Cover Story

Jailbreak: How To Ease the Life Sentence of Inflammatory Bowel Disease

Some 1.6 million Americans suffer from life-disrupting IBD. New delivery models that integrate care and engage patients offer some hope.

Lola Butcher

For nearly three decades, Lawrence Kosinski, MD, wrapped up almost every appointment with a patient with inflammatory bowel disease (IBD) the same way: “Call me if anything changes.”

They never called.

“Then I see them in the ER when they are deteriorating and I say, ‘Why didn’t you call me?’” he says. “And they say ‘Oh, doc, I was too busy.’ Or ‘I thought it would go away.’ Or ‘I didn’t want to bother you.’”

Kosinski and his colleagues at Illinois Gastro­enterology Group, a 53-physician practice in the Chicago area, recently developed a patient-engagement strategy that dramatically changes their interactions with patients diagnosed with IBD. One result: Per-patient hospital inpatient costs fell by more than 50% in the first year.

Miguel Regueiro, MD, a gastro­enterologist at University of Pittsburgh Medical Center, teamed with a psychiatrist to develop an integrated care model that anticipates behavioral health problems that often accompany IBD. In the first year of a pilot, emergency visits and hospitalizations dropped by more than half.

And in Nashville, the Inflammatory Bowel Disease Center at Vanderbilt University Medical Center sees patients from 27 states when their frequent trips to the emergency room confound their hometown gastro­enterologist. Their initial appointments last up to four hours, including assessments by a psychologist, a social worker, and a dietitian.

David A. Schwartz, MD

Initial appointments for particularly problematic patients can last up to four hours, says David A. Schwartz, MD, of Vanderbilt University Medical Center. He heads the Inflammatory Bowel Disease Center.

“Once they come to see us for a consult, we can usually reduce or eliminate their ER visits by addressing the whole patient,” says David A. Schwartz, MD, the center’s director.

More important than the reduced hospital use and the cost savings, these programs are sparing young people from many of the most dire IBD complications, which often occur when they are in school or starting careers and families. Most Crohn’s patients are diagnosed in their teens and 20s; ulcerative colitis is typically diagnosed when a patient is between 30 and 40 years old.

“We’re talking about bowel obstructions, abscesses, fistulas, surgeries, colostomies, ileostomies,” Kosinski says.

These doctors are all enthusiastic proselytizers for “whole-person care” that goes beyond diagnosing IBD and treating symptoms as they emerge. Their work is getting a fair amount of attention, and a handful of practices—mostly at major academic medical centers—are joining their small movement.

But none expect their innovations to become the standard of care anytime soon.

Not just a GI problem

Crohn’s disease and ulcerative colitis—described collectively as IBD—are autoimmune disorders that affect about 1.6 million Americans, according to the Crohn’s & Colitis Foundation. Ulcerative colitis is inflammation and ulcers in the lining of the large intestine only. Crohn’s disease involves inflammation anywhere along the digestive tract.

The causes for either condition are not known, although researchers believe genetic and environmental factors contribute to the development of both diseases. What is known: The diseases are incurable, so patients—and the insurers who cover their medical costs—are strapped with the burden for decades.

Patients with IBD have annual direct health care costs averaging $12,000 to $20,000 per patient, although the range is much larger than that.

Patients with mild symptoms or whose disease is in remission typically can be treated with relatively inexpensive maintenance therapies. But for those being treated with Remicade, Humira, or one of the other biologics, the costs go way up. A year of Remicade or Humira treatments in a physician’s office can cost more than $30,000; in a hospital outpatient department, it may be triple that or even more. And for those whose symptoms are poorly controlled who require multiple diagnostic tests or end up hospitalized, the costs can be astronomical.

Miguel Regueiro, MD

Psychosocial issues—including illness perception, difficulty with coping, and other issues—can make poor health even worse, says Miguel Regueiro, MD, of University of Pittsburgh Medical Center.

In recent years, GI specialists have come to understand that IBD often means dealing with more than just the physical aspects of an inflamed gut. Patients have high rates of depression, anxiety, and chronic pain that lead to suffering, high utilization of health care services, and expense. Patients with IBD often have many tests, trips to the emergency department, and hospitalizations for severe pain that are not caused by active inflammation from Crohn’s or colitis, but related to mental health comorbidities, Regueiro says. Psychosocial issues—including illness perception, difficulty with coping, and a variety of unhealthy behaviors and stresses—can make poor health even worse. Patients with IBD sometimes struggle with issues beyond the boundaries of immediate physical and mental health concerns. They are, for example, more likely to have marital and family problems than healthy people. Because they often need time off from work to manage their illness, regular employment can be elusive. The challenges of accessing, paying for, and complying with treatment can be overwhelming.

