Published in the August 2008 issue of Today’s Hospitalist
An infant suddenly gags, turns blue, loses muscle tone and may appear to stop breathing. Panicked parents rush the child to the ER, but by the time they see a physician, the symptoms have disappeared and the child seems perfectly healthy.
These types of incidents, known as apparent life threatening events (ALTEs), are frustrating for parents and pediatric hospitalists alike. ALTEs are tough to diagnose because they have so many potential causes and because children appear fine by the time they present. But despite the fact that ALTEs are common, physicians have no guidelines that offer a standardized approach to ALTE diagnostic testing, treatment or follow-up.
“ALTEs can be a difficult, frustrating, and less than satisfying professional experience,” says Laura J. Mirkinson, MD, chief of pediatrics at Blythedale Children’s Hospital in Valhalla, N.Y. “Many pediatricians approach the diagnosis with a real sense of dread.”
Because doctors have long grappled with the question of how to manage ALTEs, a team of pediatric hospitalists is now working to create a systematic approach to diagnosis and treatment. While the results of those efforts may be years away, a growing body of evidence is giving pediatric hospitalists some clues about the baffling nature of ALTEs.
ALTEs may not be an everyday occurrence, but that doesn’t mean they’re uncommon. One recent study found that these events may account for up to 1% of emergency room visits of children under 12 months old.
Because the causes of ALTEs are so varied, the events can be difficult for physicians to get their arms around.
“With ALTEs,” explains Joel Tieder, MD, a pediatric hospitalist at Children’s Hospital and Regional Medical Center in Seattle, “you have a broad definition and an open age range, with younger children having the highest risk. The underlying cause could be one of many things, which all require different workups and come with different levels of morbidity and mortality.”
In many instances, gastrointestinal issues are the culprit. “Perhaps the most typical ALTE is a child who has a regurgitation episode and then chokes or gags in an attempt to protect the airway,” Dr. Tieder says. “The child may then turn red or blue and may appear to stop breathing.”
For physicians, a big part of the problem is that “we don’t know what the chance is that it will happen again,” Dr. Tieder adds. Physicians are left guessing whether they need to do a work-up or treat for reflux “and whether any work-up or treatment will prevent another event.
In less common presentations, a child may exhibit some sort of abnormal movement or loss of muscle tone, and perhaps lose consciousness; parents may think it was a seizure. Other causes can include respiratory, neurological or cardiac events, or abuse.
About half of all children seen for ALTEs are eventually diagnosed with and treated for one of these underlying conditions. The other half, however, are considered to have experienced an idiopathic event, leaving doctors and families wondering what caused those events and if they will recur.
The importance of follow-up
While ALTEs frustrate physicians, they are traumatic for the parents of these children. Dr. Mirkinson believes one of the biggest challenges hospitalists face is reassuring the family.
“There are few things more terrifying than the sudden death-like appearance of a beautiful, healthy baby, particularly when there is no identifiable medical etiology,” she says. “For parents who experience this and go on to have a perfectly normal infant, a sense of ongoing vulnerability of that child can linger.”
According to one study, 83% of infants who experience an ALTE appear well by the time they are seen by an ED doctor. That makes deciding which tests to run even more confusing.
But while the symptoms may disappear before a physician arrives, the risk of a future event is very real. That’s why experts say it’s important to follow up on these children after they leave the hospital.
In a study led by Josh Bonkowsky, MD, PhD, a pediatric neurologist at the University of Utah in Salt Lake City, the results were “somewhat shocking,” he says. He found that 5% of ALTE cases presenting within a five-year period were either caused by or had an outcome related to some sort of neurological problem, including epilepsy. Another 11% were the result of child abuse. Those figures, which were published in the June 2008 issue of Pediatrics, “were much higher than we were expecting,” he says.
“If these children are going to have more seizures,” Dr. Bonkowsky points out, “it’s going to happen within a month or so of the initial event. You don’t want them to disappear into the backwoods.”
Making the diagnosis
When evaluating an infant who has had an ALTE, the first step is usually to take a careful and detailed history of the event. That can be difficult and somewhat unreliable because caregivers are understandably anxious. Next comes a full family and social history in which you need to focus in on the likelihood of diseases and events such as infection, seizures and trauma.
