Care for Children with Medical Complexity

David Sandweiss, MD, Pediatric Emergency Medicine

University of Utah and Primary Children's Hospital

Excerpts from September 12th PETOS

Children with medical complexity (CMC) are those with significant chronic health problems. They may have multiple organ system involvement or major functional limitations. They may need substantial health services. In the past decade, U.S. hospitalizations for these children have increased by 33%.

"The Golden Tip" of caring for a child with medical complexity: parental wisdom or knowledge is gold. They know their child, their child's baseline, and vitals. Trust them!

Even if you haven't before, you may start caring for these children more often. Nationally this population is increasing.

• Medical advancements are leading to better survival rates
• Medical technology advances allow these children to live more often at home, school, and within the community
• More support services (less insurance coverage) lead to more community based care

Common chronic conditions you may run into:

• Respiratory
• Cardiovascular
• Gastrointestinal
• Neurological/neuromuscular
• Metabolic
• Immunologic/infectious
• Behavioral

• Lung diseases
• Muscular/skeletal > weakness
• Neurologic diseases > poor effort/weakness
• Airway diseases that limit airflow

Decompensating on a mechanical ventilator may prompt a call to EMS (especially at school or away from the parent).

The DOPE mnemonic is the gold standard for trouble shooting a vent.

• Displacement—starting at the patient, check the trach or ET tube position
• Obstruction—look for patency of the tube
• Pneumothorax—pressures from the vent can blow a pneumo; assess for unequal breath sounds or chest rise
• Equipment failure—Check all connections from the patient to the machine to the plug in the wall.

If your assessment doesn't reveal the cause and decompensation continues, it's best to disconnect from the machine and manually bag through the trach.

Central line tips for EMS

• Unless it's life or death, do not use these tubes, establish your own peripheral line.
• If the tube is leaking or broken, do not pull it out. Clamp above the break toward the patient and cover the hole or broken end with a sterile gauze.

• Nasogastric tube (NG tube) inserted through the nose to the stomach
• Nasojejunal tube (NJ tube) inserted through the nose to the intestine (done by fluoroscopy)
• Percutaneous endoscopic gastrostomy (PEG) inserted directly into the stomach through the belly

G-tube tips for EMS

You won't often be called to a scene for a primary G-tube problem. If you are, it tends to be because the tube has been pulled or has popped out. Parents are trained to replace a nasogastric tube and usually won't involve EMS. Nasojejunal tubes must be replaced by a radiologist.

Occasionally EMS may be involved when a PEG (or MIC) tube pops out of the belly and the parent can't replace it. The important thing to remember is that stoma (the hole through the abdomen into the stomach) is surrounded by muscle and it can close very quickly. If closed, the child will need surgery to replace it. Our priority is to keep that hole open. Inserting a small, place-holding tube into the stoma is often the EMS providers best option. Using an 8fr suction catheter or similar tube, lube the end and gently insert the tube into the stoma about 1 inch. Tape it in place. This is a clean, not sterile procedure. Do not force it but gentle pressure and a twisting motion can help relax the muscles.

Zoom link

BEMSP is inviting you to a scheduled Zoom meeting.

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Barriers and enablers to recruiting for the PECC role in EMS agencies

More than 80% of EMS agencies see fewer than eight children per month. As a result, many EMS professionals may have limited pediatric-focused education opportunities and infrequent encounters with children. In 2007, the Institute of Medicine recommended EMS agencies designate a pediatric emergency champion, or pediatric emergency care coordinator (PECC), to support the care of children. The PECC oversees pediatric quality improvement initiatives, provide skills-based pediatric training to agency staff, and ensure pediatric medications, equipment, and supplies are available.

To identify best practices to increase the percentage of EMS agencies with PECCs—which is a performance measure for the EMSC Program’s 58 State Partnership grantees—the EMSC Innovation and Improvement Center hosted a 6-month PECC Learning Collaborative (PECCLC). Findings from the PECCLC were published last month in the journal Prehospital Emergency Care.

The PECCLC engaged 9 states (Connecticut, Kentucky, Montana, New Mexico, New York, Ohio, Pennsylvania, Rhode Island, and Wisconsin). State representatives participated in virtual monthly learning sessions with subject matter experts and support staff as well as a 2-day in-person meeting.

PECCLC outcomes

Outcomes of the PECCLC showed that during the 6-month collaborative, state representatives recruited 341 PECCs (92% of predetermined recruitment goals). During the 5 months after the collaborative, 184 more PECCs were recruited for a total of 525 PECCs (142% of goal). State representatives and PECCs reported the biggest barriers to PECC recruitment were:

• competition from other EMS responsibilities,
• budgetary constraints,
• lack of incentive for agencies to create the position, and
• lack of requirement for establishing the role.

On the other hand, the biggest enablers were:

• an EMS agency recognition program that includes the PECC role,
• train-the-trainer programs, and
• inclusion of the PECC role in agency licensure requirements.

Interviews with PECCs identified the most common activity associated with their role was pediatric-specific education and the most important need for PECC success was agency-level support.

“Long-term PECC recruitment and retention may be possible through local and national EMS agency support, and the continued development of and outreach to interested individuals in prehospital pediatric care,” says Hoi See Tsao, MD, MPH, an assistant professor of Pediatric Emergency Medicine at UT Southwestern Medical Center who serves as the Prehospital Domain EMSC Fellow and is the publication’s lead author. “Future work includes investigating other methods and outreach efforts to further increase the number of PECCs in addition to the use of learning collaboratives. This may provide insight into additional effective ways to increase the number of PECCs and best practices, and ultimately improve the prehospital care of children.”

EMSC-funded studies—including Targeted Issues grant projects in North Carolina, Connecticut, Rhode Island, Colorado, and Louisiana—are evaluating the effects of EMS agency PECCs on patient care. The National Prehospital Pediatric Readiness Project is supporting EMS agency pediatric readiness efforts with a publicly available toolkit containing more than 100 resources, including resources developed by the PECC-focused Targeted Issues grant in Connecticut, which is led by Mark X. Cicero, MD.

Access prehospital resources

Learn more about targeted issues grants

Pediatric Education for the Prehospital Provider

Register online at www.peppsite.com. Look up classes in Utah and find the one that works for you. Once you find the class, go to jblearning.com, and look up pepp als in the search tool. Purchase the number ($21.95). Return to peppsite.org to register for the class and follow the prompts.

If you have any questions, please email Erik Andersen at erikandersen@utah.gov or text/call 435-597-7098. Continue to watch the website for additional classes.