Are we Measuring the Right Outcomes after Preterm Births?

November 08, 2022

Information

September 28, 2022

Annie Janvier, MD, PhD

Thuy Mai Luu, MD, MSc

Rebecca Pearce, MS

ID8240

To CiteDCA Citation Guide

00:00Well, I think we're going to get started.
00:03Welcome. My name is Mark Mercurio.
00:05I'm the director of the program
00:07for Biomedical Ethics and the
00:08Yale Pediatric Ethics program.
00:10And tonight's evening ethics seminar is
00:13hosted by the Yale PDF Ethics program.
00:15And I'm delighted to have three
00:18colleagues from from Canada from
00:20Montreal joining us tonight.
00:22We're going to talk about neonatal
00:24follow up and some of the things that we
00:27follow closely and some of the things
00:29that we value and and there's some
00:31great insights coming our way tonight.
00:33I look forward to the presentation
00:35and then and then the conversation.
00:38We will have about 50 or 60 minutes
00:41of of a presentation by our guest
00:44speakers and then followed by
00:46a question and answer session.
00:48So I asked you this,
00:49save your questions if you would
00:50and then send them through the Q&amp;A.
00:52Function on zoom and I'll take a look
00:54at those and then I'll moderate a
00:56session and be reading those to our
00:58guests tonight and we'll go through
00:59that and then we'll have a hard stop at 6:30.
01:01So my apologies to whoever has a really
01:04good question at 6:29 because I'm
01:05afraid we might not get to all of them.
01:08But let me go ahead and introduce
01:10the three speakers for tonight as
01:12we get into the conversation and
01:13in no particular order,
01:15and this might be the order
01:16that they're speaking in,
01:17but there's going to be kind
01:18of A tag team approach tonight.
01:20So I'm going to introduce
01:21all three speakers now.
01:231st is Doctor Annie John V,
01:24Who's a neonatologist and
01:26clinical ethicist in Montreal.
01:27There she is.
01:30Any,
01:30as,
01:31any,
01:31as many of you know Annie is on
01:34everybody's very short list of
01:36the of the neonatal and pediatric
01:39ethicist in North America.
01:41She's written a great deal.
01:43She's spoken all over including
01:44here at Yale before as many of you
01:47remember and she's a very valued colleague.
01:49And I'm grateful that Annie that
01:50you made time to join us tonight.
01:52Any Co directs the Masters and
01:54PhD programs in clinical ethics
01:56at the University Of Montreal and
01:58her main research interests.
02:00In bioethics,
02:01our decision making for fragile patients
02:03and family integrated care and Pediatrics.
02:06She investigates parent patient,
02:08family important outcomes after
02:09an accused stay.
02:11She has a Bachelor of Science
02:13from McGill University,
02:13a Doctor of medicine at University
02:16Of Montreal as well as it did
02:18her residency and fellowship,
02:19Excuse Me,
02:20residency at Montreal and her
02:22fellowship at McGill.
02:23And she also has a PhD in bioethics,
02:25medical ethics on from the
02:27University Of Montreal.
02:28So we say thank you very much and welcome to.
02:31Next I would introduce please
02:33uh Dr Tweed may Lou,
02:35who's a pediatrician and a medical
02:37director of the CSU San Justin
02:39Neonatal follow up program in Montreal,
02:41QC.
02:41He's also director of the Canadian
02:44Neonatal Follow-up Network,
02:45a research network consisting of
02:4826 neonatal programs across Canada.
02:50She received her MD from McGill
02:52and her pediatrician Reef
02:53from University Of Montreal.
02:55She then pursued further training at
02:57Brown with our friend Betty Gore.
02:59He completed a Masters degree in
03:02epidemiology and Biostatistics at McGill
03:04and is currently a senior research scholar
03:07from Quebec Health research funds.
03:09Her research focuses on long term
03:11neurodevelopmental and physical
03:12health outcomes following preterm
03:14birth from infancy to adulthood,
03:16is looking at risk and resiliency
03:18factors along with best screening
03:20strategies to enhance clinical follow-up.
03:23And the third speaker tonight
03:25is Rebecca Pierce,
03:27who who's who is the mother of Amarin Bargas,
03:31who was born at 25 weeks back in 2009,
03:33and Lily Barsness, Martins twin,
03:36who died one week after her birth.
03:38She's also the mother of Eleanor Barses,
03:40born at term in 2012.
03:42Rebecca has been a part of
03:44the Parents Voice project,
03:45which seeks to engage parents and Co,
03:47creating definitions of important
03:49outcomes of prematurity that may be
03:51different than outcomes that may be
03:52valued by clinicians and researchers.
03:54And this, of course,
03:55is the focus of our talk this evening.
03:57She's also the Co chair of the
03:59Canadian Premature Babies Foundation
04:01Family Advisory committee.
04:02Rebecca is the vice principal at
04:04Villa Maria High School in Montreal,
04:05and she holds a Bachelors degree
04:07in biology from Queens University,
04:08a Masters in biology from McMaster,
04:11and B Ed from Brock University.
04:13Rebecca is a PhD candidate in the
04:15Department of Integrative Studies
04:17and Education at McGill University,
04:18where she is studying the mathematical
04:21identities.
04:21Of extremely preterm children welcome
04:25Rebecca. Welcome to all three of you.
04:27And I believe that Annie is our
04:29first speaker tonight Doctor Jean
04:31view and am I correct in that?
04:34Actually no it's.
04:37It's it's going to be my OK well,
04:39thank you very much and we'll
04:41start take it away, Doctor Liu.
04:46Great. Thank you for this nice introduction.
04:49So I will now share the screen.
04:58Need a screen? Yeah, spiritually, OK. So
05:04we have, well,
05:04maybe we are conflicted people,
05:06but we have no conflicts to disclose.
05:10So today what we're going to do
05:11is I'm first going to discuss why
05:14neonatal outcomes are measured.
05:15Rebecca is then going to tell her story
05:17and we will then discuss results from
05:19the Parents Voice project that we've
05:21been conducting over the past few years.
05:24So as you all know,
05:25worldwide 10% of babies are born preterm,
05:28which means below 37 weeks of
05:30gestational age and about 1% are born
05:33extremely preterm before 28 weeks.
05:35And if we look at survival rate based on
05:38the Canadian neonatal Network annual report,
05:41it's quite high at 23 to 24 weeks,
05:44survival is 63%, at 25 to 26 weeks,
05:48it's 87% and survival rate
05:50is 94% at 27 to 28 weeks.
05:53So what's really important?
05:55Now is really to monitor how these
05:57preterm infants will grow and develop
05:59and these are some of the lovely kids
06:01I get to follow in that my neonatal
06:03follow-up clinic here in Montreal.
06:07So what do we do in
06:09neonatal follow-up program?
06:10So most often there are two mandates,
06:12a clinical one and an
06:14academic slash research one.
06:16So as a pediatrician working in
06:18the neonatal follow-up clinic,
06:19I will see my preterm babies
06:21to monitor their growth,
06:22their health and their own development.
06:24And the goal is to identify early
06:27cues or early signs that could be.
06:29The first manifestation of a problem.
06:31So I can refer this child for
06:34a further assessment or early
06:35intervention which is proven to improve
06:38over the long term functioning.
06:40I will also inform and help
06:42parents to their journey after
06:45their after neonatology and really
06:47guide them on what to expect in
06:49the future with their child.
06:52But as a researcher,
06:53I also collect outcome data.
06:55For example,
06:56outcome data is really important for
06:58benchmarking so we can identify targets
07:00for quality improvement endeavors,
07:02and it's also useful for many
07:04observational cohort studies
07:05that we do in clinical trials.
07:07But I also feed this outcome data to
07:09my colleagues in neonatology that will
07:12use this information to inform parents,
07:14and maybe we'll use it to make
07:16life and death decisions and
07:18prepare for the future.
07:20But what are you outcome data?
07:22What do we need exactly?
07:23So I'm showing here what we're
07:25doing as part of the Canadian unit.
07:27All follow up network,
07:28but this is pretty similar to
07:30what many large networks are
07:32doing in the states in the UK or
07:34in Australia and New Zealand.
07:36So we have a standardized follow-up
07:38visit at 18 to 24 months corrected
07:40age where all infants will have
07:41a neurological examination to
07:43identify signs of cerebral palsy and
07:45if the child has cerebral palsy,
07:47we then classify their level of
07:50motor functioning using the GMFCS.
07:52We also do a developmental assessment
07:54and many networks will be using
07:56the baby scales which will yield a
07:58developmental score for language,
07:59cognition and motor skills.
08:01And we also look at hearing based on
08:03audiology report and visual function
08:05based on ophthalmology or optometry report.
08:08And then what many people will do
08:11is determine whether this child has
08:14neurodevelopmental impairment or not
08:16based on presence of cerebral palsy,
08:18developmental delay,
08:19hearing impairment or visual impairment.
08:22So the child can either have no NDI,
08:24which means obviously none of these.
08:27If we then we could talk about
08:29mild and moderate and I and the
08:31definition might change by networks,
08:33but for us it's a child with several
08:35palsy with a gross motor function
08:36classification system of one or two,
08:38which means that later on this child.
08:41Might have some limping when he or
08:43she is walking or climbing up stairs.
