DDW is one of those experiences I don’t think I will ever forget. Whenever I used to think about how researchers are out there studying Crohn’s Disease, it always felt detached. Like they are faceless people in labs hundreds of miles away. That changed with DDW. I could see the men and women working enthusiastically towards the betterment of my life. I could see their faces, I could hear their excitement, and suddenly research wasn’t this abstract idea any more. Research is now Ashwin Ananthakrishnan, Pabitra Sahu, and the countless other researchers who spend their time and resources in pursuit of a better life for people with IBD.
I could probably write about each and every IBD session at DDW, but I have chosen to focus on the session titled Efforts to Understand Disease and Improve Management of Inflammatory Bowel Disease. This was one of the first sessions I attended at DDW, and it covered a wide variety of topics. Within this session, two presentations stood out: Higher Resource Utilization and Economic Burden Associated With Fatigue in Inflammatory Bowel Disease and Randomized Clinical Trial: Exclusive Enteral Nutrition Versus SOC for Acute Severe Ulcerative Colitis.
Higher Resource Utilization and Economic Burden Associated With Fatigue in Inflammatory Bowel Disease
Fatigue can be one of the most debilitating parts of having IBD. Most of us have had days where everything we have planned becomes derailed because our bodies are exhausted. There is this idea that fatigue is a normal part of life for people with chronic diseases. Like it is expected, and therefore it isn’t worth addressing. I certainly know that fatigue gets put on the backburner at most GI offices. I’m not even sure if in my 5 years as an IBD patient that I have ever had a discussion about fatigue with my doctor.
I think that most IBD patients would agree that fatigue has not only a large impact on their disease, but on their life in general. This disconnect between how providers and patients view the importance of fatigue is challenged by the research presented by Dr. Ashwin Ananthakrishnan. He discusses the findings from his study focused on determining the economic burden of fatigue in IBD patients. Before we get into his findings, it is important to set the stage. The study presented was a Retrospective Nested Case Controlled Study.
Retrospective - looks at the past.
Nested - The case control was taken from a specified group of people
Case Controlled - IBD patients with fatigue were matched with IBD patients without fatigue.
The study looked at patients with both CD and UC who were newly diagnosed (<12 months). There were 21321(!) patients in the fatigue and non fatigue groups. Outcomes compared include rate of:
IBD surgery
Hospitalization
ED visits
Outpatient Visits
Total, medical, and pharmacy costs
The researchers looked at the above outcomes from all causes and from IBD specific causes. That is just to say that they wanted to determine if the hospitalizations, ED visits, and outpatient visits were because of the patient's IBD or some other outside factor.
So what did they find?
That is a significant difference in every. Single. Outcome. IBD patients with fatigue are more likely to be hospitalized, visit the emergency department, and have outpatient visits than those without fatigue. What did that mean for the costs? The researchers also found that IBD patients with fatigue had higher direct costs than those without fatigue. This was true in both mild and moderate/severe disease, showing that even in patients with mild disease fatigue increases healthcare costs.
This is huge. A lot of the time, in America at least, healthcare is focused on cost-benefit analysis. That is to say: if the insurance company spends the money, is the benefit great enough to justify that expense. This study shows that leaving fatigue untreated in IBD patients results in significantly greater expense, which in turn means that there is a huge benefit in making sure that fatigue is treated in IBD.
Overall, the study presented here reinforces the importance of treating fatigue in IBD patients. Fatigue appears to be a source of economic burden that warrants an increased attention and interventions. For IBD patients, hopefully this means that our providers have increased awareness of how fatigue impacts our day to day lives. Now that there is an understanding that fatigue is a problem, the logical next step in my mind is for research to determine how best to address fatigue in IBD. For now, frequent naps and an unholy amount of coffee will have to do.
Randomized Clinical Trial: Exclusive Enteral Nutrition Versus SOC for Acute Severe Ulcerative Colitis
The next study from this session I wanted to hone in on discussed exclusive enteral nutrition (EEN) in severe ulcerative colitis. EEN is when patients are fed enteral formula either by mouth or through a feeding tube for a period of time. It has been shown to promote mucosal healing, correct dysbiosis, modulate the immune system, and improve nutritional status. Currently, the best research for its use is in the pediatric Crohn’s Disease population, where it is considered a first line therapy. I am a huge proponent of the need for more research in EEN, which is why this study is so exciting.
The goal of this study presented by Dr. Pabitra Sahu was to evaluate + EEN vs standard of care for acute severe ulcerative colitis. Both groups received steroids treatment, so the main difference between groups was diet: EEN vs a normal diet in the standard of care group. EEN consists of peptamen, which is a semi elemental (partially broken down, easier to digest) formula. The study evaluated 62 patients, 32 in the EEN group and 30 in the standard of care group. The authors primarily wanted to know if EEN had a significant effect on corticosteroid failure, with a few secondary outcomes including measuring markers of inflammation and fecal microbiome analysis.
As far as the primary result, this study found that there was no significant difference between the EEN group and standard of care group when comparing the rate of steroid failure. This doesn’t take into account that 5 patients in the EEN group were found to be intolerant to EEN, and thus had to stop therapy early. When the authors compared the EEN group without these patients to the standard of care group, a significant difference in steroid failure rate was observed.
As far as secondary outcomes, there are a few worth mentioning. The EEN group had a significantly shorter duration of hospitalization when compared with the standard of care group. The EEN group also had greater reduction in CRP (measure of total inflammation) from day 1 to day 5 than the standard of care group.
Analysis of the fecal microbiome showed that there was a significant difference in the distribution of four bacterial genera. One bacteria, Erysipelotrichaceae (who thought that name was a good idea?), was increased in EEN. Erysipelotrichaceae has been linked with increased inflammation and disease activity in pediatric IBD, so it appears to be beneficial that the EEN group had an increased number of this genus.
To conclude, this study showed that there is a possible benefit to a short course of EEN alongside steroid treatment to improve steroid response rate, decrease duration of hospitalization, decrease inflammation, and modify the microbiome. While this study might not be strong enough to warrant using EEN for each and every severe UC patient, it at least provides another option to discuss with motivated patients looking to improve their chances responding to therapy. I know that if I were to be hospitalized I would want to do everything possible to increase my chances!