Submit an Idea through the Innovation Lab

Did you know CHOC Children’s has partnered with the Innovation Lab as part of the Innovation Institute to help CHOC caregivers commercialize healthcare product ideas?

Click here for “Turning Your Idea Into a Marketed Medical Device,” by American Association for Physician Leadership.

To learn more contact Suzy Engwall, national director of the Innovation Lab, at 714-234-6349 or at suzy.engwall@ii4change.com.

To learn more about innovation at CHOC, click here.

 

CHOC Leads the Way in Implementing Food Standards for Dysphagia Patients

CHOC Children’s has emerged as a leader in implementing a new global standard for assessing food and liquid consistencies for patients with swallowing difficulties.

CHOC was one of the first pediatric hospitals nationwide to implement the International Dysphagia Diet Standardization Initiative (IDDSI), which aims to establish a standardized system of measuring and labeling the thickness of food and drink.

The goal is to ensure patient safety and improve treatment outcomes, say Jennifer Raminick and Danielle Monica, two CHOC speech language pathologists who spearheaded the system’s adoption.

Established in 2013 by a group of dysphagia specialists, IDDSI was created to standardize descriptions, consistencies and terminology for diet modifications for patients of all ages, locations and cultures.

The initiative is a marked departure from previous guidelines that relied on ambiguous labels and descriptions that often varied across institutions and providers, and required specialized, arcane equipment to measure food consistency.

IDDSI framework indicators and descriptors.
(c) The International Dysphasia Diet Standardisation Initiative 2016 @http://iddsi.org/framework/.

Conversely, IDDSI guidelines are simple and clear; testing is easy and takes 10 seconds or less; and testing tools are easily accessible to providers and at-home caregivers, Danielle and Jennifer say.

Here’s a brief explanation of the flow testing process to assess a liquid’s thickness: Cover the spout of a 10-mL syringe and fill it with the liquid. With a stopwatch in hand, open the spout for 10 seconds, and then stop the flow. The amount of substance remaining in the syringe is then compared to a rubric to gauge its consistency.

If 1 to 4 mL of the substance remains in the syringe, it is considered of “slightly thick”; 4 to 8 mL remaining is considered “mildly thick”; 8 to 10 mL is “moderately thick” or liquidized; and a substance with 10 mL remaining is “extremely thick” or pureed.

Beyond those categories, food is assessed and labeled as, “liquidized” “pureed” “minced and moist,” “soft and bite-sized” or “regular.” These categories are determined by how the food flows off a spoon or fork, or by measuring a food particle against a ruler.

To implement the program house-wide, the rehabilitation services team partnered with several other departments and disciplines.

Jennifer and Danielle worked with CHOC’s Clinical Nutrition and Lactation department as well as the food service team to create a specific menu for dysphagia patients. It included limited options for each level of consistency and easy-to-follow recipes with three ingredients or less. All food is made from scratch.

The rehabilitation services team developed curriculum for multi-level education of current and new dysphagia therapists, physicians, nursing, dietitians, and food service staff members.

Learn more about rehabilitation services at CHOC.

CHOC Heart Patients Among First to Experience Clinic of the Future

A pilot program at CHOC Children’s is giving cardiac patients and their families more peace of mind. Launched by pediatric cardiologist and CHOC’s chief intelligence and innovation officer Dr. Anthony Chang, the CHiP (Cardiopulmonary Health intelligence Program) clinic provides home monitoring equipment to families for the purpose of tracking patients’ vitals, such as blood pressure and oxygen saturation. Through telepresence, families can also connect with their physicians without leaving their homes.

Dr. Anthony Chang
Dr. Anthony Chang, pediatric cardiologist and chief intelligence and innovation officer at CHOC Children’s

“Patients and families feel more comfortable outside the clinical setting. But when away from the hospital, parents can feel very anxious about their children’s health and well-being,” explains Dr. Chang. “Our CHiP clinic ensures continuity of care, while providing great comfort to parents who know they can connect with their physicians without visiting their offices.”