08:46Might need braces,
08:47but is usually quite functional actually,
08:50like maybe for the GMFCS.
08:51Some people might not even notice
08:53that this child has several palsy.
08:55For developmental delay,
08:56that is based on a Bailey scale
08:59score below 1 standard deviation,
09:00below the mean, which means below 85.
09:02But some networks will be more
09:04severe and will use
09:05a definition of less than 70,
09:06which means below 2 standard
09:08deviation below the.
09:09And then a child with some degree of
09:12hearing impairment or visual impairment
09:14will usually enter this category.
09:16And then we have the severe ENVI,
09:18which are children with cerebral
09:20palsy that requires some,
09:22that will require help to emulate,
09:25most likely like they will need a
09:27wheelchair and depending on networks for
09:29us we use 345 as something as severe.
09:33But I know for example in Australia
09:34it's only children with a level four
09:36and five who are considered severe,
09:38which means that they do need
09:40someone to help them move around.
09:42For developmental delay,
09:43it's going to be 2 standard
09:44deviations below the mean,
09:46although like some networks will
09:47will use 3 standard deviations
09:49below the mean and severe,
09:51and the eye will also encompass
09:53severe hearing impairment,
09:54which means requiring hearing
09:55aids and bilateral blindness.
09:59So if we look at outcomes of
10:02babies born below 28 weeks,
10:03we have a survival rate overall of
10:0681% and majority actually don't
10:08have any NI with 55% with no MDI.
10:10Modern moderate is going to be about 29% and
10:13significant and there is going to be 17%.
10:15And if we look later on at 6 to 7 years
10:18that those are numbers from actually
10:21the United States by Susan Hintz,
10:2362% don't have any neurodevelopmental
10:25impairment, whereas moderate to
10:27severe ND I is found in about 15%.
10:32But what about the quality of life?
10:35If we look at studies from Sarah Segal,
10:37who is our, I would say our up program
10:40free of neonatal follow up here in
10:43Canada using objective measures,
10:44health related quality of life will
10:46be rated as worst in individuals born
10:49preterm when compared to full term controls.
10:51But if you actually ask preterm
10:54more more subjectively,
10:56it is similar to control born full term.
11:00And that actually leads me,
11:01if you look at this kid, you know,
11:04this kid has cerebral palsy,
11:05he needs a Walker to walk around.
11:07So he's actually with a gross motor
11:10function classification system of three.
11:12So in many networks that would be
11:15considered severe neurodevelopmental
11:17impairment and actually based.
11:19On this kid who will feed many statistics,
11:22maybe some, you know,
11:23maybe some kids in the NICU will.
11:26Will be faced with the decision of
11:28maybe withdrawing care or even not
11:30starting care because, you know,
11:32maybe they're at risk of severe and die.
11:34But I would argue that, you know,
11:36when I look at this kid and I see
11:38several of them, he looks pretty happy.
11:41He's actually having fun,
11:43he's having friends and he's able,
11:45even though he has some motor limitation,
11:47he's actually able to move
11:50independently around.
11:51So,
11:52you know,
11:52is that really severe and should we be
11:55making a decision based on a child?
11:57Has some difficulty walking.
12:00This is really like somewhere where I
12:02got a little bit uncomfortable with
12:04this whole notion of severe and I as
12:07a pediatrician and I will now turn
12:09to let Rebecca talk about her story.
12:15Thank you so much, Mike.
12:17So on Monday, September
12:1921st, 2009, my children Mary and Irene
12:21and Lily Ruth were born at 25 weeks and
12:24five days gestational age, weighing
12:26760 grams and 840 grams respectively.
12:29It was my first pregnancy,
12:31and they were born after a week spent
12:32at Saint Justine Hospital in Montreal,
12:34where doctors had tried to stop my labor that
12:37had unexpectedly started three days prior.
12:39My husband Jason and I at that time
12:41had no idea what it meant to give
12:43birth to babies who were so premature.
12:45And the next months would prove to be the
12:47most traumatic and difficult of our lives.
12:49The following Sunday week after their birth,
12:51will we developed an infection that led to
12:54intestinal damage and a brain hemorrhage.
12:55And she died that afternoon.
12:57And in fact, yesterday was the
12:5913th anniversary of her death.
13:00It turned out that Marin had the
13:02same bacterial infection and she was
13:04started on a course of antibiotics
13:05several weeks after birth.
13:06She required a PDA allegation that was risky.
13:09Because of her instability.
13:10She caught a fungal infection
13:12that needed treatment.
13:13She developed severe BPD.
13:15And spent lots of time on 100% oxygen
13:17or in a high frequency ventilator and
13:19had a number of respiratory crises.
13:22She was on a ventilator for a total
13:24of seven weeks and she required
13:25steroids to wean her from it.
13:27Finally, about two months into her NICU stay,
13:29things started to stabilize.
13:31Maren kept slowly growing and progressing,
13:34and after about three months she was
13:36finally moved to the intermediate facility
13:37where we could prepare to take her home.
13:40A few weeks before we thought
13:41Marion might finally be discharged,
13:43we were approached by a doctor
13:45about performing a head MRI on her.
13:46At the time, back in 2009,
13:48this was standard for babies born below
13:5026 weeks gestational age at Saint Justine,
13:53and we agreed without really
13:54thinking about it.
13:55Shockingly,
13:56the MRI results indicated that
13:57there was moderate damage to marine
14:00cerebellum caused by a previously
14:01undetected brain bleed.
14:03This news was completely unexpected
14:04to us and nobody could really tell us
14:07what this devastating diagnosis meant.
14:09So with this knowledge, Marin.
14:10Discharge from the hospital at
14:12the end of January 2010,
14:13four months and one week after her birth.
14:16Most people like me have no idea about
14:18the impacts of preterm birth on long term
14:21outcomes and the development of children.
14:24I did know my way around things
14:25like Google Scholar and PUB Med,
14:27so I turned to the medical research
14:28literature to try to get an idea,
14:30like a crystal ball,
14:31of what marini's medical history
14:33might mean for her future and for us.
14:36Now remember that Marian was born at
14:38under 26 weeks gestational age weighing 760.
14:41Grams she had PDA surgery,
14:43a number of infections,
14:44was on a ventilator for seven
14:46weeks and needed steroids.
14:47She came home on oxygen.
14:49She couldn't be held for weeks
14:51after her birth,
14:51and she had cerebellar damage.
14:53So what do you think the
14:55research told me about
14:57the outcomes of a child like this?
14:59So as my discussed,
15:00there's a substantial focus in
15:02pre term birth outcome research
15:04with neurocognitive outcomes or
15:07MDI neurodevelopmental impairment,
15:08for example blindness, deafness,
15:10cerebral palsy and IQ of less than 85,
15:13but also things like learning
15:15disability and vision problems.
15:17The problem with these measures that
15:18they are reported as dichotomous,
15:20so either a child has them or
15:22they don't without acknowledging
15:23that most of these outcomes are
15:25continuous and fall within a range.
15:27For example,
15:28we know that children can have a variety of.
15:30Vision problems or a diversity of
15:32learning differences or disabilities.
15:34There's also very little research that
15:36looks at what these neurocognitive
15:37outcomes mean for the quality of life
15:39and for the day-to-day functioning of
15:41preterm children and their families.
15:43Darren had lots of visits to seeing
15:45Justine to the follow-up clinic where
15:47she was given tests such as the
15:49Bayley scales of infant development.
15:50And we know that welby's tests
15:52can identify children that may
15:54need more follow-up care.
15:55They actually have limited predictive value,
15:57so they might actually be
15:59unhelpful or relevant for parents.
16:00Most of the outcome measures that
16:02have been chosen for research have
16:04been chosen by neonatologists,
16:05developmental psychologists,
16:06or clinicians without considering
16:08what parents or families feel
16:10are important or impactful.
16:12As an example,
16:12Marin had to be hospitalized with pneumonia
16:15numerous times before her third birthday,
16:17which was very difficult for all of us.
16:19There's very little, if any,
16:21research that considers rehospitalization
16:23as an impactful outcome.
16:25I really wanted to know how
16:26families cope with the stress,
16:28the uncertainty,
16:28and the potential difficulties of having a.
16:30Preterm child but information about
16:32this is very hard to find as well.
16:34What was very easy to find was
16:37medicalized deficit based research
16:38that focused on all the problems
16:40that preterm children as a group
16:42have without any sort of discussion
16:44or examination of their positive
16:46attributes and what they can do and be.
16:49I was recently reading a study that
16:51asked about parents perceptions of
16:52the health related quality of life
16:54of preterm children with severe BPD.
16:56The authors of the paper noted that the
16:58normal emotional health of these children.
17:00Maybe an area of resilience
17:02that's unrecognized.
17:03And I thought that was really funny
17:05because parents clearly recognize
17:06that their children are resilient,
17:08but it's the research community that doesn't
17:10really value this as an outcome to study.
17:12I find it very strange that as a
17:14society we spend huge amounts of time,
17:16money and effort to medically
17:18intervene to save preterm children,
17:20only to turn around and spend more time,
17:22money and brainpower to conduct research
17:24that suggests how atypical they are and
17:26how in most measures they are inferior.
