Top 5 Questions From Patients With IBD

Emily Block, APRN, from Northwestern Medicine, reviews the 5 most frequent questions that patients with inflammatory bowel disease ask of her and other APPs in IBD centers and what she does to provide the best answers.

TRANSCRIPT:

Hi, everyone. My name is Emily Block. I am a IBD nurse practitioner at Northwestern Medicine at the Digestive Health Center here in Chicago, Illinois.

So what I'm going to be talking about today is what are the top 5 phone calls that I receive from patients. Before I get into the top 5 questions that I typically get from patients, having an APP—a nurse practitioner or a physician assistant—is so crucial to the treatment team. They are an integral part of the team and they can help increase access for patients, prevent hospital admissions, decrease ER visits.

One of the most common questions that patients ask is, “I'm flaring, what do I do?” And so the first thing that I want to keep in mind when a patient is telling me this is, what is flaring meaning to them?

I want to know what the patient is experiencing at this time and how does it compare to their past flares. And so I ask a lot of questions, the basics of you know how many bowel movements are you having per day, abdominal pain, rectal bleeding, nocturnal bowel movements, any other extraintestinal manifestations, any recent travel, sick exposure. Also, it's really important to keep in mind patient's medication. What medication are they on? Are they compliant with their medication? And just getting like that basic overview.

And so you need more information from a patient to be able to determine next steps. And it requires a lot of chart reviewing and really talking with the patient and understanding what they're feeling and what they're going through before you can determine what's the best next step.

Another frequent question that I get is “I can't get my medication.” So similar to when patients are flaring, I want to find out why. Are they 26 and they just got off their parents’ insurance and they didn't know that they're on a biologic, that they need a new prior authorization? Are they out of refills? Is there an issue with the pharmacy?

It could be due to high cost. Maybe patients can no longer afford the medication. So figuring out what resources we can provide as your institution like the social worker. Have you looked at GoodRx if this is a nonbiologic medication? Or other, different compounding pharmacies? Online, looking for coupons? And patient assistance programs, of course, in reaching out to drug companies to see if they have any support to be offered for patients.

I would say number three, and in no particular order, these questions, is patients asking, “What can I eat? What should I not eat?” There has been some studies in the past, like the DINE study that looked at the specific carbohydrate diet versus the Mediterranean-style diet. There's not enough research on it, and it's really important, and patients feel a lot of times, you know, well, diet is something that I can control. And, you know, so much of my IBD is out of my control. If there's something that I can do to make my disease or my symptoms better, I want to do it. I tailor it, you know, to every specific patient.

For the most part, it's a general statement to tell patients to, you know, whole nutritious foods. But then at the same point, certain patients are supposed to avoid certain foods. If a patient has stricturing Crohn's disease with a known stricture narrowing, we're worried about obstructions. And so in that individual, we may not want them to eat high fibrous foods or like the skin of certain fruits and vegetables, or corn. But for the most part, I do have to sit down with the patient, look at what their disease history is and then work with them. And at my,institution, I'm fortunate enough to have dieticians that are familiar with our IBD patients. And so looking into your community to see what resources you may have, to see if you can align patients with a provider who specializes in nutrition.

Procedure billing is another question. I really do feel for my patients. They have a chronic disease and associated with chronic diseases.  And, you know, as part of their disease and colorectal cancer screening surveillance, there are different procedures and tests that they have to undergo, infrequent colonoscopies or whatnot, imaging studies. And so I get it that patients are worried about the cost. And so a lot of times they're calling asking about procedure billing. “My insurance told me that if this is coded as screening that it'll be, you know, it'll be covered.”

It's also different at every institution, but giving patients the CPT codes and the ICD -10 codes to provide to their insurance company, and then they can speak with the insurance company to find out what their estimated out-of-pocket cost is, as well as speaking to my institutions, financial counseling, or billing department.

I would say number 5 question. that I received from patients is,” I was just prescribed X. Can I take it?” I love getting this question because it means that patients are listening to me. We tell patients to be wary, you know, about taking NSAIDs, about taking antibiotics and to let us know if they're ever prescribed a medication from another provider.

The big things for patients to avoid that I tell them are NSAIDs. So when patients are undergoing ortho procedures, to let us know or they have any sort of ortho-related injury because we know that that specialty likes to prescribe a lot of NSAIDs.

Antibiotics—clindamycin is the one absolute no-no just due to the increased risk for C. diff infection. And the dentist likes to prescribe that a lot, I find, but in general I do want patients to let us know when they're prescribed antibiotics. So that way we can let them know, yes, it's okay. This is what you should be aware of. If you start to experience diarrhea, let me know. And then we'll determine, okay, do we need to stop the antibiotic to test for C diff or another stool infection? Also in terms of the derm-related field, Accutane, we tend to ask patients to avoid that medication. So when patients are prescribed acne medication, we want to know.

When it comes down to it, it's really making sure that you're listening to the patient and taking a good history and getting the whole story.