Despite that recognition, most GI practices do not help patients address mental health or psychosocial issues that are integral to their disease.

For one thing, GI practices are not accustomed to coordinating care with other disciplines. Medical social worker Marci Reiss started the IBD Support Foundation 11 years go. The not-for-profit outpatient service provides psychosocial support and education to IBD patients and their families in southern California. Even though GI specialists agreed that their patients would benefit from her group’s services, they were not proactive in heading off problems.

Marci Reiss

“You want to help before they get to a crisis,” says Marci Reiss, founder of the IBD Support Foundation. But too many doctors refer patients to the foundation only when the patients are in dire straits.

“Doctors were remembering to refer patients only if the patient was sobbing in their office or facing a complicated surgery or a major treatment overhaul,” she says. “You want to help before they get to a crisis.”

While many gastroenterologists do recognize their patients need more proactive care, says Joel V. Brill, MD, chief medical officer of Predictive Health in suburban Phoenix, most are not set up to offer the array of services that would benefit them.

“It takes resources, and not every practice is organized in a way to move from being reactive [to patient crises] to incorporating nurses, pharmacists, dietitians and social workers into the practice to identify and reach out to patients,” he says.

Before they do that, practices need access to medical and pharmacy claims data to understand how often their patients are going to the ED or urgent care in search of relief from chronic pain or other symptoms. And they need to merge those claims data with their patients’ clinical data to identify patterns that would suggest better treatment approaches.

“Do most practices have the resources to do that?” he says. “The answer is no.”

Can’t be too intrusive

Jenetha Piecz is a busy mom who teaches horsemanship—trail riding, jumping, basic dressage—and preaches the importance of the relationship between rider and horse.

“Does your horse come greet you at the gate, even if you aren’t carrying a treat?” she writes on her website. “Does your horse stand for you to mount, allow you to groom him while he stands quietly?”

She can focus on that passion for horses because her Crohn’s disease—diagnosed nearly two decades ago when she was in her early 30s—is under good control. But the memories of being so ill she could not care properly for her children, of wondering if she wanted to continue living, are never far away.

After trial and error, Kosinski found the right mix of drugs to keep Piecz’s disease in check. But she is grateful for the patient-engagement protocol his practice uses to monitor her symptoms remotely every month.

“It gives me peace of mind that I’m connected with him,” she says. “He is having a look at me every month even though I’m not going in for an appointment.”

HHS is evaluating Project Sonar—the care management program that Kosinski and his group uses—as the basis for one of its new payment methods, and Piecz sent an email endorsement to the department.

“Crohn’s disease goes from zero to 60 in hours,” she wrote. “SonarMD has its finger on the pulse of the patient so that preventive measures are taken if they need be.”

Another patient sent an email saying Project Sonar is keeping her out of the hospital.

“I can’t tell you enough the difference this has made in my life,” that patient wrote. “I only hope everyone has the opportunity” for proactive care management.

Not likely.

That’s because of fee-for-service medicine and the relative value unit system that determines which services generate good money. For 30 years, that system has told physicians that procedures are more important than chronic disease management. Incentivized to become what Kosinski calls “colonoscopy factories,” most GI practices do not have the staff and infrastructure required to help patients manage a complicated disease that will last their lifetime.

“Frankly, there isn’t much money in it for them,” Kosinski says. “And it is much easier to just go to the endoscopy lab and crank the colons all day.”

By contrast, good IBD care requires interacting with patients more frequently—and with a delicate balance of persistence, patience, and compassion. Yet many patients with chronic illnesses are weary of interacting with medical professionals. Kosinski’s practice uses a mix of technology—an app that asks patients to report their symptom levels once a month—and nurses who call to check on those who do not respond.

Too much of a leap

Practices that offer chronic care management for IBD must invest in team-based care, and the team can be large. At Vanderbilt, for example, after a psychosocial assessment, a nutrition assessment, and a psychological assessment, a new patient is examined by a gastroenterologist—and then meets with a pharmacist to be educated about the drug regimen.

“And at the very end of the visit, the social worker will come back in and wrap up any loose ends and become the central point of contact for the patient,” says Schwartz, the director.

On future visits, patients see whichever members of the team are appropriate. “We know that about 40% of patients will have significant anxiety and depression, and that dramatically affects outcomes,” he says. “They can see that provider during their medical visit so there is no stigma of going to a separate mental health visit.”