CHiP is based on another innovative idea from Dr. Chang: the iClinic. According to Dr. Chang, the iClinic is a philosophy of leveraging emerging technologies to help create efficiencies, improve workflow and the continuity of care for patients by bringing CHOC expertise to patients’ homes.  The ultimate goal is improving quality care and positive outcomes for patients.

CHOC Children's Heart Institute

There are five key components of the iClinic, all starting with the letter “I”:

  • Instantaneous – Instead of periodic measurements at home, monitoring devices can measure at any time.
  • Intermittent – Instead of being limited to scheduled visits, virtual visits can happen at any time. These virtual visits can include educational sessions, in addition to wellness checks.
  • Individual therapy – Precision medicine is built into the iClinic, including genomics and pharmacogenomics, to find the medicine or treatment best suited for the patient.
  • Intelligent data-driven medicine – All data is compiled and analyzed to make the best possible decisions, including personalized medicine and drug discovery.
  • Intuitive interactions – Through telepresence and the ability to provide instantaneous data with feedback, the iClinic contributes to an experience that feels authentic and intuitive.

Dr. Chang envisions rolling the “clinic of the future” to other specialties at CHOC, beyond CHiP.

“This is the clinic of the future. It is inclusive of wearable devices, avatars, artificial intelligence and genomic medicine. But it’s important to note we’re not using the technology for the sake of just using fancy gadgets.  We are leveraging emerging technologies to really change how we deliver care in the best possible way,” explains Dr. Chang.

Providers who are interested in piloting a similar program at their institutions are free to contact Dr. Chang at achang@choc.org.

ROSA Robot Assists in CHOC Patient’s Successful Epilepsy Surgery

Five-year-old Ian Higginbotham recently enjoyed his best summer yet.  He experienced his first family vacation. He learned to swim and ride a bike. He got himself ready for kindergarten.  These are milestones most kids and parents, alike, eagerly welcome.  But there was a time when Ian’s parents weren’t certain their son, who was born seemingly healthy, would enjoy such happy pastimes.

Ian began talking and walking in his sleep as a toddler.  When the episodes, including night terrors, increased in frequency and severity, his mom Lisa made an appointment with the pediatrician.  One day, Lisa knew something just wasn’t right and didn’t want to wait for the appointment to get Ian checked out.  She and her husband Derek took him to the Julia and George Argyros Emergency Department at CHOC Children’s Hospital.  To her surprise, doctors diagnosed her son with epilepsy.    Ian’s “sleepwalking” and “night terrors” were actually seizures.

The family was referred to CHOC’s comprehensive epilepsy program.  A national leader in pediatric epilepsy care, CHOC’s comprehensive epilepsy program offers cutting-edge diagnostics, innovative medical approaches and advanced surgical interventions.  CHOC was the first children’s hospital in the state to be named a Level 4 epilepsy center by the National Association of Epilepsy Centers, signifying the highest-level medical and surgical evaluation and treatment for patients with complex epilepsy.

CHOC Children's

Ian’s neurologist Dr. Andrew Mower suspected he was experiencing complex partial seizures, which was confirmed by video EEG monitoring.  Complex partial seizures start in a small area of the temporal or frontal lobe of the brain, and quickly involve the areas of the brain affecting alertness and awareness.  The pattern of Ian’s seizures suggested they were originating from the right frontal lobe.  Dr. Mower knew Ian and his family were in for a tough journey.

“I really don’t think the general public understands the impact epilepsy has on a child and his family.  Its effects are multifaceted and extensive.  Our team’s goal is to reduce or eliminate our patients’ seizures, helping improve their quality of life,” explains Dr. Mower, who placed Ian on a series of medications.

The medications reduced Ian’s seizures, but did not control them.  Dr. Mower was concerned about the seizures affecting Ian’s development, and presented his case to the epilepsy team.   The multidisciplinary team agreed Ian was a candidate for epilepsy surgery.  For children who fail at least two medications, surgery may be considered early in treatment versus as a last resort.  Surgery can result in an improvement in seizure control, quality of life, and prevent permanent brain damage.  Ian’s surgery was going to be performed by CHOC neurosurgeon Dr. Joffre Olaya.

