This study found that patients with CVS reported that the cause of their symptoms was frequently unrecognized or misattributed in the ED, even among patients with an established diagnosis. The differences in the number of ED visits before diagnosis in children and adults are likely a reflection of the awareness of CVS amongst pediatricians and adult physicians. Though CVS was first described in children in the 19th century, it still remains largely unrecognized in adults despite increasing evidence to the contrary. This is likely due to inadequate knowledge and understanding about the disease and the relative paucity of literature on this disorder especially amongst adult physicians.
Half of the ED visits in our study population occurred prior to the diagnosis; under-recognition likely contributed to this significant delay in diagnosis, as individual episodes may have been attributed to acute viral illnesses or other causes. Delay in making the correct diagnosis results in a lack of preventive care, and may lead to unnecessary interventions, both diagnostic (e.g., endoscopy) and therapeutic (e.g., cholecystectomy) in both adults and children [15
Even though CVS was not recognized by ED personnel even when patients already bore the diagnosis, the vast majority of all CVS patients received intravenous fluids, an appropriate intervention in patients with dehydration from vomiting of any cause. However, we cannot tell from our results whether dextrose-containing fluids were used or not; this may be important since dextrose-containing intravenous fluids may be therapeutic in the management of acute CVS episodes [11
]. It is also encouraging that 80% of patients who presented to the ED with a protocol for acute management of CVS had their protocols followed. Unfortunately only a minority of patients had such care protocols from their physicians. This should prompt physicians who take care of CVS patients to collaborate with ED physicians in establishing individualized protocols for acute management of CVS episodes.
Our patients with CVS had a substantial number of ED visits with high rates of utilization of ED services. In addition to generating an enormous number of ED visits, these patients visited at least four separate EDs on average and this may be an attempt by the patient to seek out effective medical care. Despite repeated visits, the majority of patients in this study were not referred to gastroenterologists.
Inappropriate referrals or non-referrals can lead to further ED visits and also a significant delay in the institution of preventive therapy. The therapy of this disease is very similar to migraine headaches and includes preventive therapies (e.g. amitriptyline), abortive therapy with triptans and supportive strategies (intravenous hydration and sedation) [18
]. It has been shown that establishing a diagnosis and providing appropriate treatment has a good response in patients with CVS [15
The economic impact of individual ED visits is staggering and data from our institution indicate that there were 131 visits for CVS in the year 2008. With the cost of a single ED visit being US $2880, the cost of ED management of CVS in our hospital alone would amounts to US $ 377,000 in one year. For cost-effective care it is crucial that steps be taken to address this issue including education about CVS amongst ED personnel and the medical community and further research on newer therapies for CVS. Further efforts in this regard will not only alleviate patient suffering but can potentially transform into saving of hundreds of thousands of dollars.
There are several important limitations of this study. First, all data are self-reported, and therefore subject to recall bias. While such information is reflective of the patient experience, details may not be completely accurate. For example, it is possible that ED personnel were aware of the diagnosis of CVS but may not have communicated this understanding to the patient or caregiver. Respondents, who were identified through the CVSA Web site, may be a select group of patients who are more knowledgeable about CVS, or who have had negative experiences prompting their participation. CVSA members could also be more likely to have a more severe course than others with CVS, although, arguably it is this very subset of patients that needs to be targeted as they utilize enormous health care resources. It is even possible that some respondents do not actually have CVS, but we believe this is unlikely as non-CVS patients would have little incentive to visit the CVSA Web site and participate in the survey.
Also, since this survey only included patients with CVS who had visited an ED, we were unable to ascertain what proportion of CVS patients use the ED or the factors that lead to frequent ED use among patients with CVS. However in the author's own cohort of over a hundred patients with CVS, 13% of patients presented to the ED > 12 times a year (unpublished data). In an effort to protect the personal health information of these patients we did not attempt to obtain geographic location. We are unable to comment about other factors that may be important with regard to ED use among CVS patients such as seasonality or whether these patients were cared for in academic or non-academic centers.