Introduction
As technology advances, medicine has become better equipped to extend the life expectancy of individuals who have complex medical conditions. Children with conditions such as hearing impairment, seizures, and extreme prematurity are living with technology that can be both life-sustaining and life-enriching. EMS physicians and prehospital personnel must be familiar with this technology in order to better care for the patients they encounter.
According to a recent data query from the Child and Adolescent Health Measurement Initiative, the percentage of children with special needs is on the rise. In 2001, only 12.8% of children in the nation were defined as having “special needs.” This number increased to 15% in 2013 [1]. Not only are these children increasing in numbers, they also have significant increases in the number of hospitalizations and percentage of hospital days and charges when compared to children without special health care needs. For example, one study showed that this population had an increase in hospitalizations of over 19% from 2004 to 2009, and accounted for 81.7% of the hospital days for all children admitted at 28 children’s hospitals across the country [2].
One study that reviewed hospital discharges from a large pediatric tertiary care center found that 41% of all patients sent home relied on some form of technology. For children included in this retrospective cohort, the most common medical devices were gastrostomy or jejunostomy tubes (10%), central venous catheters (7%), medication nebulizers (7%), ventriculoperitoneal cerebrospinal fluid shunts (2%), and tracheostomies (1%) [3].
As this population has grown, there has also been a growing interest in how best to care for these children in the prehospital setting. While focused training programs specifically designed to deal with these patients have been conducted and studied, it is still unclear whether or not they provide a true benefit to either the prehospital provider or the patient. One study reviewing such training programs noted that even in children with special health care needs, simple Basic Life Support (BLS) procedures were much more common than advanced procedures [4]. Such research points out that despite these children’s complex conditions, BLS is likely all that is needed during their prehospital care.
While caring for these children, it is important to recognize that the medical and technological complexity of their conditions may greatly compound the likelihood for medical errors to be made. These potential errors range from simple to complex. Something as simple as forgetting to transport a patient with his or her required equipment could pose great problems, not just during the child’s transport but also upon arrival at the health care facility. Of course, more complex errors can be made, such as the failure to distinguish between an obstructed tracheostomy and a ventilator malfunction [5]. Though BLS is what is needed to manage most technology-dependent children in the prehospital setting, familiarity with how to manage common situations in this population is essential for both EMS physicians and field providers.
The caregiver as a resource and the emergency information sheet
A family member and/or home nurse care for the vast majority of children with special health care needs at home. As such, supplies for their routine care are usually present in the home, and caregivers have a great deal of knowledge with regard to both the child’s medical issues as well as the maintenance and routine functioning of their medical devices. It is essential to recognize the family member and/or caregiver as a vital resource during the prehospital care and transport of these children. However, at least one study showed that over half of caretakers at a specialty clinic visit were unable to report some of the child’s specific diagnoses, and almost 30% could not provide a list of medications. Interestingly, in this same study of 49 caregivers, none of the children wore any medical identification jewelry [6]. While primary caregivers should be considered as the first source for information regarding the child’s care and accompanying medical technology, EMS agencies should also engage with their local hospitals to facilitate the exchange of health information for transported patients.
As a result of this potential lack of information on the caretakers’ part, especially in times of stress or in their absence, both the American Academy of Pediatrics and the American College of Emergency Physicians have endorsed the use of an emergency information form for children with special health care needs. In addition, many states ask parents to place one in the freezer of the child’s home, so that they can be located quickly and easily in the event of a medical emergency. Even when parents are home, the prehospital provider should ask about the emergency information form and verify that it is up to date, since the parent may not be the primary caregiver and/or the person with the child may be distracted in the midst of an emergency situation [7,8].
