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#130 - 📑 Journal Club 50

Hello Friends 👋

We have a great episode of Journal Club for you this week. Daphna and I spoke about a variety of topics, including bilirubin levels in preterm infants, the use of a vibrating mattress to help patients with NOWS, BPD outcomes, post hemorrhagic ventricular dilation and neurodevelopmental outcomes and much more. We hope you find this episode valuable, and thank you for your continued support.



The articles covered on today’s episode of the podcast can be found here 👇

Solis-Garcia G, Raghuram K, Augustine S, Ricci MF, St-Hilaire M, Louis D, Makary H, Yang J, Shah PS.J Pediatr. 2023 Aug;259:113458. doi: 10.1016/j.jpeds.2023.113458. Epub 2023 May 11.PMID: 37172811

Bloch-Salisbury E, Wilson JD, Rodriguez N, Bruch T, McKenna L, Derbin M, Glidden B, Ayturk D, Aurora S, Yanowitz T, Barton B, Vining M, Beers SR, Bogen DL.JAMA Pediatr. 2023 Jul 1;177(7):665-674. doi: 10.1001/jamapediatrics.2023.1077.PMID: 37184872 Clinical Trial.

Callahan KP, Kielt MJ, Feudtner C, Barkman D, Bamat N, Fierro J, Fiest E, DeMauro SB.J Pediatr. 2023 Aug;259:113455. doi: 10.1016/j.jpeds.2023.113455. Epub 2023 May 10.PMID: 37172804 Review.

Groulx-Boivin E, Paquette M, Khairy M, Beltempo M, Dudley R, Ferrand A, Guillot M, Bizgu V, Garfinkle J.Pediatr Res. 2023 May 13. doi: 10.1038/s41390-023-02647-6. Online ahead of print.PMID: 37179437

Laptook AR, Weydig H, Brion LP, Wyckoff MH, Arnautovic TI, Younge N, Oh W, Chowdhury D, Keszler M, Das A; National Institute of Child Health and Human Development Neonatal Research Network.J Pediatr. 2023 Aug;259:113457. doi: 10.1016/j.jpeds.2023.113457. Epub 2023 May 11.PMID: 37172814

Wong JQH, Charles JS, Mok HT, Tan TSZ, Amin Z, Ng YPM.Arch Dis Child Fetal Neonatal Ed. 2023 May 17:fetalneonatal-2023-325566. doi: 10.1136/archdischild-2023-325566. Online ahead of print.PMID: 37197908 ----

Find some of our notes here 👇

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The transcript of today's episode can be found below 👇

Ben 0:54

Welcome. Hello, everybody. Welcome back to the incubator podcast, it is Sunday. It is Journal Club week, Daphna. How are you?

Daphna 1:06

I'm excited to do journal club, we've had some interesting papers. And you know, it's been a, we've had a tough month in the unit. It's nice to just disconnect sometimes and just dive into the data.

Ben 1:22

Agreed. We've had one of these months where you see your unit turning into a sub specific sub specialty service. So like, for example, in our case, it's been like a lot of genetic cases. And, and this happens all the time, right? Sometimes you have like, ebbs and flows for either a series of cardiac babies, or you have a series of Gi situations. And why does that happen? I don't know. It's very interesting. I remember this paper when I was in residency that came out of Japan, that looked at the incidence of Kawasaki, with seasonal changes. And, and to me, it was a fascinating idea of just trying to try to make sense a little bit of the spikes and see if there was anything. So I mean, I don't know, is there something to that. And the problem with genetics, babies, as we have in our unit this month, is that these are difficult situations for everyone. These are not easily fixed. And so just that's problem. But anyway, yeah. Looking forward to Joseph, I don't know why we went all doom and gloom, like and

Daphna 2:24

the point was to say, if you're feeling like not reading articles one day, sometimes it can be quite refreshing to, to read the articles.

Ben 2:34

That's true. That is true. Do we have any announcements we have a new episode of the French Podcast coming out today as well. We're very excited about that. And tomorrow, there will be the webinars that we've been talking about. People have been asking I think a lot of us who are what we call a bit tech savvy are, easily get around the website, is it to get around the podcast platforms. But there's a there's a we were told that there's definitely to walk people through exactly how to access the podcast, and maybe talk a little bit about some of the other things we're working on. So we're going to do a little information webinar tomorrow. And on June 12. The the information is on our website. It's on the homepage, and we're posting it on social media. I'm also going to try to stream it on social media as well. So so that will make it easy for everybody. Yeah, I

Daphna 3:23

guess if people are listening, they already got there. But if you're part of one of those divisions, who's like, we, you know, podcasts or nursing or we can't get into this new tech, and maybe this webinars for those people. Absolutely.

Ben 3:37

Absolutely. I don't have anything else to say. Okay. All right. I guess I'm pretty custom. I get to go first days. That's right. So yeah, that's the one I want to start. A start with my second paper as that I was a bit a bit of a delay there. There was this paper out of Canada that I found in the Journal of Pediatrics, called hyperbilirubinemia among infant born preterm peak levels and association with neurodevelopmental outcomes. First authors Gonzalo, Solis, Garcia and colleagues. And yeah, the title really caught my eye. It's a very interesting paper, the background goes over some of the things that we're probably familiar with that unconjugated bilirubin can cross the blood brain barrier, and really lead to this entity that we now know as bind right deliver been induced neurological dysfunction. The risk of bilirubin induced neurotoxicity is higher in preterm infant than in term infants. And we know that because of the status of the blood brain barrier in preterm infants and there are some studies that suggest an association between higher low levels of bilirubin and adverse neurodevelopmental outcome, whereas some other studies have refuted this association after adjusting for some potential co founders. But it is assumed that peak bilirubin values really increase with increasing gestational age. But when it comes to preterm infants, there's really no normative data that's available. We're really not sure what we're doing basically. Right. I mean, as you all know, the phototherapy guidelines published by the AAP don't really apply to like a 26 weaker, and then you you're reliant on either very small studies or consensus recommendations. I mean, I like the Stanford premier tool that that's available. But bottom line is we don't really have good good evidence. Most studies linking bilirubin levels to Northern metal outcomes have not really stratified cohorts, despite the general assumption that in guidelines, as gestational age goes down, your level should be your your threshold should be lower. So the aim of that study that's coming to us out of Canada, if I mentioned that is to number one describe the distribution of pic of peak bilirubin levels in preterm neonates less than 29 weeks in the first 14 days of age stratifying that by both gestational age and birth weight categories. The second aim of the study is to analyze the association between different gestational age specific quartiles of peak bilirubin and neurodevelopmental outcomes in preterm neonates that are born before 29 weeks of gestation. So let's talk a little bit about the study design. It's a population based retrospective cohort study from 33 centers that are participating in the CNN, the Canadian neonatal network, I actually got to meet one of the founders of this, Michael narvi, introduced me to one of the founders of the Canadian unit that work at PS that was kind of a cool moment. And, and this involved also another network in Canada called the Canadian neonatal follow up network, the CN Fu and the inclusion criteria were preterm neonates that were born between 22 and 28 and 28 weeks and six days of gestation that were admitted to any of the NICUs that participates in the network between January 2010 and December 2018. They excluded neonates who died before seven days of age who had major congenital anomalies and for whom any data on their bilirubin levels were not available. Now, the primary exposure was the peak total serum bilirubin level recorded in the patient's chart during the first 14 days of age and the age in days at which this value was reached. Right. So they just looked at when When did you peak right? Follow up assessment occurred at 18 to 30 months of age in the in the neurodevelopmental clinic participating in the follow up network for the Canadian unit LED work. The assessment included neurological examinations, standardized history, and there was a Bailey that was administered that included cognitive motor and language scores. Now there's, there was some important changes that I think needs to be mentioned, especially since the author do bring them up in the methodology regarding the number of centers that are participating, so between 2010 and in 2012, all neonatal follow up clinics participated in the data collections, but since 2013, only 12 out of 26 clinic have continued the data entry so and the follow up rates were of above above 60% for eligible children. So there's there's a bit of a shift that happens in their follow up rate as they are as this study period is ongoing. The primary outcome was significant neurodevelopmental impairment, which was defined as any one or more of the following. So you either diagnosis of cerebral palsy, a Bailey three or Bailey four score of less than 70 in any of the three scales, deafness or bilateral visual impairment. And they also evaluated the individual components of each of these severe mental impairment metrics. Let me pull up the paper questions so far that

