Inflammatory bowel disease (IBD) patients who didn't take their medication or otherwise comply with their doctor's instructions for reasons outside their control required surgery significantly more often than those who didn't because of personal choice, according to a Houston Methodist study.

Preliminary study findings, presented at the Digestive Disease Week national conference in San Diego this week, indicate that insurance restrictions and financial difficulties are more costly physically and financially than patient complacency or experimentation with non-traditional therapies.

"What these results suggest is that, when compliance is up to the patient, and they begin to see their health is on the line, they pick up the phone, make an appointment, get back on their medicine and typically can get their condition back under control," says Dr. Su Min Cho, a gastroenterology resident at Houston Methodist and the study's principal investigator. "For the patient who is noncompliant due to factors outside their control, there's no back-up plan other than going to the emergency room and getting a surgery."

Study participants had either Crohn's disease or ulcerative colitis, the two main forms of IBD. Both are chronic immune-mediated conditions that require medication, frequent follow-up appointments, routine blood work and surveillance tests such as colonoscopies. Compliance is as crucial as it is complex, with upwards of 40% of IBD patients experiencing relapse for avoidable reasons.

To better understand the internal and external factors influencing patient compliance — and find out whether the reason a patient is noncompliant makes a difference in their outcomes — gastroenterologists at Houston Methodist are studying intentional versus unintentional non-adherence among patients with IBD.

Dr. Cho says that surgery was probably the most serious result of unintentional non-adherence.

"In inflammatory bowel disease, it often takes a long time to find the right medication that controls the patient's disease without prohibitive side effects," says Dr. Cho. "When something is working, it can be very detrimental for the patient to suddenly stop taking it or lose access to it. There's not necessarily an alternative you can substitute in."

Unfortunately, it is not uncommon for insurance companies to stop covering medications they previously covered, or to change how much of it they will cover.

"Many inflammatory bowel disease treatments are expensive, especially some of the newer biologics and small molecules," says Dr. Bincy Abraham, who presented the study at Digestive Disease Week. "There is a process for appeals and exemptions, but it may take weeks to months. By then, the patient may be in a crisis, as the surgery numbers suggest. This is an important reason why we're doing this study, to see what impact these decisions have on patient care."

Regardless of intentional or unintentional non-adherence, the researchers found increased risks of infections, hospitalizations and the need to escalate medical regimens. However, when the non-adherence was unintentional, more patients required surgery than in the intentional non-adherence group.

Of course, surgery also leads to higher costs in both the short and long term.

"Any short-term gain that insurance companies may perceive they are getting by reducing medication costs will be undercut by the high cost of managing the patient through surgery and the long-term consequences of reduced gut length," says Dr. Abraham.

The most prevalent reasons for intentional noncompliance were medication side effects, desire to try holistic therapies and complacency. For unintentional noncompliance, financial reasons/insurance issues were cited more than 85% of the time. All patients in the study had health insurance.