When it comes to interpreting those data and choosing a course of action, however, physicians are largely on their own. A study in the April 2005 issue of Pediatrics found that for many tests used to evaluate ALTEs, “the likelihood of a positive result is low and the likelihood of a contributory result is even lower.”
Dr. Tieder points out that while some doctors and parents alike find solace in lab tests or admitting the child for observation, there’s little evidence to prove that any of those strategies are effective or appropriate.
Researchers in a study led by Dr. Tieder and published in the May 2008 Journal of Pediatrics found that “a treatable diagnosis is seldom found.” The study cited recent research showing that the likelihood of a positive result from a single test is low (34%), and that the probability of a result revealing the cause of the ALTE is even lower (6%).
The study, which evaluated 36 children’s hospitals, also found considerable variation in the way ALTEs are diagnosed, treated and monitored in hospitals throughout the country. This variation is particularly evident when evaluating and diagnosing gastroesophageal reflux, one of the most common causes of ALTEs. “Variability in management of common medical conditions can be associated with poor quality of care,” says Dr. Tieder. “That raises significant concerns about how we as hospitalists care for these patients.”
Jack Percelay, MD, a pediatric hospitalist at St. Barnabas Medical Center in Livingston, N.J., notes that many children who experience an ALTE undergo sleep studies. While such tests, he points out, are very expensive, they don’t necessarily affect outcomes and can be a particular problem at teaching hospitals.
“When you have interns and residents with less experience,” Dr. Percelay says, “they automatically think these kids need a full septic work-up and lots of tests.”
The specter of unnecessary ALTE testing raises financial concerns. Researchers from the University of Utah noted that while the median hospital cost associated with an ALTE was $2,583, tests like MRIs and ECGs were typically not useful.
“A lot of kids get work-ups for seizures, and most of the time those are negative,” Dr. Bonkowsky says. The factor that his study found most accurately predicted a patient developing seizures “family history “required no testing at all.
Creating new standards
To help physicians cope with the uncertainty that surrounds ALTEs, the American Academy of Pediatrics (AAP) and the Society of Hospital Medicine have created a task force to recommend a standardized, evidence-based approach for children with ALTE symptoms. Dr. Tieder is heading up this group, which includes Drs. Bonkowsky and Percelay.
While the seven-member team has been working on the project since July 2007, Dr. Tieder says the group faces considerable challenges.
Because ALTEs are now a collection of very broad symptoms, some of which may be life-threatening, the team was reluctant to narrow the current definition of ALTEs. Team members are, however, using a unique approach to evaluate and report the evidence by categorizing recommendations based on a decision tree. (See “The most common causes of ALTEs,” below.) They also intend to use risk stratification as a basis for at least some of their recommendations.
If an infant has a fever, for example, “you might approach the work-up differently because that patient’s risk is higher,” Dr. Tieder explains. “Or perhaps it is something that a physician can easily explain, like a child who vomited and then choked. In that case, the risk of recurrence and subsequent morbidity might be low enough not to warrant hospitalization or a diagnostic work-up.”
For now, there’s still much work to be done to achieve that evidence-based approach. The panel intends to report its findings and recommendations by the end of the year.
The AAP is also working to remove one major obstacle to research into ALTE causes and treatments: the fact that there is no ICD-9 code for ALTEs. That makes it heard to even find all true ALTE cases to review in administrative data or individual patient charts. And because ALTEs are so broadly defined, researchers can’t always be sure that a diagnosis is correct, which further complicates attempts to classify and study the events.
Next month, the AAP plans to submit a proposal to the federal agency that releases ICD codes to add one specifically for ALTEs, Dr. Percelay says. If ALTEs don’t have a code of their own, he says, difficulties in researching them will only get worse.
“It would be like trying to analyze heart attacks if the only diagnostic code was chest pain,” Dr. Percelay explains. “You just can’t get very far with that.”
Dr. Percelay believes it will be another five years before the ALTE guidelines are firmly established. “But we’re pushing the agenda,” he says. “Until now, no one has really tackled this problem because it is such a Pandora’s box. This is pediatric hospitalists’ chance to address it and show our clinical leadership potential.”
Ingrid Palmer is a freelance health care writer based in West Chester, Ohio.