How cycling vomiting syndrome affects patients and families Steve Wartenberg: Thanks for joining our ongoing series on cyclic vomiting syndrome with Dr. V. I'm Steve Wartenberg, your moderator. And this is Dr. Thangam Venkatesan. Dr. V, let's start today with another big question. Why is CVS important? Why do we need to know about it? Thangam Venkatesan, MD: So firstly, CVS is very, very common. And we had some studies in children initially because they thought it was a pediatric disorder. So some of the first few studies came out in children and that showed that the prevalence of CVS in children is approximately 2%. Now we do have more data and it looks like it is as common in adults. So the prevalence of cyclic vomiting syndrome in adults is also 2% in the US. Steve Wartenberg: 2% of the entire population? Thangam Venkatesan, MD: The US population. Steve Wartenberg: So that's millions of people. Thangam Venkatesan, MD: That is millions of people. That is correct. And really, to put it in perspective, two out of a hundred people have this disorder. Steve Wartenberg: Why do you think it was so misdiagnosed and underdiagnosed for so many years? Thangam Venkatesan, MD: So one, I think there was really a lack of knowledge about cyclic vomiting syndrome in the medical community. And most people actually thought it was a pediatric disorder, so adults were really not diagnosed with this disease. Unfortunately, many of them were misdiagnosed with, say, having food poisoning for the fifth time in a year, which I think is really an implausible diagnosis. Many of them had their gallbladders taken out. About 30% of CVS patients have their gallbladders taken out. I really want to kind of quote from this interesting study we did in 2010. And so we really asked patients as to what happened when they went to the emergency room, and unfortunately, about 94% of the time, they were not diagnosed with cyclic vomiting syndrome. Even when patients told their providers that they had a diagnosis of CVS, the physicians in the emergency department did not even recognize this. It's really an unfortunate story because the median number of ED visits by an adult patient can range from anywhere from seven to 15. Steve Wartenberg: A year? Thangam Venkatesan: Well, over a period of their course of their illness. And some of them have actually gone to the emergency department 200 times. Steve Wartenberg: 200 visits. Wow. Thangam Venkatesan, MD: Yes. By a single patient. Steve Wartenberg: So what happens when they go to the ER, particularly when the physicians either don't know or don't know how to treat it? Thangam Venkatesan, MD: So I will say that this study was back in 2010 and things have sort of really improved now, and it is being diagnosed a little bit more. I do think there are a lot of problems still in the emergency department, and we're hoping to find other innovative solutions, like really maybe the advanced urgent care that our Ohio State University now offers, because I really don't think an ED where people are having heart attacks is the right place. You could potentially send them to an infusion clinic. And you also actually have something called DispatchHealth now at OSU, where with a standardized protocol, my patients can actually call a number if they live in the Columbus area, of course, and somebody will really go to them and administer IV fluids and other antiemetics to make sure that they can control their symptoms at home. Steve Wartenberg: Oh, at home? Thangam Venkatesan, MD: Correct. Steve Wartenberg: Wow. Because that's the treatment is IV fluids because you get dehydrated, or part of the treatment. Thangam Venkatesan, MD: Correct. That is correct. Steve Wartenberg: So this must add up in the pocketbook, all these ER visits, even if you have health insurance. I mean, how expensive can this be? Thangam Venkatesan, MD: So there was one study where we actually looked at inpatient hospitalizations, that is something called the National Inpatient Sample or the NIS database, and we found that the cost for hospitalizations due to CVS was about 400 million in two years. And this didn't include a lot of other things like outpatient endoscopies and so on. This was really only inpatient hospitalizations. And this is probably an underestimate because many patients are really not being diagnosed adequately. Steve Wartenberg: When you say 400 million, that's not one person, that's aggregate/ Thangam Venkatesan, MD: That's an aggregate. Steve Wartenberg: Is there any studies that looked at what one person ... I know it's a range, what could one person have to pay? Thangam Venkatesan, MD: Absolutely. So more recently, actually, we did a study. We looked at something called the Market Health Claims Database, so we looked at insurance claims. And when we compared CVS patients to patients without cyclic vomiting syndrome, and these groups who were actually matched age and gender matched, and we found that on average it was about $60,000 for a CVS patient versus maybe about 15,000 or so for a non-CVS patient. So certainly there was a significant difference. And another important thing we actually found in the study is that the cost was really driven by in-hospital or hospital-based care. And so again, I think it really kind of reiterates the importance of preventive medication and management to try and keep these people out of the ER and also keep these people out of the hospital. So another problem obviously with adult patients with CVS is really sort of job loss or work days lost. And so on average, CVS patients can lose around about three weeks. As far as short-term absenteeism goes, an average CVS patient will lose about three weeks. And then if you take that into account, certainly that's a significant amount of money that both the patient is going to lose in terms of lost wages as well as really an impact on the entire community. So I think what I really want for you and the audience to take away today is one, CVS is very common with a prevalence of 2%; it has a huge impact on patients, families, and the healthcare system. So I think it's very important to diagnose, manage, and treat this condition. Steve Wartenberg: Wow. Well, thank you for that great overview and for really pointing out just how impactful and debilitating this can be for a patient. Thanks for watching and stay tuned for more episodes on what you need to know about CVS with Dr. V.   The Ohio State University Wexner Medical Center logo For more information, visit wexnermedica.osu.edu/CVS