17:29As you will see from some of the
17:30data that we'll present in this talk,
17:32parents are pretty realistic about
17:33the concerns for their children,
17:35which do include developmental
17:37delays and difficulties in school.
17:39However, for many parents,
17:39this is just part of who
17:41their child is,
17:42and it doesn't necessarily have a
17:44massive impact on their day-to-day
17:45quality of life or their happiness.
17:48The voices of parents and children are
17:50largely absent in outcome research,
17:52although this is slowly starting to change.
17:54These voices are really important
17:55because they provide a critical
17:57counterpoint to deficit based.
17:59Research. For example,
18:00as my just mentioned,
18:01studies that examine the quality
18:03of life and function of extremely
18:04preterm children as they get older
18:06have shown that these individuals
18:07generally rate their quality of
18:09life and their happiness as equal
18:11to that of their term born peers.
18:13The majority of extremely preterm
18:15children end up as adults who are content,
18:17employed, living independently,
18:19and are contributing members of society.
18:22But this pretty important information
18:23gets drowned out by research that focuses
18:26on what's wrong with preterm children,
18:28one of the reasons why.
18:29This parent centered research is
18:30of great interest to me is because
18:32I was curious to learn about other
18:34parents responses to their preterm
18:36birth and how they regarded the
18:38impact of prematurity on their lives.
18:40This is information,
18:41information that's really missing
18:43from research and that could be
18:45of great benefit to everyone.
18:47So today, Marin is a happy,
18:48healthy 13 year old.
18:49She started Grade 8 this year,
18:51her second year of high school in Quebec,
18:53and despite being one of the
18:54youngest children in her class,
18:56because the grade cutoff is the
18:57end of September here and being
18:59born four months premature,
19:01things are going pretty well.
19:02She takes the metro to school
19:03by herself each morning.
19:04She's made good friends.
19:06She's bilingual,
19:06she loves to read and ride her bike.
19:08She plays the piano and is
19:10learning the flute.
19:11She swims and figure skates and does karate.
19:13She also has a slower processing
19:15speed and a weak working memory.
19:17And was diagnosed with a
19:19math learning disability.
19:20These are all hallmarks of
19:21extreme prematurity that we can
19:22read about in the literature,
19:24and they would certainly make
19:25her less than perfect in the
19:27eyes of a follow up physician.
19:28But they don't define humaran is,
19:30and they really matter less in
19:32day-to-day life than one might think.
19:34Marin also, as I said, has friends.
19:36She's kind, she's exceptionally hardworking,
19:38happy and again resilient,
19:40which are traits that many other
19:42preterm children possess but that have
19:44been neglected in outcome research.
19:46So are we asking the right questions?
19:48The outcome research what is the
19:50purpose to some of the research
19:52that can is conducted?
19:53How is it actually contributing
19:54to improving the lives of preterm
19:56individuals and their families?
19:58Remember that a lot of outcome research,
19:59or at least some of it,
20:00is picked up and reported by popular media,
20:03and this unfortunately shapes
20:04people's perception of preterm
20:06individuals as somehow damaged.
20:08Outcome research is very important
20:09for a number of reasons,
20:11but it needs to be balanced.
20:12We all know that's extreme.
20:14Prematurity is devastating.
20:15There's nothing good about being born four
20:17months premature. However,
20:19most preterm children are regular kids,
20:21and they're prematurity doesn't negatively
20:23impact them on a day-to-day basis.
20:25Most preterm children do OK
20:26in school and have friends.
20:28Most preterm children are hay.
20:30Most preterm children do not have
20:32serious long term health problems.
20:34Most preterm children are independent
20:36and functional members of society's.
20:38Most preterm children
20:39are strong and resilient,
20:40and the parents of these children
20:42love and value them no matter
20:44what their neurocognitive status.
20:46So again, I'm only one person and
20:48I've clearly explained my perspective.
20:50But the bigger question is how can
20:52we integrate parental perspectives
20:53into the larger research picture O.
20:55This includes using different
20:56methodologies to rigorously investigate
20:58what matters to families and what
21:01parents consider to be important outcomes,
21:03with the aim of improving research
21:05into what's meaningful to,
21:06again, parents and families.
21:09So in 2018 Megaville,
21:11Jaworski and Montreal and her
21:13co-authors published a paper
21:15entitled Parental Perspectives
21:16regarding outcomes of very preterm
21:18infants towards a balanced approach.
21:21190 parents of infants born at
21:22less than 29 weeks gestational age
21:24were asked to open-ended questions
21:26that their children's 18 to 22
21:28month neonatal follow-up visit.
21:30These questions were what are
21:31your concerns or what concerns
21:33you most about your child?
21:34And please describe the best
21:36thing about your child or what
21:37is positive about your child.
21:39Data were analyzed thematically
21:41and there were 180 again parent
21:43responses plus the corresponding
21:46neurodevelopmental data.
21:47So the results show that 73% of
21:50parents had both positive and
21:52negative comments and concerns,
21:54and 27% of parents,
21:56interestingly,
21:57had only positive comments to
21:59say about their preterm children.
22:00There was also a minimal association
22:03between parental answers and the presence
22:06or level of disability of their child.
22:08There were many positive themes that emerged
22:10from the answers to the two questions,
22:12themes that are not currently
22:14measured in outcome research.
22:15These themes related to the personality,
22:18Happiness,
22:18health,
22:19and developmental outcomes
22:21that exceeded expectations,
22:22and all parents had positive
22:24outcomes to say or positive comments
22:26to say about their children.
22:28There were also parental concerns
22:30or negative themes,
22:31including developmental concerns,
22:32physical health concerns and parental
22:35concerns about children's future,
22:37again many of which are not
22:39measured in outcome research.
22:40And some parents also explicitly said that
22:42they had no concerns about their child.
22:45So,
22:45as Annie said to me,
22:46this paper was really a kick in the ****.
22:48That led to the idea of asking
22:50more parents similar questions
22:52in a more rigorous fashion.
22:53There was also an editorial published
22:55in 2018 called What Parents Want
22:57to know after preterm birth.
22:59That included some very relevant
23:01questions and conclusions.
23:02Most notably,
23:03why has neurodevelopmental
23:04impairment been chosen as a measure
23:06of an accused success?
23:07Why has it become central to the
23:09way that doctors counsel patients
23:11and discuss prognosis with them?
23:13And to doctor's answers all address
23:15the real concerns and needs of
23:17parents of infants form pre term.
23:18And the authors also noted that it's
23:21imperative to redefine the way that
23:23outcomes are described after preterm birth.
23:26So thank you for listening and I will now
23:28turn turn things over to my pardon me,
23:30who will start to discuss the parents.
23:31Voice project.
23:37So following this first work,
23:39we launched the Parents Voice
23:41project with the support from the
23:44Child Bride network and this was
23:46this is the work from an amazing
23:48group of ladies from across Canada.
23:51Happens that there's no man,
23:53but this is how it is.
23:56So the goal of the parents Voice
23:58project was really to engage
24:00parents to Co create definitions of
24:02neurodevelopmental impairment and
24:03also to determine what were outcomes
24:05that they valued as important.
24:07So there were several projects
24:09that will be presenting today.
24:11The first project was to compare
24:14neurodevelopmental impairment
24:15classification as per parental
24:17view compared to the medical
24:19definition that is used by CNN Fun.
24:21So what we did was over a year period
24:23all parents are very preterm infants
24:25who were attending a neonatal follow-up
24:28clinic through in the as part of the
24:30CN Fund 18 to 21 month visit were
24:33eligible to participate and they were
24:35asked this specific question that was
24:37done prior to the standardized health
24:39and neurodevelopmental assessment.
24:41So we asked them.
24:42Please tell us how you would
24:43rate your child's development.
24:45Parents could choose.
24:46I think that my child is developing normally.
24:49I think that my child has a
24:51mild developmental impairment,
24:52a moderate impairment or a severe
24:54impairment and what would what we
24:56did was to compare their response
24:58to CNN fund classification of
25:00neurodevelopmental impairment.
25:04So overall we had over 1000 responses and
25:07you can see that agreement of parental
25:10classification versus the CNT fund
25:13classification is not so great with.
25:16A cup of 0.29 so if we look
25:19at CNN classification of 54%
25:22of children had no ND I,
25:24but when we look at parents
25:27classification that was higher at 68%.
25:29Interestingly,
25:30when we compare CNN fan
25:33and parents Classification,
25:3480 to 83% agree regarding children
25:38with no ND I.
25:40However,
25:40if a child was classified as having mild
25:43to moderate neurodevelopmental impairment,
25:46only 40% of parents agreed.
25:49And if we look at significant
25:52neurodevelopmental impairment,
25:53only 12% of parents agree.
25:56And as you can see most of the time
25:58they would classify their child or
26:00rate them as less severe as what
26:03CNN found with with determined.
26:05And when we looked more granularly
26:07at the data,
26:09things like mild or moderate
26:10language delay was not something
26:12very significant for parents and
26:14also hearing like having a hearing
26:16aid but being able to function
26:18was not really considered.
26:20Significantly as a significant
26:22role developmental impairment.
26:25So in summary,
26:26results only showed only fair
26:28agreement between parents perspective
26:30and healthcare provider as per the
26:32in terms of NOI and children born
26:35very preterm and parents were more
26:37likely to describe their child
26:39development as not or less impaired.
