“Everyone, soon or late, comes round by Rome”—Robert Browning
Chronic or recurrent abdominal pain (RAP) is one of the most common symptoms to prompt a referral to the pediatric gastroenterologist. Complete monographs, textbook chapters, and symposia (1–3) have focused on this challenging clinical entity. With all of this attention, have scientific inquiry and discussion moved the clinical practice forward?
In this issue of JPGN, Schurman et al report on the results of their 2006 survey of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) membership. The authors compare their latest findings to those of a similar survey they performed in 1992. Their article gives members of the pediatric gastrointestinal (GI) community an opportunity to look in the mirror and assess their current view of RAP including the etiology, evaluation, and management of this common symptom.
During the 15 years between the 2 surveys, a biopsychosocial model of RAP has emerged along with 2 broad etiologic categories: organic and functional. Although an organic etiology involves either a structural, metabolic, or inflammatory abnormality with consequent tissue damage, functional gastrointestinal disorders (FGIDs) do not. Such FGIDs have been the focus of the so-called Rome process. A major purpose of the Rome Committee has been to make it possible to diagnose FGIDs actively by using symptom-based diagnostic criteria rather than to leave these as diagnoses that are made after organic pathology is excluded (4).
The first notable finding in Schurman et al is that few pediatric gastroenterologists use the Rome criteria on a daily basis. In fact, although 96% of the surveyed pediatric gastroenterologists were familiar with the Rome criteria, there was no solid consensus on the definition of a FGID. The term “functional” is “not real” but a concept “only in the patient's head” permeates the survey results. Should we be surprised?
Perhaps the term “functional” refers more to what one considers to be their function as a gastroenterologist rather than any profound description of their patient's condition. Clinical pediatric gastroenterology has emerged from its adolescence. The ability to perform endoscopy in even the smallest children is no longer a challenge. So much of the training of today's clinical pediatric gastroenterologist is designed to teach technical skills so that we are proficient at “doing all the tests” and being able to “see what is going on.” Consequently, at a fundamental level, our training and earliest professional development can lead us to look at patients with FGID as not true patients with GI—they do not have what we worked so hard to learn to see. Unfortunately, however, our instruments measure the wrong pathology. Although there is no good old-fashioned pus and blood into which we can sink our forceps, there are an ever-emerging number of reported pathologic findings in subjects with FGIDs including genetic predispositions (5,6), alterations in visceral sensation (7–9), increased intestinal permeability, and even histological inflammatory changes (10). As clinical gastroenterologists we lack the tools to routinely find many of these abnormalities in our patients. Perhaps a working analogy could be made if the cardiologists only had echocardiography without electrocardiogram. In such a setting, these well-trained physicians would probably conclude that their patients with syncope or palpitations were a bit histrionic and that it “all must be in their heads” because every test would show such patients to have structurally normal hearts.
Working within the reality that we do not have a practical method to measure what is really going on with our patients with FGID, the Rome Committee suggests that we make diagnoses based on positive symptoms and the lack of clinical red flags. Schurman et al demonstrate that although there may be a theoretical acceptance of these concepts, this is not what is happening in the pediatric GI offices and clinics across North America. Previous studies have demonstrated that there is a lack of uniformity in how the Rome criteria may be applied leading to diagnostic uncertainty (11). Additional reasons offered by Schurman et al for this apparent disconnect include differing histories offered by the parents and the child as well as the lack of any prospective outcome data with use of the pediatric Rome criteria. Such diagnostic and therapeutic uncertainty would work against the use of any clinical tool. In addition, there is the fear factor—one can hear the clinicians musing whether families will believe the diagnosis without a positive test while also fearing litigation for “missing something.” Consequently, the most recent NASPGHAN survey demonstrated a move away from general pediatric investigations such as urine testing and an increase in gastrointestinal investigations including nuclear gastric-emptying studies and GI biopsies.
The need for a positive or organic diagnosis was further demonstrated by the fact that only 42% of the patients with RAP in the 2006 survey were ultimately given a diagnosis of functional abdominal pain. There was a doubling in the rate at which the diagnosis of gastroesophageal reflux was made (12% vs 24%) in keeping with the apparent gastroesophageal reflux disease “epidemic” across the ages (12). As another sign of the apparent disconnect with the Rome criteria, the single most common diagnosis labeled as organic was constipation—an entity many of the Romans would claim to be theirs.
So what could be wrong about ignoring Rome? It should come as no surprise that with the level of testing demonstrated by Schurman et al, involvement of the pediatric gastroenterologist markedly increases the financial cost of caring for the patient with RAP. Yet, recent data demonstrate that patients are referred to the gastroenterologist more as a result of parental concern rather than the patient's symptoms (13). But before we reassure the parents, we do a lot of tests. In an era in which health care financial resources are continuously pinched, the current practice of the NASPGHAN membership may not be sustainable. In addition, one must ask what is the emotional cost of the patient who rides the ups and downs of our diagnostic roller coaster? With each investigation, the child and family hopes to finally find an answer only to be told the “bad news”—the tests were normal! It is also likely that such investigations diminish the power of reassurance because, if we are so sure everything will be all right, why did we have to do so many tests? Although 87% of the NASPGHAN members used reassurance, 65% also referred the patients to mental health services—what message is this sending to our patients and their families?
So what is the best way to approach the pediatric patient with RAP? Clearly, the need to resolve this question is on the rise. Comparing the 1992 and 2006 results, the volume of patients with RAP being seen by pediatric gastroenterologists seems to have more than doubled. Undoubtedly this means less time for the busy clinician to help an even greater number of these potentially clinically challenging patients. Although pediatric gastroenterologists grasp the theory of functional GI disease, the time has come to generate meaningful clinical outcome data in patients diagnosed by the Rome criteria while we await the biomarkers that can better aid in FGID diagnoses. Such advancements could then lead to intervention trials to help us unlock what we all await—elucidation of the best treatments to improve the quality of life and the overall health of our patients with FGIDs.
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