At Illinois Gastroenterology Group, the Project Sonar care model works differently but has similar “whole-person” goals. For starters, patients are assessed for depression and anxiety, psychosocial issues, and biological markers of risk for severe IBD. About 75% of patients consistently respond to the monthly “ping” from the phone app; those who don’t will get a call from a nurse care manager to check on their health status.

“Patients with chronic disease flirt with the edge all the time,” Kosinski says. “They need a little hovering. And we need to intervene even when the patient doesn’t think they need intervention.”

While most IBD specialists know this, few are prepared to either hover or intervene. Most are not equipped to have a social worker contact a patient’s employer to explain why the patient will miss fewer days of work if certain accommodations are made. And it’s very rare for a gastroenterologist to have a psychiatrist on site.

For most GI practices, it’s all too much to expect. Their leaders worry about the financial viability of hiring extra staff to address patients’ psychosocial issues, Schwartz says. And because most physicians receive scant education about behavioral health in medical school, the idea of integrating psychiatric services is way beyond their comfort zone.

“I go out and preach the importance of this and how much more rewarding their practice will be if they do this,” he says. “But I think it’s sort of a leap.”

Where payers come in

Like many conundrums in health care, the challenge of improving IBD care stems from the way America’s health system pays for care. Physicians know what they should be doing but most cannot afford to do it without more money from insurers. And payers are reluctant to pay more because they don’t fully trust that the physicians will deliver on their promises of better care at lower overall cost.

That’s why another stakeholder group is paying to test innovative care models that integrate medical and psychosocial care. “The pharmaceutical industry is paying for these studies,” Reiss says. “For them, the gain is more appropriate use of their drugs.”

The funding may also be a way for drug companies to curry favor with doctors who are in a position to prescribe a medication worth millions in sales.

Reiss’s IBD Support Foundation developed a standardized model to embed psychosocial care into an IBD practice, and it has been implemented in practices at University of California–San Diego, Mayo Clinic, University of Southern California, Texas Digestive Disease Consultants, and Vanderbilt. Each of those practices received funding for the services from pharmaceutical grants.

Some payers are stepping up their support of a broader approach to IBD care in hopes that investing in improving care will cut costs in the long run by heading off hospitalizations, trips to the ER, and possibly use of expensive medications. The University of Pittsburgh Medical Center is integrated with UPMC Health Plan, the largest insurer in the Pittsburgh market. When health plan analysts noticed that members with IBD were generating some of the insurer’s highest per-member per-month costs, they called for a brainstorming session.

“The health plan said ‘Look—if you could add staff and look at this from a holistic, whole-patient point of view, what would you need?’” Regueiro says.

He pointed to Eva Szigethy, MD, one of a relatively few psychiatrists focusing on behavioral therapy to improve outcomes for gastroenterology patients. Director of the Medical Coping Clinic at Children’s Hospital of Pittsburgh and clinical director of the Visceral Inflammation & Pain Center, she joined Regueiro to start the Total Care–IBD specialty medical home.

With $500,000 a year in financial support from UPMC Health Plan, they hired nurse coordinators, nurse practitioners, a dietitian, and a social worker—and the health plan lends the time and expertise of its own nurses, social workers, and health coaches.

After the first year, patients enrolled in the medical home reduced ED and inpatient utilization (see “Payers Move To Support New Models of IBD Care,”) and improved significantly on four quality-of-life measures.

Kosinski admires UPMC Health Plan’s enthusiastic support for the program—and he calls it unusual. When he first approached Blue Cross Blue Shield of Illinois, the major insurer in his own market, to discuss new approaches to IBD care, arms were not exactly outstretched.

“IBD goes under their radar screen,” Kosinski says. “Most insurance companies are focused mostly on cardiovascular disease and diabetes.”

Lawrence Kosinski, MD

Project Sonar cut costs of treating IBD patients the first year by 10%, says Lawrence Kosinski, MD, who developed the program being used by Blue Cross and Blue Shield of Illinois.

Nonetheless, when Blue Cross Blue Shield of Illinois provided the data he needed to understand the way his patients with IBD were using health services, Kosinski’s jaw dropped. More than half of the money that BCBS of Illinois spent each year on his patients with IBD was for complications—bowel obstructions, colostomies, and others—that required inpatient care. Only 3.5% of its outlay for those patients went to Kosinski’s physician practice. Fewer than a third of the patients hospitalized for a Crohn’s complication had seen their gastro­enterologist in the 30 days before the admission.

What if gastroenterologists could help patients manage their IBD and avoid expensive complications? That got the insurer’s attention.

The Illinois Blues offered a contract that pays for proactive chronic care management and rewards Kosinski’s practice for lowering the total cost of caring for IBD patients while improving outcomes. The insurer is working to spread his Project Sonar to GI practices across the state, but other payers are slow to take it up.