While the thought of surgery was frightening to Lisa and her husband, they were confident in the team and comforted to know their son was going to benefit from innovative technology, like the ROSA™ Robot. Considered one of the most advanced robotized surgical assistants, ROSA includes a computer system and a robotic arm.  The computer system offers 3D brain mapping to aid surgeons in locating the exact areas they need to reach and planning the best surgical paths.  The robotic arm is a minimally invasive surgical tool that improves accuracy and significantly reduces surgery/anesthesia time.

Dr. Olaya used ROSA to accurately place electrodes in the area of Ian’s brain suspected to be the source of his seizures.  By using the robot, Dr. Olaya avoided performing a craniotomy.

“ROSA is an amazing tool that yields many benefits for our patients, including less time under anesthesia in the operating room.  It reduces blood loss and risk of infections.  Patients tend to recover faster than they would if they had craniotomy,” says Dr. Olaya.

Lisa was amazed at the outcome. “I couldn’t believe how great Ian looked after the placements of the electrodes with ROSA.  He wasn’t in any pain, there was no swelling.  It was wonderful!”

She and her husband were also amazed at how well Ian did following his epilepsy surgery.

“We got our boy back,” says Lisa. “There were no more side effects from medication and, more importantly, no more seizures!  He started developing again and doing all the things a child his age should do.”

Ian’s care team isn’t surprised by his recovery.

“Children are resilient, and their brains are no different.  In fact, the plasticity of a young brain allows it to adapt to changes and heal more easily than an adult brain,” explains Dr. Mower.

Learning to ride a bike and swim were among the first of many milestones Ian quickly reached following surgery.  He enjoys playing with his younger brother and his friends.  And, whether inspired by his experience with ROSA or not, Ian loves robots.

CHOC Specialists Discover New Metabolic Condition

CHOC Children’s metabolic disorders division has discovered a previously unreported condition that could provide answers for parents of children experiencing unexplained liver failure.

Led by Dr. Jose Abdenur, the division’s medical director, the team has coined the genetic condition Mitochondrial Transcription Factor A (TFAM) deficiency and has published its findings this month in the journal Molecular Genetics and Metabolism.

Dr. Jose Abdenur
Dr. Jose Abdenur in the metabolics lab at CHOC.

The condition affects mitochondria, the energy-producing part of cells. If this transcription factor, a protein that binds to mitochondrial DNA, isn’t working, the body cannot maintain its mitochondrial DNA, which is essential to creating energy.

The infant patient described in the paper died from liver failure as a result from the mitochondrial DNA depletion. Subsequent testing concluded that her older brother also died previously from the same cause at 2 months of age.

Patient history

The 12-week-old patient presented at CHOC in 2015 after her newborn screening detected elevated levels of tyrosine, an abnormality that may indicate liver disease.

Blood tests revealed elevated liver enzymes, abnormal bilirubin levels and low blood sugar levels. She was soon diagnosed with cirrhosis.

CHOC worked with UCLA to perform whole exome sequencing of the patient. The laboratory found two mutations on TFAM, a gene that had never previously been associated with human disease. However, previous studies had shown that a mouse model with mutations in this gene developed lethal mitochondrial depletion.  This information was a clue to pursue research studies at CHOC’s laboratory in the patient’s fibroblasts for energy metabolism, which proved the pathogenicity of the mutation.

Additional molecular testing found the same homozygous variants in blood samples from the deceased sibling. While this genetic work was underway and about 10 days after the baby’s original admission to CHOC, the patient’s condition deteriorated further.

The team deemed the patient an unsuitable transplant candidate due to her condition being multisystemic. Because her liver had deteriorated so significantly and her muscles were also becoming affected, her family, in agreement with clinicians, opted not to pursue further heroic measures. They received palliative support care and the baby died at about 4 months old.

Future impact

Though this discovery will not bring back their children, the family is grateful to CHOC for providing answers and is hopeful that the discovery will lead to early diagnosis and treatment of this condition in other infants.

Dr. Abdenur expects the discovery and publication will lead liver centers to look at their samples for mitochondrial defects. CHOC’s team will also continue to work on the cells to potentially develop an experimental treatment in the future.

The full paper can be read in the journal Molecular Genetics and Metabolism.