Inflammatory bowel disease (IBD) affects millions of Americans, and often results in expensive surgeries and treatment. Researchers studied how a care coordination program could affect patients’ symptoms and costs.

  • The researchers found care coordination helped improve patients’ symptoms. It also was cost-neutral.
  • It takes a multipronged approach to provide comprehensive care, tailored to patients’ needs.
  • Patients reported their monthly symptom scores through the health system’s patient portal.

High-risk patients with inflammatory bowel disease (IBD) experience high direct costs and a substantial symptom burden. Researchers designed a care coordination-based solution to improve their symptoms and reduce care costs.1

The solution was cost-neutral, but helped improve patient symptom scores.

“We showed that symptoms improved,” says Jeffrey Berinstein, MD, MSc, clinical instructor in the division of gastroenterology and hepatology at Michigan Medicine. Berinstein also is a member of the Institute for Healthcare Policy and Innovation at the University of Michigan.

IBD affects several million Americans. It is a high-cost, low-prevalence condition that often results in surgeries, expensive medication, and hospitalization. Medication is important, but other factors can affect patients’ outcomes, including psychosocial issues.

“If you are depressed and have comorbid symptoms, you can’t get the care you need,” Berinstein says. “It takes a multipronged approach to provide comprehensive care tailored to the needs of patients — one size fits all does not work with this population. We also showed that patients utilized the intervention pretty well; there was good fidelity to the intervention. It did what it was supposed to do, and it was cost-neutral.”

The care coordination model, designed for IBD patients at high risk of debilitating symptoms and high medical costs, added value to patients’ care without increasing costs. “Patients were satisfied,” Berinstein says. “Given the neutral costs and clear symptom benefits, there’s a strong argument to do this.”

This is how the care coordination intervention works:

Tailored approach. Investigators designed it with a tailored, individual approach, based on each patient’s needs.

“We took the highest-risk patients, who would be the highest risk in costs, and randomized them to usual care or care coordination,” Berinstein says.

Coordinator training. “I did most of the training, along with a few of my colleagues,” Berinstein says. “Basically, we had coordinator watch 80 hours of videos online about patients so she could be familiar with inflammatory bowel disease. Then, I observed her with patients. Throughout the intervention, I would assess fidelity to the intervention.”

Berinstein selected cases to evaluate for each care coordinator. He provided feedback throughout the intervention.

Monthly symptom scores. Each month, patients reported their symptoms through their electronic medical record (EMR) patient portal.

Validated patient-reported outcome measures addressed bowel symptoms, functional symptoms, systemic symptoms, daily coping, weekly life impact, and weekly emotional impact.1

Patients reported whether they experienced fever, chills, dehydration, discomfort with leaving their home or traveling, and depression. They were asked how their disease interfered with their life in the past seven days, including these questions:

  • How much did your disease interfere with your ability to perform?
  • How much did your disease interfere with your sleep?
  • How much did your disease make leaving home difficult?
  • How much did your disease make you less interested in sex?
  • How much did your disease make it difficult to plan several days ahead?

The care coordinator monitored the reported symptoms and made recommendations based on what he or she saw. If a patient reported depression symptoms, the care coordinator might recommend counseling.

“We recommended labs to the doctor and nurse, and follow up, accordingly,” Berinstein adds.

Coping skills. People with IBD often experience bowel symptoms that cause great discomfort and make socialization challenging.

“Unfortunately, because it’s a bowel disease, patients might have 10 bowel movements a day,” Berinstein explains. “If they have symptoms, they’re afraid to go out or use public transit.”

Sometimes, their problems are functional, which are not attributable to active inflammation. The care coordinator could refer patients to professionals to help them cope with their disease.

The care coordinator teaches patients simple coping mechanisms, including diaphragmatic breathing and progressive muscle relaxation. The care coordinator also uses YouTube videos and refers patients to social work and other services based on their needs.

Streamlined coordination. Care coordination is a new position in the gastroenterology world.

“Obviously, care coordination has been around a long time in other conditions: diabetes, heart conditions, asthma,” Berinstein says. “It’s well established in those areas, but in gastroenterology, we did a more multidisciplinary care model.”

The multidisciplinary care model is costly, and it was not studied in a randomized, controlled trial.

“This randomized study did not involve a massive multidisciplinary team, and did not require widespread system re-engineering,” he says. “We did not have to change clinics or provide patients with clinics at home because we used the electronic medical record to send records and get scores sent to us.”

Patients can access the EMR’s patient portal on their computers or phones.

“About 90% of patients were using it, and we took advantage of it, sending screening questions once a month,” Berinstein says.

Once patients answered the screening questions, the care coordinator reviewed the data and decided what patients would need based on their answers, he adds.


  1. Berinstein JA, Cohen-Mekelburg SA, Greenberg GM, et al. A care coordination intervention improves symptoms but not charges in high-risk patients with inflammatory bowel disease. Clin Gastroenterol Hepatol 2021;S1542-3565(21)00914-9.