Daphna 9:13

you know, and that makes sense. Okay.

Ben 9:17

I wanted to check one more thing that you want. The last clarification I will make is that the recordings that we're measuring for these infants, whether it's the peak bilirubin level is independent of whether or not they received phototherapy. Right, so they didn't try to parse out babies who did or did not just your peak bilirubin level. Okay, so between January 2010, and when December 2018, there were a total of 15,000 preterm infants with their gestational age between 22 and 28 and six that were admitted to participating center in the network, and of those 12,554 met inclusion criteria. So pretty impressive group of subjects Now, the they had a significant drop off in the number of babies who were included versus the ones who actually, were there at follow up. And so they lost a follow up 5916 children. And that's obviously a large number. About 1000 of them were lost due to death before follow up assessment. That's very unfortunate. But 4846 of them were not they didn't have the follow up data. And I think we're going to talk a little bit about the characteristics, but I think this goes back to show how difficult it is to do neurology, mental follow up. Now, characteristic of the study sample were different between the infants who saw right so looking at these infants who were there at follow up or who were lost a follow up? What were some of the difference. Now, what they found was that chorioamnionitis was less common in the group that showed up at follow up or that they were able to follow up with also small for gestational age, infants were more common in the follow up group. There were small differences in maternal age, the rates of antenatal of administration of antenatal steroids, there was changes also in the gestational age birth weight between the two groups. So if you're curious a little bit about this, and I think that's an important piece of data, especially when the when, when, when you're not the neonatal research network that has like 96%, follow up. Right, right. You are some of these some of these European countries with with good socialized medicine, but look at table three, the maternal age was a bit different, like I don't know, 31, but it's not impressive. 31 years versus 30 years. The degree of chorioamnionitis was like 23% versus 37%. In the kids who did not follow up. So that's, that's, that's a problem. Obviously. The gestational age in weeks was different, but relatively similar 26.3 weeks versus 26.5 weeks. And again, when you have large numbers, any like two days difference in the gestational age is going to be significant. So when you say, oh, there was a difference, you may assume that I'm saying, Oh, the kids who follow followed up for like 23 weeks and the one who did not work 32. Now no, they were pretty close. birth weight, also different, but it was like 930 grams versus 981 grams. And then the rates of small for gestational age that was that was quite different 8% versus 6%. In the babies that did not follow up. Okay, enough of the baseline characteristics. Let's talk about the data that they had. So the median gestational age of the cohort was 26 weeks, and the median birth weight was 920 grams. The median peak bilirubin level increased with increasing gestational age and birth weight, that trend was significant. And the peak bilirubin level was reported at a median at a median of five days. So when we say that the curve is a little bit shifted for preterm infants, and that while a full term infant may peak around 48 hours of life, and that preterm infants may be a bit later, it is corroborated by by this dataset that shows how you find the p value level at around five days. Now, among survivors who received follow up, severe neurodevelopmental impairment was identified in 16.8%. In multivariable analysis adjusted odds ratio showed higher odds in the highest quartile of peak bilirubin group compared with the lowest quartile of bilirubin for severe neurodevelopmental impairment and the need for hearing aids slash cochlear implant. So what's interesting, is that right, there was no other I'm going to finish it and I want to go over something no other statistically significant differences were found after adjusting for confounders. So basically, what they found was that there were significantly more severe Norther mental impairment in the babies that had an who whose bilirubin was in the 76 percentile or higher, right. And they also found that this was also associated with hearing aids and cochlear implant. And that was in the last in the top two quartiles. So what do we mean by that? Right? I'm going to give you some numbers, just because I think it's interesting. But I'm going to give you based on gestational age in weeks. Okay. So from for the 22 weekers. the 75th percentile that they identified was a belly of 8.1. For the 23 weekers. It was 8.3 24 weekers. It was 8.7 25 acres was like 9.3 26 acres. It was 9.4 27 acres. It's 10.1 and 22 acres. It's 10.7. Which, I mean, I don't think we let our babies go to 8.1 or 22 weeks, but these are not numbers that are hard to reach.

Daphna 14:46

Right. You could definitely get there. Yeah, yeah.

Ben 14:50

If you looked at it from the birth weight standpoint, less than 500 grams, the 75th percentile is 8.2 500 to 750 years. 8.8 750 to 1000, about 9.5 1000 to 1250 is about 10.6 to 50 to 1500, about 11. And 1500 grams or more is 12.3. So, that table is kind of cool. I save that. And remember, these numbers may actually be babies who these actually maybe babies who received for therapy right, so, so this, this is just their peak bilirubin level. So I think this was a very interesting paper the conclusion is that the authors feel like they provide normative total peak bilirubin distributions and a large national cohort of preterm infants born before 29 weeks of gestation, and the report shows that pictoral bilirubin levels in extremely preterm neonates are higher as gestational age and birth weight increase, and that the peak bilirubin values in the highest gestational age specific quartile were associated with a higher odds of Northern mental impairment and hearing impairment in neonates born before 29 weeks of gestation. Interesting, interesting paper.

Daphna 15:59

Yeah. Well, and and part of it is what we do clinically, right to prevent those peaks, right. You're we're more aggressive in the lower gestational ages, but it's useful.

Ben 16:13

I was Do you have any questions? I was thinking you were gonna have a question. So I left that. So the question you may ask people may ask, you say, well, you're just looking at a peek below a level, you're correlating that with some follow up at like 18 to 30 months, like, some kids get sick. There's so many other factors. That was that was addressed. And I

Daphna 16:31

know, you could say that about any of the things we research, right? Absolutely.

