Accurate diagnosis, patient education, and collaborative decision making between patients and providers empowers patients with irritable bowel syndrome (IBS) to take their health into their own hands and stay out of the hospital.
Patient-provider collaboration during treatment decision making allows patients to remain empowered and knowledgeable about how to take care of themselves. This collaboration and emphasis on patient education can help improve patient outcomes and quality of life, and therefore improve symptoms and subsequently reduce payer costs.
Irritable bowel syndrome (IBS) is a group of symptoms that happen simultaneously, including repeated pain in the abdomen and changes in bowel movements, such as diarrhea, constipation, or both. With IBS, these symptoms can be present without visible signs of damage or disease in the digestive tract, according to the National Institute of Diabetes and Digestive and Kidney Diseases.1 There are multiple types of IBS, including IBS-C (IBS with constipation), IBS-D (IBS with diarrhea), and IBS-M (IBS with mixed bowel habits).
In the case of IBS, patient education and autonomy can help those affected have more control over their condition, and therefore stay out of the hospital. If patients with IBS can stay out of the hospital, this can assist in the retention of payer funds.
One study from April 2017 included figures that showed total cost for patients with IBS-D led by Jessica L. Buono , MPH, manager of Health Economics and Outcomes Research, Forest Research Institute, LLC.2
“The total cost difference for patients with IBS [IBS-D] versus matched controls has been estimated at $2,026 among patients in a health maintenance organization and $4,120 for patients with IBS-C in a U.S. commercially insured population,” detailed Buono’s study.
The researchers from the study analyzed total cost and incremental cost approaches for this disease state and found that total year all-cause costs were significantly higher among IBS-D patients compared with matched controls, and there was an incremental difference of $2,268 per patient per year after demographic and comorbidity adjustment. Medical services accounted for 78% of incremental all-cause costs and were mostly attributable to outpatient services.
It was also found that total yearly costs per patient of IBS-D are analogous to those attributable to asthma and migraine.
Additionally, most people may not be aware that they have IBS because it often takes patients years to get a diagnosis. In a survey from the International Foundation for Gastrointestinal Disorders (IFFGD), almost 2,000 patients with IBS reported that diagnosis of their IBS was usually made 6.6 years after symptoms began.3
People with IBS also face a stigma and may face embarrassment at the thought of bringing up their symptoms to their doctor. Since there is also no specific diagnostic test to determine if someone has IBS, describing symptomology to a health care professional may sound like symptoms of other health conditions, or even be determined as psychosomatic.4
While IBS is not a psychosomatic disease, there is a brain/gut connection present that can influence IBS symptoms and their intensity. As an example, stress can exacerbate IBS symptoms.
In an interview with The American Journal of Managed Care®, Ashkan Farhadi, MD, MS, FACP, in relation to a study he led titled, “Connecting Our Gut Feeling and How Our Gut Feels: The Role of Well-Being Attributes in Irritable Bowel Syndrome,” he explains the brain/gut connection further.5
“Basically, we think that there is a strong bidirectional connection between our...central nervous system and the nervous system in the gut, which we call [the] enteric nervous system. This rich connection with a lot of neurons and neurotransmitters and chemicals connects these 2 vital organs together. So, things are being sent directly into [the] gut at the same time all the messages are being relayed down to the gut, through brain gut axis,” said Farhadi.
The enteric nervous system consists of 2 thin layers of over 100 million nerve cells that line the gastrointestinal tract from esophagus to rectum, according to Johns Hopkins Medicine.6
When this knowledge is shared with the patient, healing can begin.
Education: More Than Information
When patients come in to see a health care provider and start explaining their symptoms, they can be burdened by having to advocate for themselves. Particularly when asked about pain, patients can insist that they don’t feel pain and providers can start to speculate that it’s “all in their head.7” This can lead to a lack of diagnosis, and therefore a lack of treatment, incurring more costs and suffering for the patient.
According to a focus group in a study published in 2018, 3 major themes appear to determine the experiences of patients with IBS:11
There are additional components that precede the clinical office visit that can still distress the patient as Farhadi explains below:
“Well, one thing we [as providers] should have in mind [is] that [the] overwhelming majority of people who have irritable bowel syndrome never seek medical attention. Basically, they are dealing with the symptoms, and that's their normal. They know that when they are stressed out, for example, their bowel movement changes. They may have pain and cramping and everything, and they usually live with it. They think this is how they are and who they are.
