragmented, inefficient and very costly,” said Rahel Berhane, MD, pediatric gastroenterologist at ‘Specially for Children and co-investigator for the Clinic. “The stress on the family to properly care for the child while managing the rest of their family’s needs is compounded by a system that is insufficient or frustrating to navigate.”

The Clinic currently operates within the framework of a randomized clinical trial (research study) to test this new model of care versus the current care model. Families randomly selected for the Clinic portion of the study receive all of their child’s primary care at the Clinic and, if the child is hospitalized at Dell Children’s, the Clinic facilitates continuity of care, ensuring their care is connected back to the medical home. The family-centered approach also helps families coordinate and monitor their child’s medical, dental, behavioral and developmental care.

“As a parent, the stress of managing the frequent doctors’ and hospital visits can be overwhelming,” said Aide Lara Benson, whose 8-year old son, Christopher, is enrolled in the study. “This clinic brings peace of mind. When it’s Sunday evening and something is going wrong, I know I can call them, and someone that knows us-knows our whole family-will call back. Then we won’t have to go to the ER. Their responsiveness in caring for our entire family has been life changing.”

Children with complex chronic conditions are served in the same health care model designed for “typical” children, yet, they have drastically different needs. Many of these children require regular infusions, special diets, a variety of medical specialists and mobility devices such as a wheel chair or walker. They may visit the emergency department multiple times in a month, are frequently hospitalized and require a parent or other caregiver to provide round-the-clock care. Maternal depression and emotional impact on the siblings are not uncommon in families with children with complex chronic conditions.

“Caring for kids with chronic diseases is almost never comprehensive and needs such as pain-management, sleep-management and counseling are inconvenient or non-existent,” remarked Don Furman, MD, member of the Ascension Seton Board and key architect for the Clinic. “This innovative model provides wrap-around care for children and families that have largely been ignored by our current health care system.”

The pilot intends to enroll up to 300 eligible children with complex chronic conditions into the study. Children will be randomized into one of two groups, either the Clinic, where patients will be given comprehensive care under one roof, or the control group, where patients will maintain their existing care regimen with no clinical intervention from the Clinic.

Early study evidence has shown a 50 percent reduction in the rate of emergency department visits for the Clinic patient group versus the control group after enrollment. Study investigators are also collecting data that they believe will show that the new delivery care model will lead to lower costs and decreased utilization than the current model, while also improving families’ quality of life.

“The hardest part of this pilot study is to tell a family they have been randomly selected for the control group,” commented Berhane. “These families are desperate for a better health care delivery system.”

About Ascension Seton’s Clinical Design and Innovation Center

The Children’s Comprehensive Care Clinic of Dell Children’s Medical Center is one of several pilot programs under Ascension Seton’s Clinical Design and Innovation Center. As Ascension Seton embarks on this new era of healthcare delivery and transformation, the Clinical Design and Innovation Center will become a locus of innovative discovery, design, and development, and serve as the incubator of new ideas, new care models, new processes, and new products that deliver value for those we serve. Other ongoing programs include Ascension Seton Total Health Partners, Ascension Seton Total Health Transitions and chronic care management clinics for diabetes, asthma, heart failure and chronic obstructive pulmonary disease.