PACE UC CASE—BARRY
DR. STEVEN BRANT: Barry is a 43-year-old man who recently presented with persistent diarrhea and occasional blood in his stools. Workup identified elevated inflammatory markers and mucosal changes in his left colon, consistent with ulcerative colitis. His family history is significant for hypertension. Barry notes that his mother often had problems with her digestion, though he does not know her diagnosis. Other than ulcerative colitis, he is in good health, although he smokes a half a pack of cigarettes a day and drinks socially. Barry recently lost his job as a steelworker for a local contractor. He has no health insurance or prospects for work. When his ulcerative colitis was first diagnosed, Barry demonstrated limited health literacy and a poor understanding of the disease and its treatments. His main concern was the ability to pay for medications, as his only income at the moment is unemployment insurance and a small stipend from the union. MALE DOCTOR: Hey, Barry, how are you doing? BARRY: Hey, Doctor. MALE DOCTOR: Barry, the test results suggested you have a condition called ulcerative colitis, which is an inflammatory disease of the colon. You will require treatment to address the inflammation and stop the diarrhea that you’ve been experiencing. BARRY: Oh, I mean is this serious or. MALE DOCTOR: Well, ulcerative colitis can be managed
successfully, but we do need to get you on an appropriate treatment. BARRY: I lost my insurance, you know, ‘cause I lost my job, is there something cheap I can take, you know, maybe something over the counter or. MALE DOCTOR: The fastest way to get you better is to use two medications, an oral drug, which comes as a tablet, and a topical therapy that is administered as an enema. BARRY: An enema, you mean I’ve got to put it in my. MALE DOCTOR: It’s no big deal. I’m going to write you a prescription for oral mesalamine, which you have to take three times a day, and a steroid enema, which you are going to have to use daily for now. And I want you to hold the enema inside you for 30 minutes for it to be effective. BARRY: Do I really need this, it’s.is this going to be expensive? MALE DOCTOR: Using both agents is the most effective way to stop your diarrhea. Once the symptoms resolve then we can talk about maintenance therapy. BARRY: Yeah. MALE DOCTOR: I want you to see the office staff before you leave and get a follow-up appointment. BARRY: Okay, all right. Thank you, Doctor.
DR. SHARON DUDLEY-BROWN: Okay, once again, a question, do you think this visit will result in the patient being adherent to this therapy,
one for yes, two for now, and three for unsure? Okay, most of you said no, interestingly, a small number said yes, and a small number were sort of unsure. So does anybody want to comment why they chose the one that they did choose? Yes, in the back? FEMALE VOICE: The cost was never addressed. Working in a free clinic, I know that for our patients, just getting on something as simple as an inhaler can mean a major decision for them. This doctor just fluffed it off, besides which he didn’t address his concerns about the treatment, which I mean being a nurse and giving an enema, it’s no fun. You can’t brush it off like he did. DR. SHARON DUDLEY-BROWN: Right. So you bring up two good points, one is the issue of cost, and we do know that when cost is a problem, i t doesn’t matter how many times you tell them that they are going to have to take their medication, they’re not going to take it because they are not going to be able to afford it. So that participant is very much correct in that this has to be addressed in some way. And I think her second point was also good, in terms of the enema, is that you can’t just write a prescription for an enema and give the prescription to the patient and expect him to take it. Now in a busy setting you may not have yourself a lot of time, if there is anybody else that can explain, but briefly stating that for the first night, use half the normal dose, and tell them that they are not going to be able to hold it for very long and then this does get better over time. Quick things like that can be a lifesaver, because, as she mentioned, all the doctor did was give them the prescription and that was it, with really no more information. Anybody else have any comments about why they chose the response that they did for this? Yes, someone at this table?
FEMALE VOICE: I think the physician may have been too busy to go into the details, but he could have appointed or assigned a nurse or somebody who would follow up, and the social worker to get into the situation about the affordability, to get the drug company to provide the drug at the cheaper rate or whatever, whatever could have been done or can’t could be done. That needs to be arranged and he has no time but he can assign people to do those jobs. And make sure that patient understands the importance of treating and otherwise losing himself further, that he won’t be able to get employment, if he becomes anemic that is even worse. All this has to be emphasized correctly and in detail. The rest of the things can be assigned to someone else. DR. SHARON DUDLEY BROWN: Great. That was a great response. So again, if there is anybody else in the office that can do some of these things, whether it be education, she mentioned social worker, but most people don’t have immediate access to a social worker. But again, she mentioned ways to help out in terms of the cost, or samples, or pharmacy cards, and those sorts of things. My slides are going to show some of this, she also mentioned about talking to the patient about how his symptoms are affecting his life. This is a guy who is a little bit down and out right now, because he doesn’t have a job and therefore he doesn’t have insurance, and he can’t afford this medication. And he was just told that he has a new diagnosis of ulcerative colitis and that he has to get two prescriptions filled. That’s a lot of complicating factors, and as she mentioned, if you can associate the medications with improvement and perhaps, getting a job, that might make him a little more adherent to taking the medical therapy. I agree with everything that was said, thank you. Anybody else have any comments? Okay, well we’re going to move on and we’re going to see what actually happens to Barry.