First of all, there [is] a lot of under representation of this condition for seeking medical help. On the other side of the coin is that when most of these patients seek medical help, and after a brief investigation, particularly by the GI [gastrointestinal] doctors, they are blowing off these patients [by saying], ‘Everything looks normal; everything is in your mind,’...So basically, that's another factor that may make these patients get frustrated with the medical health system,” said Farhadi.
Once a diagnosis is reached, patients might find relief in knowing what is going on in their bodies. Studies have shown that most patients prefer shared decision making with their doctors when deciding on treatment.12 This can be enhanced by patient education, especially about the brain/gut connection.
The first step to ensuring that physicians can adequately educate their patients with IBS is to ensure that they are receiving an accurate diagnosis. Due to the range of symptoms that can present with IBS, such as bloating, cramping, gas, and exacerbation of these symptoms as stress increases, it’s important that the health care provider listens carefully to the patient.
Even language such as “pain”, instead of “discomfort,” when describing abdominal symptoms can prevent providers from providing an appropriate diagnosis, says Eric D Shah, MD, MBA, of Dartmouth-Hitchcock Medical Center.
“Some patients might have abdominal discomfort or bloating, instead of pure pain. So, day to day, when I’m seeing patients, I’m really asking about more of the abdominal sensory symptoms overall that patients have and the bowel motor symptoms, and just seeing if there’s abnormalities there and if the 2 of those tie together,” continued Shah.
Alyssa Sutton, program coordinator for the International Foundation for Gastrointestinal Disorders (IFFGD), explained how patients want their symptoms validated and not told they’re making up symptoms.
“Speaking from [the patient] perspective, I think they just want to be seen as the whole person. Not just as somebody that’s experiencing IBS or that’s experiencing the symptoms of IBS.
I also think that patients do hear a lot of ‘it’s all in your head.’ And so treating IBS, I think a lot of physicians go more for the psychological aspects, vs the physical symptoms. And I think the patients want to be heard; they want to be able to advocate for themselves,” said Sutton.
Once an appropriate diagnosis is made, patients and providers can work together to come up with a treatment plan.
Patient Autonomy: Working Together
Dr Farhadi explained the importance of including patients in care and how the bulk of their disease management rests on their shoulders:
“Basically, the foundation of treatment of IBS is education. I always tell my patients, ‘I'm not the manager of your disease, you are.’ My goal is to train the manager, and my goal is to educate the manager.’”
Once education is given by providers, patients can play a role in managing their own care and learning about the triggers that exacerbate their stress and/or their symptoms.
According to a study conducted in 2020, “patients who participate in their decisions report higher levels of satisfaction with their care; have increased knowledge about conditions, tests, and treatment; have more realistic expectations about benefits and harms; are more likely to adhere to screening, diagnostic, or treatment plans; have reduced decisional conflict and anxiety; are less likely to receive tests or procedures, which may be unnecessary; and, in some cases, even have improved health outcomes.”13
Farhadi continued to say, “In the overwhelming majority of my cases, I try to stay away from pharmacological intervention. The reason is, I'm not dealing with a short-term problem; this is a long-term problem. Now, you are treating a lifetime problem with something that in most healthy minds is considered temporary. You're given a medication; you're given a chemical that supposedly is some temporary fix for something. That's not ideal. And we are going to mention that to individuals that the main purpose of this [treatment] is a band aid [for their] symptoms, and they understand it.”
Farhadi emphasized the importance of education in the management of disease, particularly IBS, which provides the patient with autonomy to make their own decisions based on education, and to help themselves continue to stay healthy and out of the clinic or hospital.
What Does This Mean for Payers?
Cost of care for IBS is expensive: “Total direct costs associated with IBS have been projected as $6,182 per IBS patient per year compared with $4,156 for age- and sex-matched controls for patients in a US health maintenance organization, with patients with IBS-C possessing an estimated $4,120 of all-cause costs, most of which were derivable to medical services, according to a Buono's study.
Shah agreed with this, saying, “Costs for medical care, including pharmacy costs, procedure costs, outpatient visits are increasing, and medical care is already over one-fifth of the country’s total gross domestic product in the US alone.”
Availability of multiple treatment options can also influence the kind of care patients are able to receive. Shah noted that if there is no access to treatment, there is no choice, and highlighted the importance of patient advocacy groups to assist in areas, such as fresh food access and pharmacological treatments, so that they are able to make their own treatment choices and have that autonomy vs being limited by few options because of the lack of accessibility.
