Rheumatology Network sat down with Mehret Birru Talabi, MD, PhD, to discuss the recent study published in ACR Open Rheumatology entitled, “Tough choices: Exploring medication decision-making during pregnancy and lactation among women with inflammatory arthritis.”
Rheumatology Network sat down with Mehret Birru Talabi, MD, PhD, to discuss the recent study published in ACR Open Rheumatology entitled, “Tough choices: Exploring medication decision-making during pregnancy and lactation among women with inflammatory arthritis.” Talabi is Assistant Professor of Medicine, Associate Program Director, UPMC Rheumatology Fellowship, and a medical advisor to CreakyJoints. She explains why many women endure inflammatory arthritis symptoms instead of using disease-modifying antirheumatic drugs during pregnancy and after pregnancy, some of the risks associated with discontinuing arthritis treatment during this time, and how rheumatologists, pediatricians, and obstetricians can reassure the patient that they can safely treat their arthritis and breastfeed.
Rheumatology Network: Hi, Dr Talabi, thank you for joining me today.
Mehret Birru Talabi, MD, PhD: Of course, it's such a pleasure to be with you.
RN: To begin, why do you believe many women indoor inflammatory arthritis symptoms instead of using disease modifying antirheumatic drugs during pregnancy?
MT: I think it's a great question and it's a multifactorial issue. I think it's very understandable that people have a lot of fear about the safety of their medications. Sometimes it's well-founded medications, such as methotrexate, mycophenolate, are abortive fashions, so that fear would be founded, right. But there are a lot of medications that are compatible with pregnancy. And I think that's the question: why don't people trust medications that we consider to be safe and are safe? And I think part of it is that we, as rheumatologists tell patients, you've got to get your labs checked regularly so we make sure there's no organ damage from your medications. You've got to get your eyes checked. We're looking for the potential for blindness with some of these medications. And I think, obviously, people are going to worry about the safety of their medications with respect to the health of a developing fetus. Honestly, I think thalidomide had a profound impact on how we conceptualize medication use during pregnancy. So, thalidomide, anti-nausea medication that was widely prescribed to pregnant women in the 1950s and 1960s, caused characteristic deformities. And I think it really ushered in this concern about medication use in pregnancy where not just patients but even clinicians are worried about prescribing medications during pregnancy. So, I think we're in a defensive crouch when we as rheumatologists advise people about the safety of their medications. People know that thalidomide story and are worried about the potential risk, and it's created a culture part where we, I think, prefer to treat people's arthritis as minimally as possible with as few medications as possible for fetal safety.
RN: Why do women receive conflicting medical advice from their providers?
MT: Again, that's a multifactorial issue, and our patients are getting advice from multiple clinicians, different clinicians from different specialties, who may have different knowledge or understanding about medications, safety during pregnancy, and lactation. Some clinicians may not be aware of the latest recommendations, the Maternal Fetal Medicine, doctors may be reading different literature and have different recommendations than the rheumatologists. We found that to be the case as well. And so, what can result is that there's a lot of confusion on the part of clinicians and that gets conveyed to the patients. And then what that does is it undermines people's confidence in their clinicians recommendations about medication safety during pregnancy and lactation.
RN: What are some of the dangers of discontinuing arthritis treatment during and after pregnancy?
MT: I don't want us to call it danger because I think there is already so much fear and anxiety about using medications in the context of pregnancy and lactation. I don't want us to unintentionally feed into that in the opposite direction. But that being said, there are risks associated with undertreating arthritis. Undertreated inflammatory arthritis is associated with preterm birth in arthritis patients, low birth weight, subfertility, even in rheumatoid arthritis, and importantly arthritis flares during pregnancy. The post-partum phase really affects patients’ physical functioning, their quality of life, their ability to even care for a newborn.
RN: Can you tell me a bit about the study design?\
MT: Sure. So we conducted a web based survey that we sent out to patient members of ArthritisPower, which is a patient-powered research registry and CreakyJoints, which is an online community of patients with arthritis. And our inclusion criteria included patients ages 18 to 50 years old who were diagnosed with arthritis, and we were specifically interested in the inflammatory arthritis; rheumatoid arthritis, juvenile idiopathic arthritis, spondyloarthritis, lupus associated arthritis. Close to 300 women met those eligibility criteria. And then in this particular analysis, we focused on understanding medication decision-making during pregnancy and lactation. An additional criterion was that survey respondents needed to have experienced a pregnancy after their arthritis diagnosis and about 66 met that additional criteria. The survey was large and it asked a broad range of experiences related to reproductive health and reproduction. And the survey-based questions that we focused on in this analysis, again, were related to medication decision making and people's experiences with their clinicians. In the context of, you know, medication advice and medication prescription, we also encouraged participants to fill out free text responses. And that allowed us to conduct a qualitative analysis using a productive fanatic approach in order to evaluate women's experiences as written in free text.
RN: What were the key findings of this study?
