CAREGIVER AND PATIENT EDUCATION

George R Thompson, III, MD: Now we will move to some points about caregiver and patient education. I have some questions, and then Rob Purdie from MyCARE will ask a question from the caregiver perspective.

Overall Education

George R Thompson, III, MD: I can imagine some of this dosing information would be confusing for patients and caregivers who might go home and google dosing without realizing this is pediatric-specific dosing. So, really engaging the caregiver and the patient in the education process is important. We’ve found it important to the adult population, but I’m sure it’s equally important and even more difficult in pediatrics. How do you approach that? How do you engage the patients and their families or caregivers in the whole treatment package for fungal infections?

Antonio Arrieta, MD: First, it’s very important to convey the seriousness of the disease. We discuss the pros and cons of the different agents, and we try to explain why we are going to choose a particular one. Often, my patients come in to see oncology for follow-up, either for the AML, ALL, or allotransplants. When I am following TDM, I can time their dosing with the timing of that oncology visit so I can check a trough level. Typically, these visits last for an hour or two, and often I can get a second level that would allow me to do an AUC. Although with isavuconazole, the levels are so consistent that it allows you to get an AUC out of that single level based on the long half-life. We strongly emphasize the safety of the agent. We look for interactions with other medications. We are constantly monitoring liver enzymes. If patients have interacting drugs, we’re monitoring an electrocardiogram.

Reducing the Risk of Infection at Home

George R Thompson, III, MD: I think it’s really a comprehensive package to explain the disease, the drugs, how they work, and why we’re checking bloodwork. All of those kinds of things can be quite different from what patients are used to. And then one of the things that really comes up is that the patients or their families can get very anxious about how to reduce exposure to some of these infections, which they know have a very high mortality rate. How do you counsel patients and their families about neutropenic precautions or things to avoid? We certainly get asked, “Can I garden?” We get those kind of questions. What’s your approach to those kinds of topics when you discuss this with kids and their families?

Antonio Arrieta, MD: It is very difficult with children George, because you’re making these children better so that they can be children. Which means that you want to make them better so they can go to the park, so they can go to the beach. So primarily the question that comes up often, for which I have very little data to answer, is, should we get a high-efficiency particulate air (HEPA) filter for the house? We counsel that it’s not going to hurt, but it’s going to cost you a lot of money. So we basically try to encourage them to avoid large crowds and to certainly not do any construction or specifically demolition in the house. And that’s about it. George, do you have other approaches to these?

George R Thompson, III, MD: Yes, there’s obviously a lot of guidance for neutropenic populations. I think, frankly, a lot of it’s not very evidence-based—it’s drawn from case reports—no cut flowers in the room, those kinds of things. There’ve been reports of Aspergillus from a cactus in a patient’s room. And again, I brought up cannabis earlier a little bit. We really have tried to emphasize that with patients. We saw a big increase in Aspergillus infections after legalization of cannabis for medical use in California and have really tried to counsel patients, but kids could be exposed to that from other people around, or certainly some of the older pediatric patients may be using that themselves. And then gardening, we generally try to caution against that. That’s not as big an issue for kids, but they certainly want to enjoy time with their friends outside and run around and play sports. And so those are all things that are risks.

You mentioned avoiding larger crowds and potentially wearing a mask. Those are potentially going to reduce infections. But the major one is construction, as you brought up, and home improvement projects and things like that are really important to avoid for our patients. It’s really important, I think, for patients to have good resources available. We often give them a lot of educational material, but online resources are particularly helpful. MyCARE Foundation is a patient-led advocacy group. They try to counsel patients in a productive way and to not add anxiety and fear on top of their treatment course. And I think that it’s really essential to make sure people have those resources (fightfungus.org).

Setting Expectation for Recovery

Rob Purdie, Patient Advocate at MyCARE: One of the things that patients are concerned about is being a kid. But what parents really want to know about is what recovery is going to look like and how do you define success for a parent? That’s something that I’d really like to hear about.

Antonio Arrieta, MD: You mention a highly important point. So many children have died of this that once we save them from the acute event, we really don’t know much about what is coming next. For example, parents typically ask me, “So how long are you going to treat my child?” And I typically tell them until they go to college. Well, now some of my patients are already in college, but the point I make is “long enough.” We never know when to stop. We do not have guidance on when to stop. There is a 3-month length of treatment recommendation for patients who respond well and exhibit complete or partial resolution. But it takes a lot of guts to stop treatment on a patient with AML who has had Mucor who is about to go into a third course of chemotherapy. Or if they’re going to go for transplant after completing two courses of chemotherapy and they have a history of aspergillosis, we explain to them that you are going into secondary prophylaxis. Now I counsel them that I know you are going be immunosuppressed; you’ll be neutropenic for 17 to 20 days. But then you’re going to have to deal with all the immunological abnormalities that transplant triggered, particularly if you develop GVHD.