26:47So the second project
26:50in the Parents Voice project was to
26:52use vignettes to evaluate parental
26:55perceptions of the severity of visibility.
26:59So we created vignettes based on CNN fund
27:02definitions of a severe that we now use
27:06significant disability because parents
27:08don't want us to use severe disability.
27:11And after creating all these vignettes,
27:14the survey was distributed to parents
27:17of very preterm children and parent
27:19foundation that made this survey
27:21available to parents and stakeholders.
27:24So this was really Internet
27:26based and widely distributed.
27:30So I'll give you an example of one of the
27:34vignette of Jamie, who's 18 months old,
27:37who can sit with support and roll in,
27:39creep on his stomach.
27:40He has stiff legs and will very likely use
27:43a weak wheelchair for longer distances.
27:46Then we describe that all the rest is normal.
27:49So Jamie is a child with significant
27:54ND I and who has cerebral palsy,
27:57isolated cerebral palsy.
27:59So we ask Questions 2.
28:01Questions after each vignette.
28:03If zero is the worst possible health,
28:06intent is the best possible health.
28:08Where do you think Jamie is
28:10on this scale from zero to 10?
28:13And does Jamie's case describe
28:15a severe health condition?
28:17And they could say yes, no, or they did.
28:20They didn't know.
28:24So we had 800 participants,
28:27827 participants from all over the world,
28:29mainly parents of extreme preterm infants,
28:32but some preterm infants who were older
28:35and some clinicians in neonatology.
28:37And you can see that the child with
28:40no impairment received immediate
28:42evaluation of 10 and that actually
28:47the child getting the worse
28:49evaluation or the vignette with the
28:51worst evaluation were the children.
28:53With visual impairment,
28:55language and cognitive delays or
28:57cerebral palsy and language delay,
28:59but they were not at 2110,
29:01they were on the median of six
29:04on 10 with all the other severe
29:08disabilities that we call severe rated
29:11at 7 on 10 or higher by parents,
29:14mainly by parents.
29:16So you see that not all severe
29:19disabilities are evaluated the same.
29:23When we asked participant
29:25is this vignette does it,
29:27is it a severe health condition?
29:31You can see that only cerebral
29:33palsy and language delay only there
29:36did participant 55% of them judge
29:39it was a severe health condition.
29:42All the other severe conditions that
29:44we call severe as neonatologists
29:47and clinicians and researchers were
29:50considered severe by less than half.
29:52Of participant.
29:56So the summary of the vignette study
29:59shows that clinical vignettes are
30:02ranked differently by individuals
30:04that are not researchers or
30:07clinicians and neonatology.
30:09They're not ranked the way disabilities
30:12are classified in neonatology.
30:14The percentage of respondents
30:16who perceive the vignette to be
30:18severe differs significantly.
30:20Even within participants.
30:22The combination of cerebral palsy
30:24and language delay was perceived
30:27to be the most severe vignette and
30:29cognitive delay as the least severe,
30:32and many delays described as
30:34severe are not perceived as severe
30:37by parents and stakeholders.
30:45So I'll be presenting
30:46the third part or the third study here,
30:48which was looking at parental perspectives
30:51in relation to four different areas.
30:54So the health of parents,
30:55premature baby, the impact of
30:57prematurity on the lives of parents,
30:59parents need for information about
31:01prematurity and any decision or
31:03regrets that parents might have had.
31:06So between 2018, July 2018 and July 2019.
31:11All of the parents of children who were
31:13seen at the Saint Justine unital follow-up
31:16clinic for their 18 month to 7 year visits,
31:19who were born at less than 29
31:21weeks gestational age were invited
31:22to participate in this study.
31:24Parental perspectives were
31:25measured through a questionnaire,
31:27and this questionnaire was administered
31:29in a variety of different ways in
31:31order to get as many participants
31:33as possible so it was given online.
31:34Parents could answer verbally,
31:36over the phone or in person by interview,
31:38or they could write their answers on paper.
31:41The data were analyzed thematically
31:43by a multidisciplinary research team,
31:45including a neonatologist,
31:47developmental pediatrician,
31:48sociologist,
31:49parents and medical students,
31:51and coding of the data was done by
31:53teams of two independent reviewers.
31:56So this just shows the participants
31:58in the study.
31:59So 83% of parents who are eligible
32:03for follow-up were contacted and
32:0598% of parents who came to follow up
32:08actually participated in this study.
32:09So for a total of 248 parents of
32:12213 children, so in a very, very,
32:14very high participation rate.
32:17These are the characteristics of the
32:19children who are part of this study.
32:21So the mean gestational age was 26,
32:23just under 27 weeks.
32:25And you can see here that the other
32:28statistics are fairly characteristic
32:30of children who were born at 26 weeks.
32:33So the first question that parents
32:34were asked was to rate your child's
32:36health from the point of view or
32:38your point of view on a scale of
32:400 very poor to 10, excellent.
32:41So the median rating for all parents was
32:44a nine with a range of ratings from 3 to 10.
32:47There was a relationship between
32:49diagnosed and DI and parents rating
32:51of their child's health and that
32:54parents whose children have been
32:55diagnosed with significant ND I rated
32:57their child's health is significantly
32:59worse than parents with mild or whose
33:02children had mild to moderate ND I.
33:03Or no NDI.
33:04However,
33:05you can still see that even the
33:07parents of children diagnosed with
33:09significant NDI rated their children
33:11with the median rating of just over 7,
33:13which is we could argue is is fairly high.
33:17Parents were then asked if you
33:18could improve up to two things about
33:20your child's health or development.
33:21What would they be?
33:23So 55% of parents identify development
33:25is something that they would like
33:26to improve about their child,
33:28including language, communication,
33:29behavior and emotional health,
33:32motor development,
33:32and cognitive and learning skills.
33:34This is followed by 1/4 of parents
33:36who responded,
33:37respiratory health and the
33:38respiratory fragility.
33:39And finally,
33:4014% of parents identified nutrition,
33:43feeding and growth.
33:44And interestingly,
33:4519% of parents explicitly said
33:47that they wouldn't improve.
33:48Anything about their child's
33:50health or development.
33:52Parents were asked to choose the
33:54statement that best fit their situation
33:563/4 almost 3/4 of the parents said
33:58that their child's prematurity had or
34:00has both positive and negative impacts
34:02on my life and my family's life.
34:04And again, only 7% of parents
34:07that their child's prematurity
34:08had only negative impacts on their
34:10life or the life of their family.
34:13Parents were then asked to tell or to
34:15explain one or two positive impacts
34:16of their child's birth that they
34:18consider to be the most important or
34:20impactful for them or their family.
34:2248% of parents identified that
34:24their child's birth had given
34:26them a different outlook on life
34:28and a greater gratitude for life,
34:3033% identified with their child's birth
34:32had resulted in stronger family connections,
34:35and 28% of parents view
34:37their child as a gift.
34:40These are some of the quotes
34:41of parents from the study.
34:43So one parent said,
34:44my baby has brought together
34:45our family and friends.
34:46We see life differently,
34:48including the importance of the
34:49present moment and letting go.
34:51My child is a miracle in our lives
34:52and his strength and resilience
34:54give me strength and resilience,
34:55and my daughter's birth has helped
34:57me learn to focus on the present.
34:59Along with learning that
35:00nothing is impossible.
35:01Seeing her walk,
35:02talk and doing something as simple
35:04as breathing is just so amazing.
35:06Parents were then asked to explain or
35:08to discuss one or two negative impacts
35:10of their child's preterm birth that
35:12they consider to be important to them.
35:1542% of parents said that parental
35:17stress and anxiety resulting from their
35:19child's birth were very significant,
35:2136% identified that they had a loss
35:23of family balance and equilibrium,
35:2621% identified their child's development
35:28as having a negative impact on their life,
35:30and 19% of parents still view
35:33their children as vulnerable.
35:35So one parent or one mother identified
35:37the fact that she had constant
35:39fears during her second pregnancy.
35:41My career dreams extinguished,
35:42this was a mother as well,
35:44another parent said.
35:45Although he is doing amazingly well,
35:47there's still a lot of anxiety
35:48about what the future will hold,
35:50feelings of experiencing motherhood
35:52abnormally and loneliness.
35:54And another set of parents or mother
35:56said the fear of losing our babies,
35:58the hypervigilance that's persisted
35:59since we left the hospital.
36:01And interestingly,
36:01those parents were parents
36:03of twins and their children.
36:05Are not 18 months old.
36:06I think they were five years old at the time,
36:08or a lot older than babies still,
36:10and they're still worried about
36:12their children.
36:13Parents were asked,
36:13knowing what you know now,
36:14what you wish doctors would have
36:16told you about prematurity before
36:18or after your child's birth.
36:19So the good news is that 50%
36:21of the parents were explicitly
36:23satisfied with the information that
36:24they received from the doctors.
36:25At Saint Justine,
36:2821% of parents would have liked
36:29more information for their
36:31return home with their baby.
36:32So this included things about
36:33what to expect for the baby's
36:35future health and development,
36:36the types of follow up that
36:38they would need to undergo,
36:39and the you know the frequency of
36:41this follow up and also practical.
36:43Considerations like daily
36:44life with a a preterm baby,
36:46how to care for their baby,
36:47and what supports were out
36:49there for them as parents.