MT: Well, what we found is that patients really worry about the safety of their medications during pregnancy and lactation. About 40% of respondents didn't think any medication was actually safe in the context of pregnancy and lactation. We also saw that from patients’ perspectives, their clinicians were offering variable advice about the safety of their medications during pregnancy- that's from non-steroidal anti-inflammatory drugs to biologic medications. Interestingly, we found that the counseling has actually become more variable and inconsistent across clinicians over time. And we have some thoughts as to why that is. I think the old way of counseling patients was just not to get pregnant. If you've got, you know, inflammatory arthritis, try not to get pregnant (or for rheumatoid arthritis). RA patients used to be told, well, pregnancy is going to make your rheumatoid arthritis get better so you can go off of all your medications. But really, those are a lot more nuanced. Now, new recommendations have come out from the American College of Rheumatology (ACR). They published a reproductive guideline about a year ago, that has not been available for that long. There was exceptional guidance from the European League Against Rheumatism (EULAR). Prior to that, I think a lot of clinicians in the US were not really aware of those.
We have other resources that have been developed. Our co-author developed a wonderful resource called HOP-STEP program for managing lupus in pregnancy. And there are a lot of resources now and a lot of information. So, people are accessing information from different sites and different sources now, and some people may not even be aware of these resources. And so that's where you can kind of get that differential counseling. So long story short, that was an important finding of this study that over time as these resources are being developed that that are being developed to help clinicians. In fact, it's leading to some inconsistency because not all clinicians may have access to the same information. And so, they're telling patients information that another clinician may not know about, and that inconsistency undermines patient's confidence in medication safety, if that makes it that makes sense.
RN: It does. Were you surprised by the results of the study?
MT: I think I was I was surprised by several things. First, what was kind of shocking to me is that 30% of the woman were prescribed methotrexate in this sample. And that's a tragic medication. As I mentioned earlier, it's an abortive fashioned and 30% of those women who were prescribed methotrexate became pregnant while they use that medication, 15% of the entire sample of women. So, yes, we have some woman who are stopping perfectly safe medications in the context of pregnancy and lactation, because they don't trust those medications, but then we have another subset of women who are getting pregnant, on medications where we do know that there's a strong fetal risk. And I think it's a signal more about the rate of unintended pregnancy in this population. What I suspect is that most of these people took methotrexate and they didn't realize they were pregnant. They may not have known even that methotrexate was toxic. So, I think that all just underscores the need for family planning. In rheumatology, we need to be really careful about how we prescribe medications among people of reproductive age who have childbearing potential. And it has to be a conversation that's balanced. Some medications are unsafe, some medications are safe. Not all medications are safe, an not all medications are unsafe. I think the other thing that I wasn't so much surprised by but I found to be honestly very troubling were the experiences that people had when they discontinued their medications. And I want to read a quote. There were just some very striking quotations, but I have the paper here. And I just want to read 1 to give you some context. One participant wrote that, “For the first 6 months, I flared while breastfeeding. I would have my spouse hold the baby up to my breasts to breastfeed. I was in bed for 6 months.” That's just 1 of the participants, but she discontinued all of her arthritis medications because she felt that she could not breastfeed and take medication at the same time. And, you know, you could just feel the suffering that people experienced. And that to me is just personally very troubling. I think we have a long way to go when it comes to counseling our patients.
RN: How can rheumatologist pediatricians and obstetricians reassure the patient that they can safely treat their arthritis and breastfeed?
MT: I mean, that's the question. I think that's an incredibly important question and it has to be addressed in future work. What would reassure patients, our study at least suggests that a consistent message from about medication safety from all of the involved clinicians would be helpful for patients. The inconsistency about medication safety counseling really undermines patients’ trust. So, I think that's 1 thing that clinicians can do, they can work together, they can collaborate to make sure that there is a unified message around medication safety. The patient shouldn't hear from one clinician that this medication is safe, and hear from another clinician that the medication is unsafe because what the patient will do is just stop the medication. I mean, that's ultimately what in most cases happens. I think patients need access to evidence-based resources. One that I love is the MotherToBaby resource. That's an online, phenomenal resource about medication safety in the context of pregnancy and lactation. The way that we have to frame these conversations in rheumatology is to explain that these are not neutral decisions. And you asked about risks health risks before, it's not neutral just to say, well, as a mother, I'm going to forego treating myself so that my baby is not exposed to medication so that my baby is healthy. In actuality, a healthy mother increases the chance that the baby is healthy. And those people whose diseases are active and are undertreated are more likely to have pregnancy complications. And some of the fetal risks that I talked about before (premature birth, low birth weight, early developmental problems potentially), I think that message has to get across to,
RN: Were there any strength or limitations of the study that you'd like to discuss?
MT: We had a largely white sample of women from a relatively high socioeconomic status background. And so, our findings reflect their experiences. And that's important. But I would be interested in future work that includes a more diverse subset of people. The counseling recommendations, the trust in the health care system, and trust in medication use could be different across different populations of people. And I think we need to explore those experiences a lot more particularly in the context of pregnancy and fetal outcomes.
RN: Is there anything else that you'd like our audience know, before we wrap up?
MT: Well, on behalf of the co-authors, I would want to just express appreciation for all of the patients who participated in this study. This was a lengthy study, and they were not compensated for their time. But what they did is they helped to reveal an important window into their experiences related to pregnancy and lactation that I think was really impactful to all of us on the research team and hopefully to people who read the manuscript. And hopefully this is going to help us to better meet their needs and the needs of other patients with inflammatory arthritis in the future. So, I just want to express my appreciation to them.
RN: Thank you so much for meeting with me today. This is an incredibly important topic.
MT: Thanks so much for having me. It's been such a pleasure.