Now we’re talking about months of treatment with severely immunosuppressive agents. I can tell you, Rob, that I honestly don’t know the impact of some of these new monoclonal antibodies, JAK-2 inhibitors, and other agents on the incidence or relapse rate of fungal infections. I tell my patients that these fungi do not leave you. They stay with you. So, if you can’t contain them, I need to do that for you. I have had the joy to stop antifungal agents on several patients, more recently on a kid who went to Florida to go to medical school who had Aspergillus in the brain and we had him on isavuconazole for 4 years. I was sharing that we had a young boy that I sent home basically to go on hospice care because he had failed amphotericin B and had disseminated Mucor. It was identified on the skin, the lungs, etc. We sent him home on isavuconazole. That was eight years ago. He was 13 years old at the time. So now he has finished his chemotherapy, and he’s doing well. So when he finished about nine months ago, we stopped the isavuconazole, which is something that we have not discussed, which is the long-term safety of isavuconazole.

I have had patients with CGD and Aspergillus infections. I had a young boy with vertebral aspergillosis that had collapsed two cervical vertebrae and if I did anything wrong, he was going to be quadriplegic for the rest of his life. So, after two years of isavuconazole, he moved to Texas, but when the parents asked me, “When are we going to stop this?” I said, “Never.” I told the parents their son has an immune deficiency that is never going to go away. It’s not like cancer where if treatment is successful, and chemotherapy is no longer necessary, then you’re done with your immune deficiency, and I can stop antifungal treatment. When I have a patient with CGD, the immune deficiency is forever. So I have no way to stop those agents. So you bring a hugely important point.

George R Thompson, III, MD: I want to just thank you, Antonio. I’ve learned a lot, just the big differences between treating pediatric patients compared to adults. Thank you so much for your knowledge and willingness to share that with me and certainly our audience here. Thank you so much for your time, and I hope everyone enjoyed this presentation.

Antonio Arrieta, MD: George, I want to thank you immensely for the opportunity. I have shared with you many times that everything I know I learned from you, so well. It’s certainly a pleasure for me to be sitting and chatting with you about all these very interesting topics and very challenging reflections.

TABLE OF CONTENTS

Faculty

George R. Thompson, III, MD

Professor of Medicine
University of California, Davis, School of Medicine
Sacramento, California

Dr George Thompson is a Professor of Medicine at the University of California, Davis, School of Medicine (Sacramento, CA) with a joint appointment in the Departments of Medical Microbiology and Immunology, and Internal Medicine, Division of Infectious Diseases. Dr Thompson specializes in the care of patients with invasive fungal infections and his research interests are in fungal epidemiology, pathophysiology, diagnostics, treatments, and outcomes.

Dr Thompson focuses on the fungal diseases caused by Aspergillus, Candida, and Coccidioides spp. These fungi are of both regional and global importance. Aspergillus infections continue to emerge in new patient populations (e.g., COVID-19), Candida spp. are the 4th leading cause of bloodstream infections across the world and carry substantial morbidity and mortality, and coccidioidomycosis affects over 450,000 people per year within the Southwestern United States. Our studies focus on the evaluation of new antifungal agents, the pathophysiologic mechanisms of antifungal therapy, including both the development of resistance and the biologic underpinnings of adverse drug reactions.

Dr Thompson served as the co-chair of the National Academy of Sciences Symposium on Coccidioidomycosis in the fall of 2022, and as an advisor to the World Health Organization (WHO) for fungal priority pathogens. He has additionally served on multiple international guidelines that are highly utilized by clinicians globally. He was formerly the educational chair of the Mycoses Study Group Education Committee (MSGERC) – and was responsible for the development of fungal educational content to practitioners globally and the design of pivotal clinical trials. He is currently the president elect of the MSGERC. He has served on both the CDC and the National Institute of Allergy and Infectious Diseases Special Emphasis Panels as a grant reviewer and on the FDA Antifungal and Coccidioidomycosis Advisory committees. He has also been a congressional consultant for the Valley Fever Task Force, and the Congressional Pasteur and Forward Acts focused on antifungal and antibacterial resistance.

Antonio C. Arrieta, MD

Division Chief
Pediatric Infectious Diseases
Children’s Hospital of Orange County (CHOC)
Orange, California

As a nationally-recognized expert in pediatric infectious disease, Dr. Arrieta specializes in the treatment of serious community-acquired and nosocomial infections and has added expertise in HIV medicine. His main area of research centers on investigating invasive fungal infections and new antifungal agents. He is also investigating the immune response to infections in premature infants. Dr Arrieta is a respected physician leader and currently serves as president of the medical staff as well as Division Chief of Pediatric Infectious Diseases at Children’s Hospital of Orange County (CHOC).

A prolific author, Dr Arrieta has written many poster presentations, articles, and book chapters. He has coauthored more than 50 poster presentations for meetings and conferences including many of the past Interscience Conferences on Antimicrobial Agents and Chemotherapy and Annual Meetings of the European Society for Paediatric Infectious Diseases. His more than 50 articles have been featured in journals including the Pediatric Infectious Disease Journal, the American Journal of Surgery, and the Journal of the American Medical Association. He has written and edited book chapters in the Textbook of Pediatric Infectious Diseases, Pediatric Adolescent Medicine, and Pediatric Hospital Medicine, among others.

Dedicated to clinical excellence, Dr Arrieta is board certified in pediatrics and pediatric infectious diseases. Prior to joining CHOC, Dr Arrieta attended medical school at Universidad Peruana Cayetano Heredia in Lima, Peru. He completed his residency at Southern Illinois University and conducted his fellowship training in pediatric infectious diseases at Miller Children’s and Women’s Hospital in Long Beach and University of California, Irvine.

MyCARE thanks Astellas for sponsoring this activity.

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