Buono's study found that patients with IBS-D had more medical service use and acquired significantly more annual all-cause health care costs, even after controlling for demographics and comorbidities. These costs were found to be derivable to more use of medical services rather than pharmacy costs.
The aforementioned data displays the necessity for faster diagnoses, accurate recording of symptomology, appropriate treatment collaboration, and follow through of treatment plan. Then, patients can take their care into their hands and work with their health care provider to manage their conditions and live a healthy life.
Patient self-management of IBS, as well as accessibility, will enhance patients’ ability to stay out of the hospital and ultimately save money. In terms of policy, IBS prescription drug coverage continues to be just as important in the management of IBS as any other chronic disease, said Eric Shah, MD, in a separate study.16
“But the bottom line is this: when the patient doesn’t have symptoms, [the] payer can have a sigh of relief,” said Farhadi.
1. Irritable bowel syndrome (IBS). National Institute of Diabetes and Digestive and Kidney Diseases. Accessed June 23, 2023. https://www.niddk.nih.gov/health-information/digestive-diseases/irritable-bowel-syndrome#:~:text=Irritable%20bowel%20syndrome%20(IBS)%20is,disease%20in%20your%20digestive%20tract
2. Buono JL, Mathur K, Averitt AJ, Andrae DA. Economic burden of irritable bowel syndrome with diarrhea: retrospective analysis of a U.S. commercially insured population. J Manag Care Spec Pharm. 2017;23(4):453-460. doi:10.18553/jmcp.2016.16138
3.IBS facts and statistics. International Foundation for Gastrointestinal Disorders. Accessed June 23, 2023. https://aboutibs.org/what-is-ibs/facts-about-ibs/
4. Ko C, Lucassen P, van der Linden B, Ballering A, Olde Hartman T. Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes - A systematic review. J Psychosom Res. 2022;154:110715. doi:10.1016/j.jpsychores.2021.110715
5. Farhadi A, Banton D, Keefer L. Connecting our gut Feeling and how our gut feels: the role of well-being attributes in irritable bowel syndrome. J Neurogastroenterol Motil. 2018;24(2):289-298. doi:10.5056/jnm17117
6. The brain-gut connection. Johns Hopkins Medicine. Accessed June 23, 2023. https://www.hopkinsmedicine.org/health/wellness-and-prevention/the-brain-gut-connection
7. Burke MJ. “It’s all in your head”—medicine’s silent epidemic. JAMA Neurol. 2019;76(12):1417–1418. doi:10.1001/jamaneurol.2019.3043
8. Irritable bowel syndrome- clinical evaluation of products for treatment. FDA. June 2012. Accessed June 23, 2023. https://www.fda.gov/regulatory-information/search-fda-guidance-documents/irritable-bowel-syndrome-clinical-evaluation-products-treatment
9. Irritable bowel syndrome. Mayo Clinic. May 12, 2023. Accessed June 23, 2023. https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/symptoms-causes/syc-20360016
10. Irritable bowel syndrome- aftercare. Mount Sinai. Accessed June 23, 2023. https://www.mountsinai.org/health-library/discharge-instructions/irritable-bowel-syndrome-aftercare
11. Halpert A. Irritable bowel syndrome: patient-provider interaction and patient education. J Clin Med. 2018;7(1):3. doi:10.3390/jcm7010003
12. US Preventive Services Task Force. Collaboration and shared decision-making between patients and clinicians in preventive health care decisions and US preventive services task force recommendations. JAMA. 2022;327(12):1171–1176. doi:10.1001/jama.2022.3267
13. Krist AH, Tong ST, Aycock RA, Longo DR. Engaging patients in decision-making and behavior change to promote prevention. Stud Health Technol Inform. Published online 2017. Accessed June 30, 2023. doi:10.3233/978-1-61499-790-0-284
14. Buono JL, Mathur K, Averitt AJ, Andrae DA. Economic burden of irritable bowel syndrome with diarrhea: retrospective analysis of a US commercially insured population. J Manag Care Spec Pharm. 2017: 23 (4): 453-460. doi:10.18553/jmcp.2016.16138
15. Shah ED, Salwen-Deremer JK, Gibson PR, Muir JG, Eswaran S, Chey WD. Pharmacologic, dietary, and psychological treatments for irritable bowel syndrome with constipation: cost utility analysis. MDM Policy Pract. Published online January 18, 2021. Accessed June 23, 2023. doi:10.1177/2381468320978417