It started with one patient and one call. And over the last several years, the STARS (Special Needs Tracking and Awareness Response System) program has grown and impacted hundreds, if not thousands, of lives. Patricia Casey, EMT-P, is a champion for children with special healthcare needs within the St. Louis region, and she developed STARS after identifying a need at the EMS service where she worked.
Casey built the program with several partners while working full time as a paramedic/lieutenant at Rock Township Ambulance District. As a mother of a child with special needs, she recognized the pitfalls EMS could run into when called to care for children in this community. The program proved successful and was quickly adopted by SSM Health Cardinal Glennon Children’s Hospital in St. Louis. Soon after, Casey left her full-time position on the ambulance to follow STARS to help it reach its full potential, and she took on the position of STARS program coordinator at Cardinal Glennon.
The program consists of several different components including a registry, pre-arrival instructions, patient specific protocols, meetings between patients and EMS providers, and training. One big factor in the success of STARS is that it makes every attempt to provide training and place emergency information in the hands of EMS providers prior to an emergency taking place. It’s considered unique in that it works with specialty clinics, ED pediatricians and EMS combined to create the most comprehensive emergency plan possible for each child.
“We strongly encourage EMS to visit the homes of the children or invite them up to the base so they can spend time with them on a good day,” Casey says. “The design of having children meet EMS providers was originally put in place with the intention of decreasing anxiety on the part of the kids. However, after four years we’ve yet to discover a child who shows any hesitancy to interact with the paramedics…The hesitancy has been on the part of the paramedics. Watching them warm up to the kids and bond with them is heartwarming.”
The registry is designed so when someone with a child with special healthcare needs calls 9-1-1, they have been pre-identified within the EMS system by a unique STARS identifier. This identifier is linked to patient-specific information and is based on the Emergency Information Form for Children with Special Needs from the American College of Emergency Physicians and American Academy of Pediatrics.
Although this form housed valuable information, Casey found that the handwritten forms were at times difficult to read and didn’t always take EMS scope of practice into consideration, so she created a new form that focuses on the prehospital provider. Under Casey’s guidance, the forms have now transitioned to an easily accessible database that allows both prehospital and hospital ED providers to access time-critical information.
Besides baseline information and historical data, the electronic database serves as patient-specific protocols which are reviewed by each service’s medical director. As these are children with special healthcare needs, it’s not uncommon for them to have conditions which fall outside of traditional EMS protocols or could be exacerbated by following traditional EMS protocols. “Each and every child in our program is unique, which is why programs like STARS become imperative to keep them safe in emergency situations. There is no ‘general’ special needs education that can cover the enormously broad spectrum of children we work with,” Casey says.
The last component of the STARS program is training. Two years ago, while doing general EMS outreach for SSM Health Cardinal Glennon Children’s Hospital, Casey found that 62% of paramedics had never received training on tracheostomies. This finding confirmed her suspicion of why several local children with tracheostomies had died or suffered permanent neurological devastation from mismanaged airway emergencies while in the care of EMS. This information, combined with her devotion to children with medical complexities, fueled a mission to educate as many providers as possible. Since 2014, over 1,000 providers, including paramedics, nurses and physicians, have received emergency tracheostomy care training. This training initiative, which has been taken anywhere from flight services to school nurses, has decreased the number of out-of-hospital trach incidents significantly.
Because of STARS, the care of children with special healthcare needs has improved in the St. Louis region and provider anxiety and apprehension while caring for these children has been reduced because of increased training and familiarity. The program has gained national attention, and hospital systems and medical directors around the country are visiting and looking to find ways to bring STARS to their cities.