Ben 16:37

They did multivariable logistic regression analysis, and that included birthweight sex, small for gestational age, and also they use the snap score and maternal education as well. So, so that was that was obviously it goes without saying that if that was had been done, the data would not really be valuable, but it's in there. And there's more information if you want in the in the statistical analysis section of the paper. But yeah, interesting paper.

Daphna 17:04

Sounds good. Okay, are you ready?

Ben 17:07

No, you should be ready. You're

Daphna 17:09

going I'm ready. Yeah,

Ben 17:10

I'm ready. Listen,

Daphna 17:11

are you ready? Yeah. Okay, so this paper was entitled efficacy of a vibrating crib mattress to reduce pharmacologic treatment in opioid exposed newborns, a randomized clinical trial and lead author Elizabeth Bloch, Salisbury. And this is coming to us from the University of Pittsburgh at the University of Massachusetts in JAMA Pediatrics. So they wanted to see what was the efficacy of a vibrating crib mattress for treating newborns who had had opiate exposures and primarily methadone and buprenorphine. So it was a prospective dual site randomized clinical, clinical parallel group, modified, so analyzed for the conditions received with an intention to treat analysis, evaluating the therapy, the therapeutic efficacy of these vibrating crib mattresses for reducing pharmacologic treatment in these term newborns with opioid exposure. So basically, they randomized babies to routine treatment versus the use of these vibrating mattresses. Eligible infants where newborns egg greater than or equal to 37 weeks gestation, with confirmed meconium and or urine tox report AND, and OR documented in utero opioid exposure, methadone, buprenorphine, oxycodone, and heroin and receiving neonatal care at these two units. The exclusion criteria included clinically significant congenital anomalies such as hydrocephalus, intracranial hemorrhage greater than grade two seizures not related to drug withdrawal anemia, with hemoglobin less than eight hypoxic hypoxic ischemic encephalopathy, respiratory failure requiring invasive and military support, or receiving treatment for bacterial or viral conditions. So basically, these infants who were assigned to the vibrating mattress had the root normal Crib Mattress replaced with this study mattress, and they give some details about the vibratory frequencies, if that is interest of interest to you, and then the mattress is cycled on and off around the clock, even if an infant was not in the crib. So per their standard of care, all infants received quote unquote non pharmacologic strategies and were assessed clinically for signs and symptoms of withdrawal using the modified Finnegan and infants who develop symptoms severity that met the clinical criteria for treatment based on the quote unquote clinical protocol which many of us use three consecutive defend against scores greater than or equal to eight, or two consecutive scores greater than or equal to 12 determined by the team were transferred then to the NICU for treatment. So the primary primary outcome analyzed for the article were the need for pharmacotherapy and hospital duration. And the primary endpoints for pharmacotherapy were administration of morphine treatment, they call that a n t, which was the first line medication at both sites. And and the cumulative morphine dose, they call that C M D. And then the primary endpoint for hospital duration was the length of stay and length of morphine treatment. So they do talk about like we discussed in a previous paper that sometimes the length of stay is different and not necessarily dependent on receiving medications, right? There's some social psychosocial needs that that may change the length of stay. So that's something that I'll discuss, but we'll get into the baseline characteristics they had 208 Mother infant diets, enrolled 104 infants were randomized to routine care and 104 to the vibrating mattress intervention. analysis were performed on 181 infants who completed hospitalization at those study sites, they had a mean gestational age of 39 weeks, they had a mean birth weight of 3076 grams 44.8% were female. I'm sorry, 55.2 were female 44.8 were male. And otherwise, the demographic variables were similar except of note in the in the cohort, there are more infants exposed to opioids, illicit or prescribed, in sorry, not specified for medication assisted therapy in the SBS in the vibrating mattress group, then in the routine care group,

Ben 22:00

should have come to Miami more often.

Daphna 22:03

That's right. So the primary outcome of the 181 analyzed infants 66.9%, were discharged without medication, and 33.1% are transferred to the NICU for morphine treatment. But of the of the babies 51.7 of the babies transferred to the morphine, to the NICU for morphine treatment, or the usual care group versus 48.3% in the vibrating mattress group. So it wasn't statistically significant, but the treatment rate was 5% higher in the usual care group than in the vibrating mattress group. Day of life, the infant started treatment was also not statistically significant between groups and among the untreated infants. There was no significant difference in day of life which the infants were discharged from the newborn unit. What else did I want to tell you? They other interesting point they had, they looked at the infants who were ready for hospital discharge in the vibrating mattress group. But then within 24 hours of shutting off the mattress, six infants 10% then met the criteria for pharmacotherapy and were transferred to the NICU for treat. So then they wanted to look at the groups a little bit more closely adjusted analysis of the administration of morphine treatment with a dose response variables revealed that those babies who had more vibrating mattress duration, hours per day was associated with a reduction in morphine treatment. So this corresponds to a 50% reduction in work in treatment for infants receiving vibratory mattress on average, at least six hours per day in that newborn unit. They also looked at the amount of time infants were held by caregivers in the newborn unit. And this was also associated with a reduced morphine treatment and odds ratio of point nine hours per day. And then a post hoc analysis showed that the effects of the vibratory mattress duration and caregiver hold time on morphine treatment were additive when considered jointly in these regression models. So more time spent vibrating and more time and caregiver arms, less morphine treatment, and when you had more of both, you had also less more treatment. And they looked at the group of 60 infants who were transferred to the NICU and received morphine treatment, they didn't see a significant difference in cumulative morphine dose or lay With a treatment between the two, two conditions However, using Kaplan Meier plots, it was noted that among infants who completed treatment within three weeks, so babies that they considered, quote unquote responders, the length of treatment differed between infants who received the vibratory mattress therapies versus routine care. So 58.6 of infants who received vibratory treatments finished treatment within three weeks, compared with only 48% of infants who received usual care with a hazard ratio of 1.96. This was a 26% decrease in length of treatment, or 3.18 fewer treatment days than in infants who received usual care and adjusted analysis of this responder group. Again, babies who finished treatment within three weeks also revealed that the mean, cumulative morphine dose was 1.76 milligrams per kilogram less for an infant's who received the vibratory mattress versus usual care. For babies who needed more than 21 days, quote unquote, non responders, there was no significant difference between conditions. They also looked at infants with prenatal methadone exposure versus other kinds of exposures, in particular buprenorphine. And so they found that babies who had prenatal methadone exposure had higher rates of morphine treatment, and responders. So those kids who needed less than three weeks with prenatal methadone exposure at a higher cumulative morphine dose and longer length of treatment, compared to those infants of mothers receiving buprenorphine therapy. So yeah, so I thought that was an interesting data point just in about the medications that we're using during pregnancy. I was hoping to see a bigger, bigger impact for the vibratory mattress, but I definitely think there's a there's a trend Trend that potentially if they had had larger sample size, we would have seen, you know, this vibratory mattress. That's something we were using for neonatal abstinence syndrome, like decades ago, like kind of fell out of favor. Yeah. Kind of fell out of favor, and then people are starting to study it again. So

Ben 27:27

yeah, I mean, I think we did review on the podcast, also the the New England Journal article on buprenorphine versus methadone for opioid use, and, and it had like better outcomes for neonates, if I remember correctly. But it is interesting how this is really oppressive. Unfortunately, it's such a prevalent issue, especially in the US that more and more we're seeing that all these I mean, we talked about sleep console the last time and so all these interventions, and I'm I'm hopeful that maybe we'll get to a point where we can reduce the opioid in taking these infants to really a negligible amount by just having, I mean, I'm wondering if eventually they'll end up in like, you know, like some of these have you heard of the sensory pods where you basically like, where people can go and like, everything is black. And it's it's, it's Yeah, so maybe somebody will design that in the end? I don't know.