DR. BRANT: Barry was prescribed mesalamine 1.2 grams three times a day, plus corticosteroid enema once daily; however, he did not successfully retain the enema and gave up after one try. He continued with oral mesalamine for a month, but found the medication to be too expensive on his limited income. He continued to have occasional loose stools during treatment. BARRY: I got a little better taking the pills, I guess I took them for about thirty days, but I just couldn’t afford them. It’s not like they fixed me anyway, I mean I still have to run for the bathroom sometimes. And now I’m afraid to go out in public because I always have to find a bathroom somewhere, not that that matters because I can’t find any work. Oh, and that enema, forget that. They made me buy a week’s supply and I used it once. I mean I just couldn’t keep it in, what were they expecting, anyway? DR. SUNANDA KANE: Many patients do not have adequate resources to understand and manage their disease, and it is important to figure this out early in the relationship so you can design a plan that is additive rather than dumping a lot of information on a patient all at once. Ask him what sort of medication coverage he has, and if it is severely limited, then offer the least expensive therapy with an explanation of why it may not work so he doesn’t have false expectations. The minute a patient starts to ask about cost, even before side effects, may be a clue that you are going to have an issue. All patients should know about the existence of the Crohn’s and Colitis Foundation of America, the CCFA. There are chapters in most states or regions, and it is an excellent source for up to date, unbiased information for those with access to a computer. 1-800-MYGUTPAIN is an easy phone number to remember and is a phone line for direct questions. When giving information, stop periodically and have the patient
recite it back to you so that you know that they understood. Avoid terms like mucosa, induction, and dysplasia, as only those with a medical background are going to understand what those terms mean. Write things down for the patient or type them out on a computer that you may have in the office so that they can take home the main discussion points.
DR. SHARON DUDLEY BROWN: Okay, our audience has already suggested some things, but does anybody else have any other thoughts besides the ones that have been discussed by Dr. Kane, as well as the participants here in terms of helping out Barry? Okay. Back to the time-saving strategies for providers, the one key point for Barry, is to really do a drill down in terms of what he’s taking, what’s the dose, does he miss the dose, and if so, how often. In this video Barry volunteered the issue about only taking the enema once and stopping his pills after 30 days. It’s unclear whether he was prompted by the physician asking these questions, but it is very important that these questions are asked to ascertain the notion of adherence as well as of persistence. Now we’re going to rewind and have Barry see the physician in an optimal fashion.
MALE DOCTOR: Barry, how are you doing? Have a seat. Barry, the test results suggest that you have a condition called ulcerative colitis, which is an inflammatory disease of the colon. You will require treatment to address the inflammation and to stop the diarrhea you’ve been experiencing. BARRY: Well, it sounds serious.
MALE DOCTOR: Ulcerative colitis is an inflammatory bowel disease, which means you have inflammation in your colon that causes you to have loose stools and sometimes blood in your stools. So, yes, it can be serious if left untreated because you could lose significant blood over time. We also want to control the inflammation because chronic ongoing inflammation can increase one’s risks for developing colon cancer. BARRY: What, you mean I’m going to get cancer now? MALE DOCTOR: Research suggests that people with ulcerative colitis have an increased risk for cancer, the way that ci garette smoking increases the risk for lung cancer. Again, treatment for ulcerative colitis has been shown to reduce this risk. BARRY: I lost my job and I don’t have any insurance, is there something cheap I can take, you know, maybe something over the counter? MALE DOCTOR: Well not over the counter, no, you will require prescription medication. The goal of this treatment is to reduce the inflammation in your colon and to stop the symptoms that you’ve been experiencing. There are less expensive options for treatment and we can discuss those, for now I think the fastest way for you to get better is to use a combination therapy that consists of an oral drug, which is a tablet, and a topical therapy that is administered as an enema. BARRY: An enema. MALE DOCTOR: That’s right. Some of the treatments for this condition are most effective when they are applied directly to the lining of the colon, and to do this you have to administer a fluid enema containing the medication. You may find it difficult to hold all the fluid in the first few times. It’s okay. It’s okay. Hold it as
long as you can, up to 30 minutes, and over time I think you’ll find it easier to hold the enema in. BARRY: Yeah, well, it all sounds like a lot of fun and everything, but I mean what about the cost. I can barely afford this visit. MALE DOCTOR: I understand your concern. There’s a drug called sulfasalazine that is available as a generic, which makes it less expensive. It acts by reducing the chemicals that cause the inflammation in your colon. Barry, do you know if you’re allergic to any drugs, for example, sulfa drugs? BARRY: No, not that I know of, no. MALE DOCTOR: Okay. I’m going to ask you to take two pills, three times a day, for a total of 3 gm a day of sulfasalazine. You may experience some side effects, upset stomach, loss of appetite. If these occur, they’re going to get better over time, so continue taking the medication. You may also notice a yellow/orange discoloration of your urine; it’s normal, nothing to worry about. I also want you to take a supplement that contains folate, because sulfasalazine can cause your body to lose folate, and folate is an important vitamin. BARRY: Are you trying to make me better or worse, Doctor? I mean, that’s a lot of medicine, and I just don’t know if I can afford all of this. MALE DOCTOR: I know it sounds like a lot right now, inexpensive folate supplements are available, just ask your pharmacist for help. If you find that both the oral and the topical therapy are getting to be too much, call me and we can discuss how we can get you treated. It may be possible for us to get discounts or coupons from the drug companies, and we can look into that if necessary, okay? But in the meantime, let’s try this combination therapy
approach, okay? If it’s successful then we can stop the enemas and possibly lower the dose of sulfasalazine and that will be cheaper for you over time. I know that we covered a lot today, let me write out a few notes that you can take with you and review later, okay? If you have any questions at all, take a card from up front, my business card, and give me a call. BARRY: Okay. MALE DOCTOR: Okay, Barry? BARRY: Thank you, Doctor. MALE DOCTOR: Good luck. BARRY: Thanks.
