Children with special health care needs
Periodically the U.S. Department of Health and Human Services releases the results of the National Survey of Children with Special Health Care Needs with the most recent report covering 2009 and 2010. For that period of time it was estimated that 11.2 million children (representing 15.1 percent of children in the U.S.) have special health care needs [1]. For the purposes of the survey, children with special healthcare needs are defined as:
Those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.
While the definition includes behavioral and emotional conditions, this column will focus on medical presentations. Additionally, while asthma and other chronic (but often well-controlled) medical conditions are include in the definition, EMS providers may find themselves responding to residences where families care for children with extremely complex medical histories and presentations. Initially, such calls may be difficult for EMS to respond to but with a few tips and planning some of the confusion can be mitigated.
The prevalence of special health care needs in the pediatric population increases with age, a fact that researchers attribute both to later development of medical conditions and certain conditions, like autism, which can only be diagnosed after certain developmental milestones have been reached [1].
Children with durable medical equipment
A piece of durable medical equipment is a device that provides assistive or life-sustaining support to a patient. Examples can be as varied as a wheelchair, walker or ventilator. For the purposes of the National Survey, mobility devices (wheelchairs and walkers) are separated from other equipment. Children with special health care needs utilize durable medical equipment at a rate of greater than 11 percent [1]. This means that in a given community, EMS providers have a reasonable chance of responding to patients with such equipment in the home. Familiarizing yourself with the adult and pediatric patients in your community who rely on this equipment can help reduce confusion when an emergency call comes in. For such calls, parents or full-time caregivers are often well-trained and can assist with managing equipment during transport.
Be sure to speak with your medical director in advance to determine what equipment may be transported with a patient. It may be necessary to disconnect certain equipment or to take a different approach to treatment and transport. For instance, a patient with a tracheostomy who is ventilator-dependent may have power or oxygen requirements for that piece of equipment that cannot be met in your ambulance. In that case, however, realize that chronic ventilator patients have carefully titrated respiratory settings and that even a short period of BVM ventilation may have long-term consequences. If there is ever a question about how to best manage a complex patient with durable medical equipment contact online medical control and discuss the specific situation using parents and caregiver expertise as appropriate.
Parents as a resource
Of children in the survey with special health care needs, nearly 65 percent received “family centered care” which is defined as “an approach to planning, delivery and evaluation of health care whose cornerstone is active participation between families and professionals” [1]. In these settings, parents of patients are typically knowledgeable about their child’s medical history and conditions. Additionally, parents often understand how to operate and troubleshoot any durable medical equipment their child relies on. In all these cases, like with most pediatric patients, EMS providers can rely on parents to calm and soothe patients and to guide EMS providers through the normal presentation for the patient.
In cases where a patient is presenting as altered or ill one of the first questions of parents or caregivers should be what the patient’s baseline is. It may be that drowsy and nonverbal, while concerning to EMS staff, is consistent with a particular patient’s baseline. Establishing a clear understanding of the patient’s usual presentation is invaluable when building a differential diagnosis and developing a treatment plan.
Additionally, parents can provide guidance on how best to approach assessing and treating a particular patient. It may be necessary to perform a blood pressure or listen to lung sounds on a parent or favorite stuffed animal to establish a rapport with the patient. EMS providers would likely not know what approach will work best without parental guidance. When the patient’s acuity permits, enlist parental help early on in the call.
Conclusion
After talking with Stephen’s mother and father, you find that he has been ill recently with flu-like symptoms and that his pediatrician warned his parents that increasing seizures might be expected. Stephen’s mother followed the pediatrician’s guidelines on administering the diazepam to halt his seizure but they would still like him to be transported for evaluation. Given Stephen’s slow respiratory rate, relative to his age, and mild hypoxia, you elect to administer blow-by oxygen and enlist his father to hold the mask. You also gently open Stephen’s mouth to look for any blood or secretions. Until Stephen becomes more oriented you ask his parents to comfort him in the recovery position; resting on his side. He gradually returns to consciousness and by the time ALS arrives he is consistent with his baseline mentation.
As you provide a report to the ALS transport crew you agree with the paramedic that she should take Stephen to the emergency department. Though Stephen does have a history of seizures his recent events have been more frequent and severe. Additionally, Stephen received medication for his seizure before your arrival and warrants additional assessment during transport.
References
U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. (2013). The National Survey of Children with Special Health Care Needs Chartbook 2009–2010. Rockville, Maryland: U.S. Department of Health and Human Services. Retrieved from http://mchb.hrsa.gov/cshcn0910/more/pdf/nscshcn0910.pdf