Daphna 28:24

So it's funny that you say that because our friend, Dr. Nora Coleman, who studies unit design, is actually looking to speak with neonatal units who have separate pods for babies who are undergoing treatment for now's or NES, whatever your hospital is using. So if you're one of those units, you can let me know and I'll I'll connect you with her. So they are, they are studying specific unit design for these groups of babies.

Ben 28:56

Very cool. I mean, Nora was at Delphi this year, she gave a great talk. And I'm actually, actually I may have received her edited video today. So we're gonna start releasing those videos next week. It's going to be exciting. We should have mentioned that at the opening of the show. You should have mentioned that anyway. But things are coming. So that's quite cool. This episode is proudly sponsored by rocket meat Johnson. Recommend Johnson is dedicated to the research and development of nutrition products that help support baby development at every stage, including an extensive and female portfolio for premature and low birth weight infants. Learn more at HCP dot meet All right, buddy. Very nice paper. I'm next. So I'm going to go into some BPD stuff. I found this article I think in the Journal of Pediatrics again. And this is a paper called ranking future outcomes most important to parents of children with bronchopulmonary dysplasia. first author is Catherine Pres. Callahan. And there's a bunch of other authors, there are friends Matthew kilt who is on there. And last author is none other than Sarah dimauro which I got to meet. Nick Bama is on there as well. I got to meet Sarah PS. And that was kind of Starstruck, but I was like, Hey, I review your papers. They're really good. Anyway, so anyway, it's a great team of

Daphna 30:24

weather nerdy thing to say to people

Ben 30:26

I know that was I realized that as it came out, that was like, because you know, how I how I am very, like, you know, I do a lot of work with tracheostomy, the timing of tracheostomy, right? And when to trach. There's not much data on it. So there's like one or two papers that even bring it up. And she's one of them. So I use her paper all the time. So anyway, okay, so the still very nerdy, it's not making my case any better. The background is interesting, mentions how information about potential future outcome shapes how parents envision their child's future influencing their medical decisions, and that BPD affects not only respiratory outcome, but also other medical and neurodevelopmental outcomes ranging from vision impairment to difficulty with activities of daily living, to poor school performance. Now, there's growing awareness that the outcomes that physicians that physicians deem important are often not the information parents in the neonatal intensive care unit most value, and what we and what we term as, quote unquote, parent important outcomes now. So outcomes really may mean something different. Whether you are a parent and a physician in the background really tease thesis, that concept apart. I'm not going to spend too much time going over that. But the bottom line is that this matters considerably when it comes to how we do research and which outcomes do we measure. And I guess the sentence could have gone in which outcome we prioritize, right? I mean, that's something that we spoke about with Jen canvasser where we should prioritize outcomes for quality of life defined by what the patients and their families deem as important. So the objective of the paper is really to ask parents, which potential future outcomes of infants with BPD are most important to them. And in context, the word outcome was used to indicate like a broad domain of concern about the future. And we'll talk a little bit about that, obviously, which may correspond to several possible concrete outcome measures. So this was a cross sectional assessment of parents priorities regarding the importance of 20 different potential future outcomes that are associated with BPD. The way the study was done is that parents were recruited from the NICU follow up clinics have two tertiary hospitals, none others in chop, and Nationwide Children's. So really, really, very reputable institutions. They curated a list of medium to long term outcomes associated with BPD, defined as outcomes occurring months to years after NICU discharge, and then we find it with a pan with panels of parents and clinicians, which is a little bit something that we had discussed when we discussed Shauvik Mitras. Paper on on counseling. Now, to create the list, the the first author systematically reviewed, two sources, which were the most cited BP research studies and neurodevelopmental impairment assessment measures cited in BP research. So the first author, by the way, throughout the methods, you understand how that first author earned her spot as first author. She did a lot of all the previous studies. Yeah, I mean, I mean, obviously, everybody contributed but I'm saying the dimension the work, it's like, oh my god, this is like a lot of work. And it keeps talking about her as like one investigator but it's it's then that then the first author led two panel meetings, the first with four prior NICU parents and the second with six interdisciplinary clinician stakeholders, including neonatologist, clinical trials ethicist, pediatric pulmonologist and psychologist, the panel systematically reviewed, refined, canceled, consolidated and added to the outcome list and using a simple cognitive interviewing prompts reviewed the final list to ensure each outcome was stated in a way that was comprehensible. Interestingly enough, the excluded death as a possible outcome they really didn't want to. They were I mean, yeah, so they do that. So I'm going to tell you exactly what they say. I think to me, it makes a lot of sense. They said though, death competes with other outcomes of interest. All other outcomes are predicated upon a child's survival, making death inherently non equivalent. So as I'm going to go through the full list of outcome, you're like, Well, what about death? That's the reason why it's not on their parents, biological, adoptive and foster parents were eligible if they spoke English had a child who had been hospitalized in the NICU for prematurity and diagnosed with BPD defined as requiring oxygen or other respiratory support at 36 weeks postmenstrual age and then the basically as the parents to rank The importance of each of these outcomes on a scale of zero to 100. And I'm just going to give you some of them because there's not that many. So the outcome questions where will my child need technology to help with breathing? For example, oxygen tracheostomy. So, so far so, so far, ie, when my child have trouble breathing? Will my like, for example, wheezing? Will my child need to be hospitalized frequently? Another outcome question was, will my child need a nurse or other extra people at home to help care for him slasher? Another question, will my child be safe at home given his or her medical needs? Another question was, will my child have trouble seeing? When will my child have trouble hearing? Will my child have trouble eating and growing? Will my child be more vulnerable to other problems because of having lung disease? Right? And that is so interesting. Well, yeah, we'll talk about that. That came actually from the parent panel. So it's interesting to see what the parents know another. The other question was, will my child be safe at home, given her medical needs was also from the parent panel as well? Will my child have trouble communicating? Will my child have trouble performing everyday activities? Will my child have trouble making friends? That was an interesting one, will my child trouble have trouble learning in school? Will my child have trouble with behavior? Will my child have trouble moving and getting around? Will my child have trouble with pain? Another one that's interesting, obviously is will my child be happy? When my family have trouble with everyday activities as a result of caring for my child, when my child experienced financial trouble, as well, my family experienced financial trouble as a result of caring for my child. And then the last one was, will my family experience family or personal conflict as a result of caring for my child? These are very deep questions. And so I'm taking the time to read all of them, because now it gets really interesting to see what what what was ranked. So 105 parents of 92 children completed this DCE. Right, that's what they call the discrete choice experiment questionnaire. In most cases, only one parents attended the appointment, and it was available for enrollment and most participating parents were mothers 74% of the time, and self reported as either white and 54%, or black and 33%. Most children of the participant were either less than a year of age 440 4%, or between one to two years of age 24%. Let's go into some of the rankings. Parents ranked will my child be more vulnerable to other problems because of having lung disease, which was an outcome added during the parent panel, as we mentioned, as most important trouble with breathing and needing respiratory technology ranked second, and third, respectively, which I think is very interesting. Because that is what will be in the consequence of my baby having BPD for my baby's health in the future. And that's a very, I think, a very elaborate and complex question that I would not expect the rank number one, I think the needing technology needing a tracheostomy, for example, in my mind would have probably been first but yeah, so that was number one, needing respiratory technology was three and two was trouble with breathing. What were the lowest ranked outcomes? So the lowest ranked outcomes? Where will my child have trouble making friends? I think that was interesting, because I think you can I mean, maybe it shows a little bit of the prioritization, where it's like, it's maybe not on the table when the baby is sick? Will my family experienced family or personal conflict as a result of caring for my child? And will my child have trouble with behavior? So these were the lowest ranking outcome? The low ranking of outcomes associated with development aligns with prior work that was demonstrating that parents in the NICU are more accepting of disability than neonatologist, right? I mean, we, when when will my child have trouble with behavior? Like mean, this is right, this is no development. This is behavioral development. And and I think parents, then they're speculating the others that are going to have a higher tolerance for that. Now, in terms of relative importance, parents rated well, my child may be more vulnerable to other problems because of having lung disease as being twice as important as well, my child have trouble communicating, and other and over 10 times as important as well, my child have trouble making friends. So figure two in the paper we're going to probably post on social media is very interesting. I don't know if if you have it in front of you, like magnitude. Yeah, so it's very interesting to see how they rank and the magnitude. A few more interesting results. Parents of children who were a year or older ranked outcomes related to development such as trouble learning in school, higher and ranked being safe at home lower than parents of younger children. And I think it shows how the prioritization of of outcomes really changes as the baby obviously makes it through certain milestones. Parents will report it food or enter a diaper in Security Police written reports on Family Centered Outcomes such as family or personal conflicts. And, and that's, that's, to me, that's just so sad. Because it really shows how the needs of the families really become really essential as food insecurity becomes a problem. And and and that's devastating. I mean, I think, yeah, especially I mean, again, in a, in a well developed country like the United States that these things should not happen.