36:51Then parents were asked,
36:52knowing what you know now,
36:54which you wish that doctors would have told
36:56you about prematurity before and after.
36:57Sorry, this is the same question.
36:5916% of parents wanted more practical
37:01information on their NICU stay,
37:03so they wanted to know what role
37:05they would have undertaken as
37:06parents earlier and get involved
37:08with the care of their baby.
37:10They would have liked to know more
37:12information about the trajectory of
37:13their baby in the NICU and also ways to
37:16prevent the complications of prematurity.
37:18And finally,
37:18maybe most importantly to me anyway,
37:20as a parent.
37:2114% of parents wanted a better style of
37:24communication with medical professionals,
37:26so they wanted more optimism from
37:28doctors specifically and better
37:30parent medical team interactions in
37:32order to engage them more as parents.
37:35So these are some of the quotes from parents,
37:37so speak to us about positive stories too.
37:39Not only the negative and
37:41the bad that can happen.
37:42It's impossible to live
37:43in fear after the birth.
37:45We want to have ideas of what we can expect.
37:47And even if each child's
37:48journey is different,
37:49I would have liked to have been better
37:51equipped for going out with all the bacteria.
37:52How to manage this, what to do and not to do?
37:55How to protect him the most without
37:57having him hospitalized every two weeks.
37:59In any case, give parents the
38:00tools so this does not happen.
38:02And you can tell this parent
38:03wrote this themselves.
38:04All the exclamation marks.
38:05Written by the parents.
38:07And finally,
38:07don't just speak about cerebral palsy,
38:09but what we can do in a
38:11practical sense is a family.
38:12How many appointments?
38:13Where? For what?
38:14What does it mean for others?
38:15The good and the bad.
38:16A diagnosis doesn't help much.
38:18What we can do about it actually helps.
38:21And finally, parents were asked,
38:23knowing what you know now,
38:24what would you have done differently?
38:2754% of parents explicitly again so that they
38:29wouldn't have done anything differently.
38:31They felt that they did what they could
38:33and what they were told to do in the NICU.
38:3522% of parents would have
38:36made changes in the NICU,
38:38including self-care and better
38:40communication with medical professionals.
38:4216% of parents,
38:43which again I think is this
38:45is a significant statistic.
38:47Mostly mothers still feel guilt
38:48about preterm birth prevention and
38:50they really feel like there was
38:51something that they could have.
38:53For sure should have done in
38:54order to prevent the premature
38:56birth of their child.
38:57And finally,
38:589% of parent have regrets
39:00considering parental roles,
39:01their parental role, me,
39:02NICU and felt that they should have
39:04spent more time in the hospital.
39:06And interestingly,
39:06no parents reported regretting life
39:09and death decisions for their child.
39:11So some of the things that parents
39:13said in response to this question,
39:14I would have listened to the nurses
39:16and gone to sleep because we spent 18
39:18hours a day in the NICU near our babies.
39:20I would have consulted the
39:21psychologist of the unit. Immediately,
39:23instead of consulting five years after birth,
39:26I would have liked to know what parents
39:27can do earlier to get involved.
39:29And finally,
39:30I would have pushed for better care
39:31and monitoring during pregnancy.
39:33And when I thought something was wrong,
39:35I felt as though I wasn't listening
39:36to you and I thought I was in
39:37labor when sure enough, I was.
39:44So I have
39:44the closing slides, the voice of parent
39:48project and many other
39:50parent perspective projects
39:53demonstrate humility and curiosity
39:56and that we should have a lot more in
40:00neonatology to do research with families,
40:02not just research about families or children.
40:06And we have to remember that we're
40:08the experts of patients healthcare.
40:10But parents and families are the expert of
40:13their children and their couple, their life,
40:16their family and their loved ones.
40:20So measuring the all the
40:23patient important outcomes,
40:24it's getting done more and more,
40:27but it's complex and there's
40:30this is a our vision.
40:33So it's not a new universal vision,
40:35but the mistake number one that is
40:38done quite a bit in patient oriented
40:41research is to validate medical
40:43important outcomes with stakeholders.
40:45So for example to take all
40:48the three letter words.
40:50Acronyms that we don't in
40:51unitology for a bad outcome,
40:53for example BPD and US stakeholders parents,
40:57is BPD important to you?
40:59Is a Grade 3 bleed important
41:01to you without actually asking
41:04parents what is important to them?
41:06So trying to again put the parent
41:09in the mold and say look at our
41:12mold and look at what is important.
41:15The other mistake is to seek a consensus.
41:18Parents are all different and this
41:20is very important even for prenatal
41:23counseling or speaking, speaking to families.
41:25And you can see that even when we
41:28presented what we call doctors,
41:30severe disabilities,
41:32parents didn't all agree.
41:35Most often it was 50% or less
41:37that agreed together.
41:38And for example,
41:40parents who are musicians
41:42being deaf may be way more significant. Then
41:46for parents who are deaf themselves.
41:50And the third mistake is to
41:52do research about parents.
41:53I'm not with parents and not engage
41:56parents in Co construction of
41:59protocols or of even analyzing text.
42:02So it was very interesting when we were
42:05reading the stories of the parents to
42:08see different views for for example,
42:10a child who was he runs everywhere,
42:13he's so happy, he laughs all
42:15the time and sings all the time.
42:17But Rebecca saw a happy child.
42:20I saw a happy child,
42:22but those in rehab and follow up were like,
42:24Oh no, hyperactive child.
42:26So you can see that even subjectively
42:29interpreting what parents were saying
42:32had to be done by groups to decrease
42:34the bias of how we read parents stories.
42:40So there's two slides with recommendations.
42:43In our opinion, it's essential to
42:46redefine outcomes and classification
42:47of outcomes after preterm birth.
42:49This is how we describe how preterms do
42:53and this is not how parents describe them.
42:57Function should be measured
42:58as opposed to diagnosis.
43:00We know that too from the literature
43:03of children who live with trisomy 21.
43:06Resilience and adaptation
43:08should be mentioned to families.
43:10This is what families tell us.
43:11It's really difficult,
43:13but the majority of them of them
43:16told us that and give them examples.
43:19We have to avoid conflating
43:22outcomes into a severe category.
43:24And even worse,
43:25we often we didn't speak about this,
43:28say death or BPD.
43:30We should say which kids survived
43:33and then which kid have BPD.
43:35And we shouldn't consider severe categories,
43:38we should describe them.
43:40And there is no other place in medicine
43:43where outcomes are conflated this
43:45way of outcomes that don't mean the
43:48same thing into a severe category.
43:50So we don't have death or colostomy
43:53described to a patient who has colon cancer,
43:57nor a severe outcome.
43:59They will describe each outcome
44:01individually in a functional manner.
44:03They won't see a colostomy,
44:04they'll say a stool,
44:05a bag that collects tool and speak about
44:07if it's reversible or not, for example.
44:10So the leader function.
44:13To families,
44:13we should describe functional
44:15outcomes in a balanced fashion,
44:17not severe disability which
44:20is unfortunately done.
44:21For example after a great for bleed.
44:24Acceptable would be to say
44:26your child may be deaf,
44:28but preferable and optimal would say
44:31your child may need to use hearing
44:35aids or cochlear implants to hear.
44:37To tell parents their kid has a
44:40risk of BPD is should not be done.
44:42We can see the risk of going home
44:45on oxygen and what that means or
44:48rehospitalization or what it actually means.
44:50That pulmonary important outcomes.
44:51And we're working on this to
44:53actually speak to parents what
44:55it means in their daily life.
44:56It's not the three letter word,
44:58it's where they're more stuff
45:00that it means for them.
45:03So the key messages are that
45:05parents generally have a positive
45:07perception of their child,
45:09and this confirms prior research.
45:13Developmental issues are still a
45:14main concern, but we even signed the
45:18developmental issues that behavior and
45:20emotional outcomes were more important
45:22to parents than they were to us,
45:24and other outcomes that were important to us,
45:27such as their cerebral palsy,
45:28were considered less severe, significant.
45:33Some parental concerns are
45:35forgotten in our outcome measures,
45:37such as respiratory health,
45:40rehospitalization, fragility,
45:41eating, nutrition and sleeping.
45:44For some parents, when they considered
45:46their child to be significant,
45:48to have a significant impairment,
45:51it was often in those spheres
45:53when we considered them normal,
45:55quote UN quote.
45:57Parents describe both positive and
46:00negative impacts of prematurity,
46:03although scientific literature tends
46:05to emphasize or not even emphasize,
46:07only look at the negative.
46:10The themes of resilience and positive
46:13transformations are clear in our research,
46:15but they are not in usual outcome research,
46:19and parents would really benefit
46:21from hearing that it is not
46:24always like this and that most
46:26parents find something positive.
46:28Parents who don't want more
46:30practical guidance, again,
46:31a function, not a diagnosis.
46:34What that means for the family?
46:36More optimism and more fluid
46:38communication with the medical
46:39team of how they can team up with
46:42clinicians to help their baby.
46:45So finally,
46:46the classification we use in unitology
46:48is suboptimal and doesn't correspond
46:50to the lived experience of parents.
46:53It's more optimistic and
46:55generally misses the point.
