Patient Follow-up and Pain Management in Sickle Cell Disease


Reflections on optimal approaches to patient follow-up, particularly regarding pain management and inherent risks in high-dose opioids.

Ifeyinwa Osunkwo, MD:
Pain management requires a lot of follow-up. In pediatrics, as a child you have a number of milestones you have to meet. Dr Shah, can you talk about how often a patient with sickle cell disease should be seen by their care team? A lot of providers are used for permanent care: I see you once a year, but that works only if you’re healthy and have no issues. On the other hand, you can’t bring them in every day because they have all these issues. What’s the best practice for the follow-up of adults with sickle cell who need all these things to decide and be prescribed for their ongoing care, and if they have chronic multiple organ issues?

Nirmish Ramesh Shah, MD: That’s a great discussion point, because a lot of patients are used to seeing a primary care doctor once a year and having 1 discussion. But for chronic disease, we want to see you a lot more. For patients on hydroxyurea, for example, we see them at least every 3 months to do labs, to assess how they’re doing, to see what their response is. Do I need to titrate the dose? Do I need to go up or down, because I am trying to keep them on the maximum tolerated dose, to try to get the best effect with the least amount of adverse effects. Then we must customize it—we have some patients we want to see a little more and during specific time periods. Let’s say they just got out of the hospital. We want to follow them right after they got out of the hospital. If we add a medication, we want to see them a little more often in that time after we start a new medication.

I don’t think I ever see a patient only once a year. The least I have scheduled is maybe twice a year for patients who have very minimal amounts of damage or complications. But I always leave in the system that we need to see them at least twice a year, because twice a year sometimes turns into once a year. I have to hold their hand loosely, as Dr Smith said, because I want to make sure I have your back. I want to make sure I’m there. It ebbs and flows, but I feel very strongly that they need to be seen at least 3 to 4 times a year, on average. With hydroxyurea, [we need to check labs] every 3 months. We need to make sure families and patients understand how crucial that is. In pediatrics, they’re usually good about having patients come in. As you said, Dr Osunkwo, all of a sudden you become 18 and you’re an adult. “I don’t need to come in because I’m an adult, I have things to do, I’ve got a boyfriend to see”—whatever it is. They need to understand that that’s not the case; their sickle cell hasn’t changed. Their mindset might have, so how getting them to understand the need for regular check-ups is very important.

Ifeyinwa Osunkwo, MD: To support that, there are data that suggest that between ages 15 and 25, there’s an activation of their disease that happens where their acute care use goes up and their mortality rate goes up. That segues with their coming to see their providers a lot less frequently. These could be addressed but are usually not. For that age group in particular you want to keep them even closer to you. They think they don’t need you, but they need you even more. Dr Shah talked about the frequency of follow-up. There are comorbidities that need to be seen even more frequently. JJ [Joshua] Field published and some others have said [that for patients with] chronic pain and high-dose opioids, [they should be seen] every week. I’m working with a pain specialist, a psychologist, a care manager. Dr Smith, can you speak to your practice of treating people who have a lot of pain—either a lot of acute care visits or lot of pain and a lot of high dose-opioids—and the morbidities surrounding that and how that should be approached? Who should take care of the opioids? Is it the primary care doctor or the sickle cell specialist. Our listeners want to know what their responsibility is when they see a sickle cell patient.

Wally R. Smith, MD: This is 1 of the leading principles of pain management in sickle cell disease. The patients don’t use same amount of opioids daily because their pain isn’t the same every day. It’s not regular; it’s not predictable. Patients run out early when they don’t use it the way they’re supposed to. Technically, that’s misuse in the textbook. I don’t call that misuse. I call that use, according to the pain, but they’re ashamed or afraid to tell their doctor that they did this. They then run out, and guess where they end up?

Ifeyinwa Osunkwo, MD: In the hospital.

Wally R. Smith, MD: Yes. I said all that to say this: sickle cell disease alone, but certainly sickle cell disease imposed on the disease of chronic pain, [uses some] of the highest [amounts] resources I know of for diseases, in terms of ambulatory management to prevent in-patient management. The reason why in-patient management in our program went down was because it went up on the ambulatory side. We have a nice graph to show you the inverse relationship between ambulatory visits, which can be weekly and can involve several specialties and several ancillary support providers.

May we mention for a moment community health workers? My God, where would I be without my community health workers? They are the first line of contact for most of my patients. Maybe you don’t need a doctor’s visit, so maybe you need to check in. You need some calls made for you; you need something done for you that’s kind of medical but kind of not. In an appointment, if you ran out of your prescriptions, if you need to tell somebody that you ran out of your prescriptions, the community health workers are that link. We have proven their value in case management time and again.

The advanced practice providers do the case management and decide about refills for prescriptions and the need to go to the emergency department. You can talk people off the ledge a lot, and they don’t have to go to the emergency department, or you can split them in the infusion center. Yes, it’s high-resource utilization, but it’s a failure when somebody is admitted for painful crisis. Appropriate management would be at home, and we’ll live with it if they must go through an infusion center. Our goal is to do it all at home. That’s where the pain is, so let’s manage it there. We don’t have good formulas for you, but we’re trying to get formulas for all these things. Just how much time does a high-needs patient need from community health worker? We want to know that because you’ve got to know how many to hire. If you have 400 patients, you need to know how many community health workers and APPs [advanced practice providers] to ask for. This is noble information, so we want to get it and have it out there so people can know what to expect.

Ifeyinwa Osunkwo, MD: That’s very insightful. The management of sickle cell imposed on chronic pain is 1 of the most challenging things that any provider is going to experience.

Transcript edited for clarity.

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