Individual parents rated the outcomes differently, resulting in the broad distribution of many of the outcomes, some outcomes were marked by greater variation and their importance across the groups. And this did not really clearly correlate with the overall importance of the outcome. So for example, when will my child have trouble eating and growing was of high importance and has a large distribution? Well, will my family experience family or personal conflict as a result of caring for my child was assigned low endpoints and had a relatively small distribution, yet some parents ranked it much higher in point with so so that's, that's some of the interesting thing. Figure four to that end is actually interesting, where you can see the variability in some of the individual level of variation across some of these outcomes, and how they will rank. So that was interesting. The discussion is a fascinating one. I'm, I'm way over my time, I'm so sorry. But the first sentence of the discussion to me was very impactful because it said in our quote, as clinicians who take care of ill neonates and researchers who study BPD, we have a duty to provide parents with the information about the future that is most important for their decision making and preparation. I mean, that's a slide right. I mean, if you're ever presenting on this topic, this is exactly correct. This is so well said. Now, the top ranked outcome, which is vulnerability to other problem is also consistent with this mindset, suggesting that parents are worried about both threats they know and those that may arise in the future. This fear is not surprising, since all parents have clinically ill neonates likely experience repeated trauma and loss of control the feeling, and I quote, of waiting for the other shoe to drop, right. So it's like, so I think that's that's that was very interesting. I'm going to stop here, the conclusion states that the authors feel like they've established parents relative ranking of importance of potential future outcomes associated with BPD. And that they hope this will direct further study to create concrete outcome measures that better reflect parents perspective. Furthermore, the observed heterogeneity among parents about what matters most to them will guide clinicians to be open about differing perspectives when providing prognostic information, or anticipatory guidance. So I want to commend the whole group. But Katherine press Callahan did a phenomenal job as the first author, this is a very, very interesting study. And the reason I think it's such a compelling study is because I think the counseling of parents with BPD is something that is always very tricky. We're not exactly sure. Oh, like, today's a great day, because the fire to wind down by 5%, for many parents is like, I don't give a toss about the fight. Like that's really right. But for some others, and so that makes always these interactions very complicated. And we're not exactly sure what matters to them. And I always tell the story of when I think when I was when I was a fellow when I told the family that they'd be with BPD, we'll have some like, and like, oh, you know, it was not severe. So I thought, you know, the, you may not see something significant, like maybe some, some reactive airway disease type type of situation. But when it comes to being a competitive athlete, that may be an issue with a BB with BPD, right? And I said that as a reassuring thing, like, oh, like, okay, so you want and that was what these parents were hoping their kids was going to become a competitive athlete. So that was devastating. And then, as I should I dropped the ball completely, because it's not convenient. So what I'm saying is that counseling for patients with BPD is tricky. And having this information to understand a little bit, what are some of the priorities is, is both valuable? And interesting.

Daphna 44:04

Yeah, I think it's important in directing research questions, but like you said, so much everyday at the bedside in counseling. And I think some people struggle with this type of data and may say, like, well, I don't know what's important to the family. So the these articles are important. But I also think it's a reminder that like, we can ask parents like, what is important to you? Like, what are the outcomes that they have a question in mind, but sometimes they're afraid to, to ask. And so we had to say, you know, like, what, you know, what are what is important to your family? What are your hopes and your dreams for your baby? And then we can, then then we have a similar language about what are the risks and the benefits? So

Ben 44:50

absolutely, I mean, I'm was wondering whether I was going to print or should they lie like, I lost my notes, but I was going to print that table one with a full outcomes list and say, like, maybe I should give this to my Patience and say, hey, yeah, how would you how would you rank?

Daphna 45:03

That's a great idea. Yeah. I loved that. Yeah. Are you? What are the what are your top three concerns for your family? You know, we should

Ben 45:14

think about it in those terms from the standpoint of the authors of this paper did phenomenal work to come up with this list of question, doing both literature review and neuro other metal assessment, doing qualitative counseling, having parents panel, then use their work and give their work more meaning by using it? So anyway, you can tell I'm very excited about this because I'm from Scotland. Yeah. Anyway,

Daphna 45:36

and you've done a lot of counseling this week. Yeah. Okay, I have a paper, spontaneous resolution of post hemorrhagic ventricular dilate a dilatation in preterm newborns and neurodevelopment. Oh, you're gonna have to help me, I think the first author,

Ben 45:54

it's a hard one. Whatever.

Daphna 45:58

Oh, that was nice.

Ben 45:59

First of all, the LD x is not is silent.

Daphna 46:03

Well, it's good to know.