46:58So I'll actually stop sharing
47:01our presentation or slides,
47:03so you can ask US questions.
47:07And we will all gather together.
47:11I thought we will pass through top plus.
47:15This
47:15was an absolutely marvelous presentation.
47:18Thank you. Thank you both.
47:19Thank you all three of you so
47:21much for this terrific talk.
47:22There's there's a lot to lot to
47:24unpack here and this is where the
47:28neonatology fellows are on the line.
47:30This is, this is really
47:32serious and important stuff.
47:34And let me first just say let you
47:36folks know that that's the way the
47:38questions will be asked is if you
47:40would please send your questions in
47:42through the Q&amp;A function on zoom and
47:44then I'll read them to the speakers
47:46and we can and we can go from there.
47:48But let me take the privilege
47:50of of doing the,
47:52the the first question and it's I
47:54mean I I was jotting down stuff.
47:56This is really,
47:57this is really important and it it
47:59strikes me essentially which I think
48:00is your point and it's so beautifully
48:02presented in this particular.
48:04Presentation the way you did it,
48:05but also in these data,
48:06which I'm very,
48:07very anxious to see published and I
48:09really look forward to having it so that,
48:11you know, we'll,
48:12we'll be able to share this talk with folks,
48:14but also to share here's the paper here.
48:16Here are the data which suggests in
48:20essence that we're doing it wrong,
48:23that we're doing it wrong.
48:25And so a question I have for for
48:27any and all three of you is why
48:29do you suppose we do this wrong?
48:32Why do you suppose we do this differently?
48:34Than the way we do for adults
48:37with colon cancer for example.
48:39I'm convinced and and and and I've had
48:41these conversations over the years.
48:43I'm convinced that we've got
48:44the wrong framework here.
48:46But I'm interested to know what what you
48:483 think why why are we doing it this way?
48:50Why are we getting it wrong.
48:51I think I'm convinced about
48:53how we're getting it wrong.
48:54I'm curious to know what you
48:55think about why
48:55we're getting it wrong. I think we'll have
48:57different versions of
48:58why. But I'll have
48:59to follow up visit eager follow up
49:01physician speak. So are
49:02the parents. I thought. I
49:03thought about this a lot and I think not to
49:07stoke everybody's ego necessarily.
49:09Fair. But I feel like the people
49:11that are doing the follow-up or
49:12that are deciding what's important,
49:14you're not, you're looking at outcomes
49:16through your own lens of experience.
49:19So if you're a PhD or you're a doctor,
49:22you, no offense, but you don't
49:25really represent the general public.
49:27So you're more, you know,
49:28you're intelligent, you're educated,
49:29you make a lot of money,
49:32you know you're you have a lot of resources.
49:35You've potentially different
49:36expectations I would say then perhaps.
49:39Everybody else does and I want to. So again,
49:42like the idea of having a child that has.
49:46You know, a low IQ or something,
49:48I'm guessing again.
49:49Or those types of things.
49:50Or that is less mobile.
49:52I don't know, I feel like because.
49:54I I sort of feel it's a little bit
49:56bad that the people that are making
49:58these decisions might not have the same
50:00desires or or or wants for kids or
50:02more might be more critical potentially
50:04about what they want those outcomes to be.
50:07And I think that that's part of
50:09it because again when you talk
50:11to sort of a range of parents.
50:13Things like again and DI are not,
50:15you know, they're not that important.
50:17Things like they are important,
50:19but they're not as important
50:21as one might think.
50:22So again, I find it really interesting
50:24that there's this real focus on,
50:26again, development IQ.
50:28And again,
50:29from my just from the reading that I've done,
50:31there's a huge amount of research into
50:34school outcomes, neuro, you know,
50:36like I said, how kids do in school,
50:39how kids do in math, things like that.
50:41And we know that that's important.
50:43But I think again,
50:43if you ask parents,
50:44it's probably at the bottom of
50:45their list of what they consider
50:47to be really important.
50:48They want to know that their kids are happy.
50:50They want their kids again to be
50:51functional members of society.
50:53They want them to just go to regular school.
50:55They want them to be able to have a job.
50:56It doesn't necessarily matter to
50:58a lot of parents if you know,
51:00their kids end up being doctors.
51:02Does that kind of make sense?
51:03So I think that's part of it.
51:04I think it's just like I said that the
51:06people that are choosing these are
51:08are choosing these outcomes sort of
51:09based on their own lens and not again,
51:11what most, you know, if you took 100 parents,
51:13what they would necessarily.
51:15Considered to be as important to them.
51:17So.
51:17And I also feel like there's a
51:19difference because children are
51:21sort of unfinished canvases, right?
51:22Like with adults and colon cancer,
51:25you know,
51:25we know that person has had a chance
51:27to grow and develop a personality.
51:28And with kids, there's more pressure,
51:30I guess,
51:31again on what these kids are going
51:33to be and to become.
51:34And so I feel like there's, you know,
51:36adults or adults and kids or kids.
51:38So there's there's more.
51:39Yeah. It's just a different,
51:40a different outlook. I think so, yeah.
51:44And your second point, Rebecca,
51:46I think was was really important the fact
51:49that the that the newborns in particularly
51:51are the unfinished cannabis as you put it,
51:53compared to adults and even to some
51:55extent compared to older children,
51:56because this is not an Annie
51:58and I have worked on together.
52:00Far exceeded my own in this area.
52:01But but the whole our attitudes toward
52:04premature babies in particular and full
52:06term babies also is different even
52:08than our attitudes toward other children.
52:10And so the idea that that the
52:13physician has a different perspective
52:15than the parents or the patient,
52:18I think that makes sense.
52:19Which is why it's so valuable
52:21to hear from you, Miss Pierce,
52:23and to hear from you Doctor Javier,
52:25who I know that that it's not a secret
52:28that Annie has been in both situations.
52:30And you, you showed very briefly your book.
52:34Breathe, baby, breathe,
52:35which is a wonderful look from the
52:37inside by a physician who is also
52:38the mother of a very preterm baby.
52:40And so we're
52:41moving furniture around to be able to answer
52:45the question. I think there's also that we've
52:48discussed this and wrote about
52:50it like saving versus creating.
52:52I think as neonatologist,
52:54we feel we create disability,
52:56whereas others feel they save patients
52:59and many of these very fragile babies,
53:03we can take life and death.
53:04Decisions and stop the
53:06respirator, for example after a great 4
53:08hemorrhage. So we feel we
53:11need to prepare parents.
53:12For the future, in a grim way,
53:14we don't do elsewhere.
53:16So if you speak to any critical
53:18care physician who describes
53:212 parents for example,
53:22if something horrendous a burnt victim,
53:2570% burns, what?
53:26What the future will look
53:29like or the PICC state,
53:31they really don't do what we
53:32try to do with decision aids,
53:34showing how much pain they have
53:36and then how much withdrawal
53:38and then how much depression.
53:41And they they don't do that.
53:43They they try to be encouraging
53:45the same thing in cancer and we
53:47arrive with our list of all the
53:49bad things that can happen to kids
53:51in a very structured manner as
53:54recommended by the AAP to approach
53:56parent with the disaster tree.
53:58So it's.
53:59I think there's a lot about newborns,
54:03optional newborns,
54:04replaceable newborns for some that
54:06you can just make another one.
54:08I'm I'm being challenging on purpose.
54:13And this
54:14window of opportunity, as well as
54:17the feeling that we create
54:19disabled kids and we don't want
54:20parents to come back and say, oh,
54:22I regret that you saved my child.
54:25And I don't know if my has
54:28some epidemiology comments.
54:29I think it's very practical to lump
54:31things together to find a P value.
54:34So if you lump death or whatever and
54:36then a whole lot of adverse outcomes,
54:38then you may find a P value somewhere.
54:43But that's not the way they
54:44do it in cancer outcome.
54:49And I also think like one of the problem is.
54:54Well, I'm a pediatrician.
54:55I don't work in the neonatal
54:56in the neonatal units.
54:57I guess like I don't have to make
54:59those life and death decision.
55:00And I think it's probably important
55:02to say well you know you're the
55:05child may have Sir Bob Palsy but
55:07then for parents serval palsy
55:09is a very vague term and we'll
55:11we'll think about the child who's
55:13wheelchair bound and cannot talk.
55:15It cannot do anything.
55:17Whereas actually I, you know,
55:19like majority of kids will end
55:21up walking and they can have.
55:23A normal life despite their disability.
55:26So for example let's say a child has cancer.
55:29You know I I see the hematologist he
55:31will say well you know the child may
55:33have you know is at higher risk of
55:36infection but we have antibiotics you know,
55:38to get to treat your child.
55:40So you know like and you're intelligent.
55:41You say well your child is at risk of
55:43several palsy but you know this sounds
55:45like the end of the world but you
55:48know the talking have cerebral palsy.
55:49But we will make sure that we
55:51identify this early so we can provide.
55:53Early intervention.
55:54So despite the cerebral palsy,
55:56your child can be functional as other
55:58kids or we'll do our best to make your
56:01child function and be happy and play.
56:03So,
56:03and maybe this is also because
56:05there's a lack of knowledge of what
56:08neurodevelopmental impairment actually means,
56:10even like from the people who
56:13are doing the the counseling.
56:15So I guess I, I think it's still,
56:17you know, don't don't get us wrong.