“We have presented to numerous Blue Cross plans around the country, and we haven’t gotten a bite yet,” Kosinski says. “It’s like pushing on a glacier, but we keep pursuing it.” Still, pushing on a glacier is easier than convincing physicians to change their practices in a way that, without major payer support, will ruin them financially.

“I don’t want to sound negative about doctors, but they still make money by seeing more patients and doing more procedures,” he says. “You have to have the payers change the game. And then the providers will adapt.”

Payers move to support new models of IBD care

The best way for insurers to support chronic care management for patients with IBD is not yet clear. Early efforts include a shared-savings payment model and cash support for team-based care.

Care delivery model #1

Blue Cross Blue Shield of Illinois uses an intensive medical home contract to support a new care-delivery model for patients with Crohn’s disease and ulcerative colitis. Illinois Blues is in the third year of its arrangement with Illinois Gastroenterology Group in suburban Chicago and has recently entered into similar contracts with three other practices.

Under the contracts, the physician practices are paid a care-management fee and are eligible for adjustments in that payment if they reduce the overall costs of care and improve outcomes for IBD patients while using Project Sonar, the care-management program developed by Lawrence Kosinski, MD, and others at the gastroenterology group.

In addition to monthly “pings” via smartphone, the program hinges on a nurse care manager who assesses the patient’s medical and psychosocial needs, develops and monitors an action plan, helps to coordinate care among the patient’s providers and, when needed, connects the patient to a physician for immediate evaluation of emerging problems.

The benefits accrue to patients and payers alike. For the year that ended Nov. 30, 2015, a group of 185 patients enrolled in Project Sonar had 10% lower costs than the previous year, according to data that Kosinski presented at Digestive Disease Week, one of the major professional meetings for gastroenterologists. Their inpatient costs fell by 57% because they had fewer health crises requiring admissions, while the costs of infusible biologics increased by 9%, according to Kosinski.

“We’ve found $6,000 in savings for each patient who actively engages with the IMH [intensive medical home] via the smartphone care coordination tool,” Donna Levigne, the insurer’s divisional senior vice president for health care delivery, said in a written response to questions.

Reviewing the first two years of performance under the group’s shared-savings contract, Kosinski sees how proactive chronic care management is changing health care utilization, but there’s also a problem. Inpatient costs drop substantially—for his practice, they are down by about 60% over two years—but drug costs increase.

“We’re seeing a lot less morbidity, but we’re seeing a dependence on very expensive biologic medications,” he says. Overall costs are 8% to 10% below what they were for the same patients before they enrolled in Project Sonar, but significantly below the costs for a control group, Kosinski says. Data that compare Project Sonar patients to a control group are still being analyzed. “These are very expensive patients to treat, but they’re less expensive—even with the use of biologics, as long as they are on the care-management platform.”

Beyond private payers, the federal Physician-Focused Payment Model Technical Advisory Committee has recommended Project Sonar as an Advanced Alternative Payment Model under MACRA. The recommendation is under consideration by HHS.

Care delivery model #2

At the University of Pittsburgh Medical Center (UPMC), the Total Care–IBD speciality medical home involves a care team that includes a psychiatrist, a social worker, nurse coordinators, certified nurse practitioners, and a dietitian. Following the tenets of population health management, Total Care–IBD serves as the principal provider for high-utilizing IBD patients, responsible for all aspects of their medical, behavioral, and psychosocial care.

UPMC Health Plan provides about $500,000 a year to the Total Care–IBD program. The notion is that behavioral and psychosocial support can lower overall costs of care.

When a three-year pilot launched in July 2015, its co-directors—gastro­enterologist Miguel Regueiro, MD, and psychiatrist Eva Szigethy, MD—were shooting for a 2% reduction in emergency department visits and inpatient admissions. In fact, ED visits fell by 52%, and hospitalizations by about the same proportion, Regueiro reported in a presentation last fall at the American College of Gastroenterology’s annual meeting.

Regueiro says behavioral health services are responsible for those results, at least in part. Whether that decreased utilization will continue over time remains to be seen. Chronically ill patients sometimes have trouble sticking with therapy, and the Total Care–IBD team is looking for ways to keep adherence high.

“We’re doing a lot of remote telepsychiatry and remote monitoring for their psychosocial care,” Regueiro says. “So we’re not asking patients to come into the office and that seems to be engaging them longer term.”

UPMC and the health plan are looking for a payment method that will sustain the medical home care model after the pilot ends next summer, says Regueiro.

Lola Butcher writes about health care policy and business topics. She lives in Springfield, Mo.


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