Ben 46:06

But I think it's good, whatever. And maybe even wrong. But yeah.

Daphna 46:11

All right. Okay. The LME exercise, I learned something new every day. Okay. This is in pediatric research coming to us from Canada. And that question is basically if you have post hemorrhagic ventricular dilatation, does resolution of the ventricular medley, you know, with without intervention, predict a better prognosis. So, I'm going to preface this with saying they used a lot of the guidelines based on the Elvis trial. If you're not familiar with Elvis trial, or the Elvis study group, that's the early versus late ventricular intervention study in post hemorrhagic ventricular dilatation. So they were really trying to answer the question does early versus late treatment benefit developmental outcomes is there a threshold in which we should be treating babies so a lot of the parameters come from that work. So the inclusion criteria was consistent with those studies they used. It was a multicenter retrospective cohort study of newborns born at less than or equal to 34 weeks gestational age, who had cranial ultrasounds with ivh, grade two, three or four using bopis criteria, and performed in the first six weeks of life. So they were reviewed, those babies were reviewed, then to find identify newborns meeting the criteria for post hemorrhagic ventricular dilatation. And they use the definition as a ventricular index greater than the 97th percentile for gestational age and an anterior horn with a greater than six millimeters. And that was, again, if you're not familiar with the Elvis trial, that was the lower thresholds to for intervention. So they identified these babies who had post hemorrhagic ventricular dilatation, and then survivors, so lots of these babies died. And we'll talk about that in a second. But of the surviving babies, they were divided into three groups Group one spontaneous resolution of p HVD, which means kind of dropping below those thresholds. Group two persistent PHV D without intervention and group three, progressive phpt receiving neurosurgical intervention. Like I said, they were considered to have spontaneous resolution when both lateral ventricles returned below those ventricular index of the 97th percentile or the anterior horn with less than six millimeters without any intervention, obviously, was classified as having bilateral when both lateral ventricles met the criteria, and unilateral went only on one lateral cross the threshold. And of note, there was no systematic protocol for the management of pH VD at those institutions during the study period. However, they say newborns were typically considered for intervention, once they crossed the threshold for severe pH VD. And they had a kind of a group, a consistent group of neurosurgeons that would make the decision together to intervene.

Ben 49:32

And like for like a reservoir or something, right? That's right. That's right.

Daphna 49:35

And they'll talk about the types of interventions. And in general, lumbar punctures were not routinely performed for the management of pH VD, which is been studied and, and there's not a lot of consistency on the recommendations for that and who's doing what to manage PGD, with lumbar punctures in terms of the neurodevelopmental outcomes on all the study centers, newborns with phpt were referred to neonatal follow up clinic regardless of gestational age of birth. They had developmental assessments at four 918 and 36 months corrected age diagnoses were made by specialized pediatricians as part of the neonatal follow up clinic on or around the 18 month old visit. epilepsy was defined as the use of anti seizure medication in 18 months. And then the gross motor function classification system was extracted from the 36 month visit if available. And they were looking for Global Developmental Delay a delay which was defined as a significant delay greater than equal to two standard deviations below the mean on standardized tests in at least two developmental domains. And then they had a primary outcome of severe neurodevelopmental impairment defined as the presence of global global developmental delay or cerebral palsy with a gross motor function classification system score three or three to five. Okay, so they had 5238 newborns born at less than or equal to 34 weeks gestation who are admitted to these two, tertiary Nikias between 2012 and 2020 176 of them are 9% developed ivh grade two or above. They had a total of 128 newborns who met the criteria for pH VD. So 128 40 of whom died prior to discharge from the NICU. And as expected, the incidence of PAH VD was lower among newborns with grade two ivh 19 out of about 300, relative to those with grade 348 out of 58, and grade 461 out of 101. These were statistically significant. The median age of death in patients with pH VD was eight days and most deaths did occur in the context in the context of PAH VD, were associated with this reorientation of care towards comfort measures for severe brain injury, nearly 80% And we talked about this in a previous study so many of these babies are, we change the type of care we're providing to comfort care. So that's important to note, you know, why, why and how are these babies dying. Other causes of death included hemorrhagic shock secondary to severe ivh, five out of 40, severe bronchopulmonary dysplasia, two out of 40 pulmonary hemorrhage, one out of 40 neck one out of 40 and quote unquote uncertain cause two out of 40 newborns who died had younger gestational age at birth, smaller birth weights, and a higher proportion of grade four ivh compared to survivors. So 39% of the cohort and 88. Sorry, of the 88 survivors, and 34, or nearly 40%, experienced spontaneous resolution of PAH VD, this was the first group,

Ben 53:10

it's actually quite reassuring of a number. For sure,

Daphna 53:13

don't you think? Yeah, that's almost half. But it's interesting. It's it's interesting because many of the deaths were about moving towards comfort care in the face of, you know, post hemorrhagic ventricular dilatation. So, you know, it's interesting which babies were redirected in which babies weren't 15 or 17% had persistent pH VD without any intervention. That's group two. And 39 infants are 44% underwent neurosurgical intervention because they progressed in almost all cases to severe Ph. D. D. Interestingly, group three, the ones who got the neurosurgical intervention had the highest mean gestational age, and I had to think about this for a while, but that's because a lot of the deaths were in the younger gestational age groups. So primary outcomes overall. I told you 39% of surviving newborns experienced spontaneous resolution of PAH VD. The rates of grade four ivh were similar across all groups. However, group one had smaller maximal ventricular measurements, so that makes sense. And smaller, maximal anterior horn width, then groups two, and three, so the babies who are most likely to have spontaneous resolution had smaller, abnormal measurements. That makes some sense. In addition, a smaller proportion of newborns in group one met the criteria for severe PAH VD 15% relative to newborns in group two 40% and group 390 5% So the babies who got intervention were more likely had to met criteria for severe post hemorrhagic ventricular dilatation newborns in group one were also less likely to have bilateral than those in groups two or 340 7% versus 93% versus 100%. In the group three in of the 19 Surviving newborns with unilateral PAH VD 95% experienced spontaneous resolution and none received neurosurgical interventions. I think that's useful. I feel like we have a lot of babies who have this unilateral ventriculomegaly That we're not sure what to do about, but 95% had spontaneous resolutions. And group one, the median time interval between diagnosis and spontaneous resolution was 14 days. I think that's also very valuable, because if it's going past that, then it you should give it a second thought. And group three, the median time between diagnosis and diagnosis of severe PAH VD with 60s. I think that's also very interesting because it gives us something some anticipate what to expect in terms of progression, and the median time between phpt diagnosis and the first neurosurgical intervention was 12 days. I thought that was very interesting. Okay, of the 39 newborns in group three, so the babies who got intervention 37 So 37 Out of the 39 across the threshold for severe PAH VD prior, prior to the first neurosurgical intervention to newborns received an intervention without crossing the severe threshold because the dilation was progressing so rapidly. Six newborns and group two, so pH VD that did not regress but no surgical intervention crosses threshold for severe phpt. But either remain close to the severe threshold or experienced ventricle, ventricular decompression below the thresholds within a few days, so never underwent intervention. So about the interventions ventricular sub Galeo shunt was performed more often than ventricular reservoir. So 21 to 39. Babies got ventricular Sebelius shunt, and nine out of 39 got ventricular reservoirs as a temporary measure temporizing measurement, the rate of conversion to ventricular parents Ventriculoperitoneal Shunt was 90%. For those babies who got the ventricular Sebelius shunts and was 78% for those babies who got the ventricular reservoir. There's some other data about shunts, but I'm going to delay that for now. Although group one had the lowest rate of severe neurodevelopmental impairment, 15% versus 18%, and group two and 66% in group three, in comparison to group three group one also have lower rates of CPE 19% versus 46%, and particularly of quadriplegic cp 8% versus 29%. And they have lower rates of CP with a low gross modal gross motor score 8% versus 31%. laughs and group one had lower rates of Global Developmental Delay 15 versus 60%. lower rates of epilepsy 4% versus 29%. And involvement. The state appoint involvement of greater than or equal to three allied health professionals at 18 months 31% versus 71%. In regression analysis, adjusting for gestational age and IV H rayed for every one millimeter increase in maximal anterior horn with above the six millimeter threshold, the odds of severe neurodevelopmental impairment increased by 19%. Not surprisingly, newborns with grade four ivh and group three had significantly higher rates of CPE than newborns with grade four ivh in group one. So I think I mean, what they were trying to answer was, if we intervene on these babies, can they have similar neurodevelopmental outcomes to the babies who resolve on their own? And I think the answer is no, but I think in terms of prognosis, and anticipatory guidance, having quick resolution spontaneously of ventriculomegaly is a good prognostic sign.