56:19I mean development was still
56:20something that parents felt was
56:22important but what they said is,
56:23you know, you should.
56:25Also emphasize what the
56:26child will be able to do,
56:27not just the negative aspects.
56:31Thank you. Thank you, Maya.
56:33I'm going to get to some of
56:34the questions and comments.
56:36First things first we heard from
56:38Doctor Thomas Duffy, who is.
56:41Of one of the.
56:43One of the looming very large figures
56:45in medicine here at Yale and far
56:48beyond Yale as well, Doctor Duffy,
56:50is the the professor's professor,
56:52and he says an excellent session,
56:54remarkably well articulated and structured.
56:57A pleasure to hear and learn from.
57:00Next, was there any analysis of
57:03themes across different socioeconomic
57:05strata and or racial ethnic groups?
57:09Yes, we actually did some, uh, analysis.
57:12Um. There were some differences,
57:15with actually parents of lower
57:20socioeconomic status being less concerned.
57:24They were more optimistic in
57:27how they perceive their child,
57:30and they had less regrets to less regrets.
57:33But nothing for racial,
57:35nothing for racial.
57:38Thank you. The next from one of our NICU
57:43nurses, an outstanding presentation.
57:45Your marine is just stunning and I and
57:48I second that what a beautiful kid I
57:50am a NICU nurse for 34 years and just
57:52have recently begun to spend a portion
57:54of my discharge prep to be blatantly
57:57describing the impact of all the post
57:59discharge appointments, Brad Clinic,
58:01pulmonary cardiology, birth to three,
58:03healthy beauty appointments,
58:04sick appointments, but also how the
58:07parents can plan and make those days.
58:09Easier on their family,
58:10like planning takeout dinners or
58:12having leftovers those nights,
58:14packing a lunch, etcetera.
58:16Packing a lunch for the trip.
58:19So some some practical advice and
58:21suggestions. It comes with time.
58:23And experience.
58:26And this is from a colleague out to
58:29one of the when we asked parents,
58:31we didn't put all of the quotes on,
58:32they actually gave recommendations
58:34to new families such as that.
58:38To take, you know,
58:39some very very practical recommendations.
58:42So this will be in the articles too
58:45like what can you actually tell
58:47families in the NICU and and using
58:50our data to speak to families for the
58:52nurses out there is very interesting.
58:54Such as I now use instead of
58:57saying you should go rest.
58:59I tell parents we've asked parents like you,
59:02all the parents that came back during a year,
59:04what they regret the most and it's
59:07not taking care of themselves.
59:08And they told us if we'd known
59:10we would have rested more,
59:12we would have taken time for a couple,
59:14we would have done this, this and that.
59:16So parents don't feel, oh,
59:18they're kicking me out,
59:19I'm bothering them.
59:20They don't think I'm a good parent.
59:22They actually say, oh,
59:23this is advice from other parents.
59:25All the other parents who came through
59:27the same unit say this is their tough
59:29regret that they were exhausted.
59:31So even speaking to families now,
59:34I use that like many parents
59:36tell us that many parents.
59:39It has a lot more impact than
59:40Annie tells you to go rest at
59:42home because it's important.
59:44So,
59:44and I'm sure the nurse who was
59:46there for 34 years knows a lot
59:49more about what is useful for
59:51parents in the long run in the NICU
59:54then than us as neonatologist.
59:57But I think it's helpful for us because you
60:00did mention in the talk a bit about guilt.
01:00:02And so I think that what might come
01:00:04along with that sense of that misplaced
01:00:06sense of guilt that some parents,
01:00:08particularly some mothers,
01:00:09might feel through all this stuff is
01:00:12therefore a sense of a need to continually
01:00:14self sacrifice and when in the long
01:00:16run that really doesn't help anybody.
01:00:19And I I think that that that we do
01:00:21well to remember to tell them that
01:00:23I I've often told parents that,
01:00:24you know, next to her own health,
01:00:26your child's greatest asset in life.
01:00:28Is your health and your marriage so,
01:00:30so make sure you're paying attention
01:00:32to those things because it's
01:00:34going to mean a lot to your kids.
01:00:35But so I think that so many,
01:00:37so many parents feel that at
01:00:39this point there's almost,
01:00:40it's almost sacramental that I I don't sleep
01:00:43and that I don't do anything for myself.
01:00:46And of course we can't.
01:00:47We would never possibly consider
01:00:49going out for dinner while
01:00:50our child in the newborn ICU.
01:00:52Well, I get it.
01:00:53If you had a kid in the ICU for three days,
01:00:55you know, if your kid was in a car accident,
01:00:57that would be a little surprising
01:00:58if you wanted to go out to dinner.
01:00:59But.
01:00:59You're talking about months and
01:01:00months of a long distance run here
01:01:02so you know taking some time for
01:01:04yourselves and and giving the and Annie
01:01:06that's a really that's a really nice
01:01:08insight that for us to tell parents
01:01:09by the way it's not my opinion this
01:01:11is what we hear from parents that
01:01:12they wish they had done that they
01:01:14would value that's very helpful.
01:01:16This from a colleague in the Midwest and
01:01:18says comparatively few neonatologists do
01:01:20long term follow-up of NICU graduates.
01:01:22True,
01:01:23most of us aren't directly involved in NICU.
01:01:25Excuse me and Nick,
01:01:26you follow up.
01:01:27If this is playing a significant
01:01:28role in the way they view things,
01:01:30why is this so undervalued by the
01:01:32specialty and what does this mean for
01:01:35the way neonatologists are trained
01:01:36and what might be required changes
01:01:39for those choosing this specialty?
01:01:42Well, we all agree. So I think like
01:01:47when you were a neonatologist,
01:01:49I guess you feed with adrenaline and
01:01:52acute stuff that goes very quickly and
01:01:55you know in a neonatal follow clinic
01:01:57we see one patient per 45 minutes.
01:02:00It's very slow pace.
01:02:02It's you know there's not much action.
01:02:04It's a lot of well,
01:02:06it's important when we do,
01:02:08but maybe this is what why people are
01:02:10not so interested because it's it's a
01:02:13slow pace and I think people feel like.
01:02:16Ohh, I'm going to give a diagnosis of autism.
01:02:18This is the end of the world.
01:02:20But actually there is something
01:02:21that can be done and maybe this is
01:02:24a part of training is you know.
01:02:26Maybe like developmental problems are
01:02:29seen like something which is awful.
01:02:32But actually it's not.
01:02:34It's just being different.
01:02:35And I guess like once you're
01:02:36trained to see that,
01:02:37you know,
01:02:38difference doesn't mean a bad thing.
01:02:40And this,
01:02:41the way we accompany families and children
01:02:43is really meaningful and makes you know it.
01:02:46It just makes you more humble.
01:02:48But there is something to be done.
01:02:49There are interventions,
01:02:51but maybe I just don't know about it.
01:02:54So they feel a little bit
01:02:56uncomfortable announcing a diagnosis,
01:02:58thinking that this is the end of the world,
01:03:00but it's actually not.
01:03:01It's part of the journey.
01:03:03And
01:03:03I think to be honest,
01:03:04there should be a a proportion of
01:03:07neonatologists doing the follow-up clinic.
01:03:09In fact, I was never encouraged to do
01:03:11the follow up clinic and I thought as a
01:03:14resident I didn't even have rotations.
01:03:16It's changed now.
01:03:17I didn't have rotations and I didn't
01:03:19even know I could do follow up
01:03:21as a neonatologist because those
01:03:23who were supervising me didn't do
01:03:25follow up and I didn't have access
01:03:28to the follow-up clinic.
01:03:29But perhaps the health unit is
01:03:311 where a third or half?
01:03:33And we need to know of neonatologists
01:03:36actually do the follow-up clinic to
01:03:39feedback and and you know integrate
01:03:41how outcomes are viewed.
01:03:43And I think it's
01:03:44important as well for students,
01:03:47as Annie said, to have to do this.
01:03:49It's sort of links them looking at
01:03:51the the one of the last questions or
01:03:53the next questions, if it's important.
01:03:54I think for doctors who see their
01:03:56babies when they're at their sickest
01:03:58and their smallest, I mean you see,
01:03:59you see our kids when they're at their worst,
01:04:01basically in the NICU.
01:04:03It's important I think,
01:04:04to see them years later and to recognize
01:04:06that even children who aren't perfect,
01:04:08you might have you know, developmental
01:04:11disabilities or whatever that they're.
01:04:14Their family's lives aren't tragic
01:04:15like their lives are not tragic.
01:04:17Their families lives aren't
01:04:18tragic and people adjust.
01:04:20And again, it's not saying that these are
01:04:22necessarily outcomes that we strive for,
01:04:24obviously not.
01:04:25But even again an outcome that
01:04:27would be considered, you know,
01:04:29very negative outcome in outcome research
01:04:31is not viewed the necessarily that way
01:04:34by families or by the kids themselves.
01:04:37So I think it's really important
01:04:38to see that that you know,
01:04:39even a kid again is my said that
01:04:41has diagnosed with severe cerebral
01:04:43palsy many of these kids.
01:04:44Live relatively normal lives.
01:04:47You know, kids that might have blindness or,
01:04:50you know, developmental delays,
01:04:51they live happy lives.