DR. SHARON DUDLEY BROWN: Okay, another question again for you. Do you think that you can incorporate these persistence and adherence strategies into your practice: 1) yes; 2) no; 3) unsure. Okay, 84% said yes, we still have a no, and 12% were unsure. I’m curious to know about the people who voted unsure. Does anybody want to comment on why they chose that response? Any unsure, how about the person, I think it was just one, who chose no? Not to put you on the spot. Anybody have any comments? Yes. FEMALE VOICE: Both the cases the physicians give their numbers to the patient, I don’t think that’s going to happen. Call me, they said. DR. SHARON DUDLEY BROWN: Phone numbers?
FEMALE VOICE: Um-hmm. DR. SHARON DUDLEY BROWN: And your impression is they’re not going to all? FEMALE VOICE: No, no, the physicians won’t give the numbers to the patients. DR. SHARON DUDLEY BROWN: Oh, from your experience you’re saying? FEMALE VOICE: Um-hmm. DR. SHARON DUDLEY BROWN: Oh, okay, that’s interesting. FEMALE VOICE: The possibility of getting alternate insurance such as medical assistance or whatever the state has could be arranged in such cases because it’s a long-term disease, and he’s not certain when the job is going to come. So he needs alternate insurance by the state, whatever, whatever. DR. SHARON DUDLEY BROWN: Right, so your point is, yes, he will definitely need some sort of assistance with his medications. You know, I think the notion of going to a generic, we don’t have a lot of generic options in inflammatory bowel disease treatment, but sulfasalazine is one of them in terms of the tradeoff. And the recommendation, as Dr. Kane said, is if you do want to prescribe a generic or maybe not your number-one choice of medications, that you do talk to them about, you know, does this have any side effects, which this physician did talk about, or else what are some other reasons that you may have to escalate therapy if the sulfasalazine isn’t working. The other thing is, the doctor didn’t talk about dual therapy for ulcerative colitis, and there’s lots of data about dual therapy being superior to monotherapy for these patients, which would probably have been a helpful strategy.
So just to summarize the case for Barry, in terms of medications, as I mentioned before, addressing the issues with the enemas, really giving him as much information as possible. And as was mentioned before, is that if you can’t do it, having somebody else in the office be able to spend the time. Cost and insurance issues, acknowledge and link medications to an improvement. And as the audience participant said, link taking the medications to possibly getting a job, because that’s really where Barry’s mind is right now. We talked about using samples or discount coupons, any way that you can help the patient get the therapy. Support was mentioned before in terms of involving the family. As was mentioned on one of my previous slides, Dr. Kane talked about referring them to the Crohn’s and Colitis Foundation, where he can go to face to face support groups, or online chats with other people. Finally, think about having some sort of information packet or information available for new patients. As you could see, Barry just had this diagnosis of ulcerative colitis, which in an of itself takes a lot of information to explain. Barry’s point was about the cost, and I think he was so focused on that it was difficult for him to absorb the medical information. And then the only other word he heard was cancer. I think we can see with Barry that patients take away maybe specific items and don’t listen to the entire discussion. So it’s important to have not only the verbal discussion in the office, but also take-home written materials, especially for Barry, information about the diagnosis of ulcerative colitis, and perhaps information about the medications and how they can help him. We’re going to move on to our third and final case for this evening, and that is Rachelle. As you’ll see very quickly, Rachelle is another common patient that you probably see because Rachelle’s interested in getting
pregnant and wants to stop her medications. Dr. Lee will moderate this session.
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