Ben 59:37

Agreed. Agreed. I have one more you can quickly go through it. What do you think? Okay. This is published in the Journal of Pediatrics, it's from the NICU neonatal Research Network. The first author is avid Lapdock. It's called antenatal steroids pro For lactic indomethacin and the risk of spontaneous intestinal perforation, I think it's a very interesting paper. The pathogenesis of SIP is really not completely understood. But there's associations that have been reported like early postnatal steroids and sip and between early postnatal steroid postnatal, in the medicine and sip. Now, the authors of the paper have previously performed a single center case control study to determine if antenatal variables are associated with sip. And what they found was that adjusted analysis indicated that a shorter interval from the last dose of bit of methadone to delivery was associated with an increased risk of sip. And in that paper, the potential interaction within the medicine given on day one could not really be determined since the site practice was uniform use of this medication. Then there was another paper by the Canadian general network that reported an association between sip and CO exposure to antenatal steroids within a week prior to delivery, and postnatal prophylactic indomethacin among infants less than 26 weeks and weighing less than 750 grams. So the question they're asking really, is to test the hypothesis that the odds of spontaneous intestinal perforation were increased with progressively shorter and shorter intervals of antenatal steroid administration prior to delivery, when combined with indomethacin, administered on a one by four extremely preterm infants. This is a retrospective cohort analysis of the registry from the NICU neonatal research network that's basically prospectively collected data from 15 centers. And what's interesting is that the inclusion criteria included babies born between 2016 and 2019. So it is a very recent cohort. And that's an important point. And these are infants with a gestational age of 22 to 28, and six weeks and the birth weight of 401 to 1000 grams. The exclusion criteria were death occurring within 12 hours of age. Without the initiation of intensive care, obviously, the presence of major malformation, chromosomal anomalies hydrops nonbacterial, congenital infections necrotizing enterocolitis. At less than 14 days of age and sip occurring after 14 days of age. We'll talk about that in a second. The primary or the expected clinical data that was collected and the receipt of indomethacin within the first 24 hours of life was recorded. The indication for which the indomethacin was given was not captured. The primary outcome was SIP occurring by day 14 afterbirth. Sip was defined as an intestinal perforation occurring in the absence event of necrotizing enterocolitis and the date of the occurrence was recorded. They limited it to 14 days since it's more difficult to distinguish sip from neck beyond two weeks, two weeks if a laparotomy is not undertaken. The secondary outcomes were death or SIP by by day 14, grade three or four ivh PDA treated either pharmacologically or closed surgically. So far, so good. You're nodding I think you're not I see you nodding. 6851 infants were included in the study. And and then these infants were then broken down by by stratified by what interventions they ended up having received. So for example, babies who had no antenatal steroids and who did not receive indomethacin that was about 324 infants, the group that had no antenatal steroids but did receive indomethacin that was 134 infants, babies with who were born after the mother received antenatal steroids but did not get into medicine with those 4600 infants, and then steroids and in the medicine that was about 1700 people. Okay, so let's talk about the result. The study included 6851 infants. These infants were subdivided into four categories depending on whether they received antenatal steroids and whether or not they received in the medicine. Let me give you this breakdown. So most of the infants actually belong to the category that received antenatal steroids and then did not receive under medicine that was 4664 infants. Then we had 1729 infants who were in the category that received antenatal steroids and received in the medicine on day one of life. We had 134 infants that received no antenatal steroids and received indomethacin. And then finally, we had 324 infants that neither received antenatal steroids nor received in the medicine. Some interesting baseline characteristics exposure to antenatal steroids with or without subsequent administration of indomethacin was associated with multiple maternal characteristic and obstetric practices that included higher attendee education lower percent Hispanic more prenatal care less antepartum hemorrhage, increased incidence of prolonged rupture of membranes, increased use of antibiotic magnesium administration prior to delivery and more delayed cord clamping. Another interesting baseline character characteristic was that exposure to indomethacin with or without the exposure to antenatal steroids was associated with a higher incidence of chorioamnionitis and infants of a younger gestational age and lower birth weight. Now, the others are making an interesting clarification, which is that central practice was strong was a strong determinant of the use of indomethacin. Right so five centers did not use indomethacin aid center used it in less than 50% of infants and six centers used it in over 50% of infants. The median age of SIP was seven days with an AQR ranging from five to eight and did not differ by exposure variable. The time from the last dose of steroids to delivery was a median of 32.5 hours, with SIP compared with 37.1 hours without sidai obviously was not statistically significant. And the last was of antenatal steroid was administered within one week of delivery in about 85% of infants exposed to steroids into medicine on day one, was used in 51.4% of infants who developed a SIP compared to 26.3% of infants who did not end up developing a spontaneous intestinal perforation that was obviously statistically significant. I think this is the the most important outcome, which is that the adjusted analyses including center in a multi level hierarchical model, which is shown in table four of the paper indicated that there is no interaction between the time of last antenatal steroid dose and postnatal administration of indomethacin for the development of spontaneous intestinal perforation, and that was shown to be not statistically significant, obviously, with a P value of 0.7. There was no association between any NDAs in between any antenatal steroid variable and sip, the adjusted odds of SIP were increased by 1.7 fold went into medicine was administered after birth. I think that's something that obviously I will be something that in my notes I did highlight, and that will be sort of one of the take home. For me. There were no interactions between indomethacin and gestational age or SGA status for the development of sip, the odds of SIP were increased in the presence of antepartum hemorrhage, maternal antibiotics prior to delivery, male sex and SGA status. The odds of SIP were reduced with each week of increasing gestational age, that's not really surprising. That's sort of something that was already known. And interestingly enough, looking at the combined outcome of death or SIP by day 14, there was no interaction between the time from the last antenatal steroid dose to delivery and indomethacin. Another interesting finding is that antenatal steroids delayed cord clamping and advancing gestational age were associated with reduced odds of death or sip. Looking at some of the ivh data and PDA data, the adjusted odds of highgrade ivh was not associated with exposure to indomethacin on day one. And then finally, the eyes of a PhD that either pharmacologically or close surgically were reduced with the exposure to indomethacin. So an interesting paper that concludes that that concludes I'm sorry that they did not find that the odds of SIP are increased by antenatal steroid in conjunction with postnatal indomethacin administered in the first 24 hours following birth. These results add to the growing body of literature that prophylactic indomethacin associated with an increased frequency of sip and that na s do not play a role in its appearance.

