Key Research Examines Connection Between a Child’s Medical Complexity and Quality Of Life

May 10, 2016

To best treat children with special medical needs, it’s important to assess both their level of medical complexity and their  quality of life to ensure the most positive outcomes.

That is the core finding of unique research recently undertaken by a team at Children’s Specialized Hospital, the U.S.’ leading provider of inpatient and outpatient services to children with special healthcare needs. 

“We used a tool to measure medical complexity, which is a crucial step in delivering the best care,” said Matthew B. McDonald III, M.D., Chief of Special Needs Pediatrics at Children’s Specialized Hospital.

For instance, children with both cerebral palsy and chronic lung disease would be rated on the scale as the most medically complex using a standard algorithm. Typically, the most medically complex kids are dependent on technology and medical treatments to either keep them alive or make their lives better.

Then the researchers compared that level of medical complexity to the children’s quality of life using questionnaires administered to more than 220 patients and parents over a one-year period.

“We asked questions about not only their physical quality of life -- for example, whether they can walk independently -- but also asked about social aspects like interacting with friends,” said Dr. McDonald. “We found a definite relationship between medical complexity and quality of life especially physical functioning. We also observed a decrease in the social functioning of medically complex kids and their siblings. ”

However, there were some key differences in the way parents and children perceived the patients’ quality of life.

“The kids and their parents didn’t necessarily agree, or they valued different quality of life indicators,” said Dr. McDonald. “These kinds of differences are important for us to note as physicians and caregivers as  we strive to best  tailor the care we administer so we can create the most positive outcomes for our patients.”

The research findings will be delivered at two influential pediatric medical conferences this spring – the Eastern Society for Pediatric Research in Philadelphia in March and the Pediatric Academic Societies (PAS) meeting in Baltimore April 30 to May 3. PAS is an international gathering of thousands of pediatricians and other health care providers working to improve the health and well-being of children worldwide.

Children’s Specialized Hospital is the nation’s leading provider of inpatient and outpatient care for children from birth to 21 years of age facing special health challenges — from chronic illnesses and complex physical disabilities like brain and spinal cord injuries, to developmental and behavioral issues like autism and mental health. At thirteen different New Jersey locations, our pediatric specialists partner with families to make our many innovative therapies and medical treatments more personalized and effective...so children can achieve more of their goals.  To help, or find more information: call 888-CHILDRENS; visit www.childrens-specialized.org; Facebook: www.facebook.com/childrensspecialized; Twitter: www.twitter.com/childrensspecnj; YouTube: www.youtube.com/cshnj; LinkedIn: www.linkedin.com/company/children's-specialized-hospital