Daphna 1:08:32

I had two more, but I have one that I just like to touch on. Okay. This was flagged for us by Carolyn Jarman, who is an OT who listens to the podcast and follows us on Twitter. So thank you. This is entitled experiences of healthcare personnel with death and the neonatal intensive care unit, a systematic review of qualitative studies is in the archives of disease. I just think it's nice to see this type of article in print. And if you're, if you are a healthcare professional who is struggling with some of the grief, because of, you know, seeing death in the NICU, you're you're not alone. So that I think that's the first thing. But what they really wanted to study was, what are the main kind of themes and sub themes about health care professionals and their experience with death? So they looked at three broad themes they want, they looked at sources of distress coping mechanisms, and, quote, unquote, the way forward. So how do you continue to do the work in the face of these difficulties? And so I thought this was quite interesting and maybe will resonate with some of our listeners. The sources of distress included discomfort with death. And so maybe they did not have a lot of exposure to death, maybe there was limited training with end of life care or limited exposure to end of life care, poor communication. And so this is not surprising, but definitely if there were differences of opinions in providing palliative care, for example, like moving towards comfort focused care versus disease directive, curative treatment, so if there was conflict in the team, or conflict between the team and the family, this led to more distress in in healthcare professionals, lack of support. So in general, people felt they did not receive sufficient support from their organizations, from their peers, or from their loved ones. They felt that workplaces did not provide consistent psychological support, there weren't enough decrease debriefing sessions or they were done too late. And they had trouble. How do I put this they had trouble. They felt a lot of isolation because they didn't feel like people who were not in this experience. So you know, friends, family members weren't able to understand their suffering. Like to highlight this section, a lot of quote unquote, emotional struggles. So professionals suffered from feelings of guilt, helplessness and compassion, fatigue, felt guilty when they perceived care decisions potentially potentially caused more suffering to the child, or when they felt unable to answer parents questions about the child's uncertain prognosis. Some providers or professionals also felt guilty for their own emotional responses. They reported helplessness when witnessing suffering and eventual death of their patients. Many ascribe patients deaths to a sense of failure of their professional duty. Many people felt helpless when dealing with grieving families, especially those that they were unfamiliar with. And a lot of compassion fatigue in long term care settings and Aftering, after experiencing the death of many patients back to back, and methods of coping, so personal care is highlighted as important. So setting emotional boundaries, support from colleagues was very important, and clear communication and compassionate care. So this was interesting, because it means that if healthcare professionals felt that they provided compassionate care and clear communication, they had less distress around around the deaths. So this really highlighted the importance of shared decision making and anticipatory guidance for families. And they highlight well designed systems and protocols. So this makes sense having good psychological support, not just for patients, but also for staff, good education on how to manage palliative care cases, and the way forward. So highlights were finding meaning and depth, building deep relationships, both with their colleagues at work, but also with infant families, and finding purpose and pride in work. So I just thought this was a nice review article that I hope will resonate with some people and make them feel a little less alone. And it also highlights what an important role that we each individually play in supporting families and supporting colleagues. And hopefully, the more that we can talk about this sort of thing, you know, will help will help everybody. I guess, this is how I hope the dominoes will fall. You're talking but you're muted.

Ben 1:13:56

I was saying I agree. I think it's it's I think it's extremely, it's extremely difficult and and there was a shift, right, there's been there's been this shift that's that's happened in our training where we, especially our generation trained at a point where deaths in the NICU really slow down compared to the early days. And so I feel like in even in fellowship, it was more about how to deliver bad news rather than how to deliver how to deal with death as frequently as neonatologist did back in the 70s, for example. But yet now as the edges of viability are moving closer and closer to 22 and 21 weeks, then that is becoming a new reality that we have to adjust to and I feel like it's not something that we're extremely well equipped for. So I think it's important for us to wrestle with some of some of these, some of these situations, these feelings and have a proper proper support system as well.

Daphna 1:14:54

But I feel like we don't have to end on a doom and gloom, I think by identifying some of these feelings. was and opening opening to talking about them, and creating those levels of support that we can we can create a healthier working environment for professionals that maintains longevity, but also, you know, it doubles back to really support patients and family. I

Ben 1:15:16

mean, process, I'm taking you back to the doom and gloom, I think it's, it's going to be very difficult to do if the work environment does not provide a safe space for these conversations to happen. I think that's we're in a very competitive field where we're measured on outcomes. And if if, if you are in leadership, if you are in administration, creating a place where these situations are not likely, how do we sweep this under the rug as quickly as possible and move on? It's where really true leadership will shine because it takes it takes strength for for it to let the set you know, and let people talk about it and say, We're going to stay in that uncomfortable moment, and then let the support come together. Rather than just sit at home. Let's quickly move on. I don't want to talk about this again, that that's that's usually I think, what I've seen to be a lot of the initial response.

Daphna 1:16:11

Yes, and I think on an individual basis, I think just talking with your colleagues and saying like, that was hard, like what we just did was hard like did, are you taking care of yourself? Like do something nice for yourself? I think we can do that on a one on one basis. And that had some I agree.

Ben 1:16:30

I agree. I agree.

Daphna 1:16:32

I know you love talking about your feelings. I hate talking about my fine. No. I'm well aware. This article was for you.

Ben 1:16:46

Alright, we'll have some more. We'll have we're gonna have some board review this week, I think right. Yeah. So some people to look forward to that. And then we'll have Yeah, and we'll have some more videos of the Delphi Conference coming out. So stay tuned for that. All right. Bye. Thank you for listening to the incubator podcast. If you liked this episode, please leave us a review on Apple podcast or the Apple podcast website. You can find other episodes of the show on Apple podcasts, Spotify, Google podcasts, or the podcast app of your choice. We would love to hear from you. So feel free to send us questions, comments or suggestions to our email address NICU You can also message the show on Instagram or Twitter, at NICU podcast or through our website at WWW dot v dash incubator that org This podcast is intended to be purely for entertainment and informational purposes and should not be construed as medical advice. If you have any medical concerns. Please see your primary care professional. Thank you

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