01:04:52Their parents are happy.
01:04:53This isn't something that becomes a tragedy
01:04:56for those children and their families.
01:04:57And I think that that's something very,
01:04:59very important.
01:04:59They're living normal
01:05:00lives like everybody else.
01:05:02It's just these are their kids.
01:05:03And I think it's really important to
01:05:05see that for neonatologists and people
01:05:08training to be neonatologists as well.
01:05:11And we see that but seeing is believing
01:05:15and and perhaps nurses too should or we
01:05:18tell parents now at follow-up to come
01:05:21like they tell go upstairs to say hi
01:05:24and when you actually see the kids and
01:05:27I think it's like the 22 weekers when
01:05:29you see a 22 weaker surviving a baby
01:05:32born at 22 weeks gestation surviving
01:05:34you believe they can survive as a nurse
01:05:37but you don't believe it if you've
01:05:39seen 3 deaths so there there's if you.
01:05:41You see the smiles and you see the happiness.
01:05:44You believe it.
01:05:45It's very hard to just read
01:05:46it and believe it.
01:05:48I think there's an emotional
01:05:49component that's important.
01:05:52Yeah, that makes sense. Yeah.
01:05:53And I wonder if, you know,
01:05:55I mean I recently got a text
01:05:57from a nursing colleague,
01:05:59a picture of a kid running in
01:06:00his first cross country race.
01:06:02And it started with,
01:06:03you might remember there was this
01:06:04child born at 25 weeks who had a
01:06:06pulmonary hemorrhage and and you know,
01:06:08and it was a,
01:06:09it was a lovely Texan picture to receive,
01:06:11but I otherwise would not
01:06:12have encountered that kid.
01:06:13I think the pediatricians,
01:06:14I noticed on the call,
01:06:15we have some of that,
01:06:15some of some wonderful general
01:06:17pediatricians on the call tonight,
01:06:20Owen and others who who.
01:06:23Who saw these kids longitudinally
01:06:24and they would often,
01:06:25you know when when when I was spend
01:06:27time in a smaller Community Hospital,
01:06:29I would see the general pediatricians
01:06:30more often I would say you know
01:06:31I saw this kid or I saw that
01:06:33kidder here's what's going on.
01:06:34We missed that perspective.
01:06:36But I wonder if there isn't some
01:06:38some happy compromise which is
01:06:40if every name theologist can't
01:06:41spend a substantial amount of
01:06:43time in the follow-up clinic.
01:06:44And by the way,
01:06:45I know this is our speakers know
01:06:46this but for the audience that
01:06:48all of our units ologists who
01:06:49are training now do in fact spend
01:06:50time in the follow-up clinic.
01:06:52But I didn't and I guess Andy didn't either.
01:06:54And so, so there was,
01:06:55you know,
01:06:55until relatively recently that
01:06:57wasn't a standard consistent
01:06:58part of the anthology training,
01:07:00but it is now thanks to
01:07:02our educational leaders.
01:07:04But I wonder if there isn't something
01:07:07for those of us who aren't doing that,
01:07:08who aren't working a lot in the
01:07:10clinic to nevertheless periodically
01:07:11get some exposure to this to
01:07:13take advantage of what and what
01:07:15you described as the seeing is
01:07:16believing phenomena to actually
01:07:17see some of these kids we used to,
01:07:20we have it in some time.
01:07:21We have both in New Haven.
01:07:23And in London had the wonderful uh
01:07:24reunions where these kids would
01:07:26come back with their families would
01:07:28be outside with a big fair with
01:07:29games and and food and such and
01:07:31and and the staff would come and
01:07:32the families and kids would come
01:07:34and you see these kids afterwards.
01:07:35And well yeah these are these
01:07:37are little kids,
01:07:38you know not just tiny babies.
01:07:40And then as time goes on of
01:07:42course those little kids are are
01:07:44bigger kids than adults so that
01:07:45we're missing that perspective.
01:07:47You're quite right this from
01:07:49an obstetrics colleague.
01:07:51I think that as clinicians we
01:07:52worry about giving patients.
01:07:53False and unrealistic hopes and try
01:07:55to be as objective as possible in
01:07:57presenting the data to families.
01:07:59We worry about doing too much in
01:08:01situations where the outcomes
01:08:03are likely to be poor.
01:08:04But let me just add something to
01:08:05that to that important question and
01:08:06see what you guys have to say about it.
01:08:08But and you made the point at the very end,
01:08:10Danny, and and it's clear
01:08:12from your information that in
01:08:14our effort to be objective,
01:08:15we're kind of measuring the wrong stuff.
01:08:17And in fact we are,
01:08:19I think it's reasonable to say,
01:08:21overly pessimistic. For example,
01:08:24we often quote the follow-up data at
01:08:2618 to 26 months or 18 to 22 months,
01:08:29when repeatedly it's been shown that those
01:08:31data themselves are overly pessimistic.
01:08:33When you look at those same kids
01:08:34when they're six or eight years old,
01:08:36they're actually many of them
01:08:37doing better than would have
01:08:39been predicted at 20 months.
01:08:40So we're trying to be objective,
01:08:41Francis, right?
01:08:42And that might be the explanation.
01:08:44But in fact, it seems to me,
01:08:46from what you've said that your work
01:08:48confirms that we are overly pessimistic.
01:08:50Is that a fair assessment of your work?
01:08:53Ohh yeah. No, but we were shown to
01:08:57be overly pessimistic.
01:08:59But for the obstetrician,
01:09:01they were shown to be even more
01:09:03pessimistic than bad in ICU doctors.
01:09:05So that it's I think.
01:09:08To be honest, they also the
01:09:09obstetrician has to care for the mother,
01:09:12for the sick mother,
01:09:13for the mom who has severe preeclampsia,
01:09:15her health is at risk.
01:09:17How much can you prolong pregnancy,
01:09:20cesarean section,
01:09:22decisions and thinking?
01:09:25There's also we didn't speak about mortality,
01:09:27but Caesarean section decisions when,
01:09:29for example,
01:09:30have the kids die afterwards and how do you
01:09:33feel about doing interventions like this?
01:09:36So it gets, I think, even more.
01:09:37Complicated where in ethics we call
01:09:40it the fetal maternal conflict.
01:09:42I don't think it's a conflict
01:09:43because one does.
01:09:44You know the fetus can't be
01:09:46there if their moms not there.
01:09:48But I I think obstetrician has have more
01:09:53burden in in the decisions they have to take.
01:09:56We also have some burden after that.
01:09:58We don't want parents to come
01:09:59back and have regrets of saying
01:10:01we shouldn't have done this.
01:10:03And we hear like sometimes doctors saying,
01:10:06oh,
01:10:07a parent came back and told us that.
01:10:09Interestingly,
01:10:09in a year with 98% of parents who
01:10:13came to follow up who answered,
01:10:15none of them had regrets about
01:10:17life and death decisions.
01:10:18So I think,
01:10:20I think it's really mainly describing
01:10:22function and perhaps the the best way
01:10:24to do a parallel in the obstetrics
01:10:26literature is speaking about Down syndrome.
01:10:30And there's very good Kathy sheets,
01:10:33very,
01:10:34very good research done
01:10:36also by Doctor Scott Co.
01:10:39How to speak and they actually 10
01:10:41years ago we're saying give balanced
01:10:43information what the child can do,
01:10:45but where the child is limited,
01:10:47give information about the family,
01:10:49give information.
01:10:50And there there is this data and
01:10:53perhaps we'll start giving information
01:10:56about function and what the families
01:10:59look like and the positive and
01:11:01negative in a balanced fashion as
01:11:03opposed to a list of diagnosis.
01:11:06Oh, I was just going to say that I
01:11:08just want to point out as well the,
01:11:10the sort of the statement the
01:11:11outcomes are likely to be poor.
01:11:12I think that this, the research we
01:11:14presented shows that these outcomes,
01:11:16poor outcomes are subjective, right.
01:11:19So again, what a clinician might
01:11:20consider to be a poor outcome or
01:11:22is not necessarily what parents
01:11:23would consider to be a poor outcome.
01:11:25So I think it's important again to
01:11:26remember that that that you're looking,
01:11:28you know, as an obstetrician,
01:11:29I guess you're looking at outcomes
01:11:30through your own lens or through
01:11:32the lens of the research.
01:11:33But again, this doesn't necessarily
01:11:35reflect what parents.
01:11:36Fuel or poor outcomes.
01:11:38So that's an important consideration.
01:11:41Thank you Rebecca that that that is
01:11:43a really important point and so and
01:11:45I I think I've looked this from your
01:11:47talk as well that that that this is
01:11:48language that I may have used and I
01:11:50think we all use which to say that
01:11:52that here's the chances of a severe
01:11:54disability and just that framing of it,
01:11:56of that phrasing of it is not
01:11:58particularly helpful because what I
01:11:59think is severe may be different than
01:12:00what the mother thinks is severe.
01:12:02And so rather than that say here is
01:12:04some likely outcomes of this and here's
01:12:06what can be done about them rather than
01:12:09just kind of conflating all these different.
01:12:11Comes under the category
01:12:12of severe disability.
01:12:15Yeah. Just to be assured that a person,
01:12:18and it's been more than, you know,
01:12:20it's almost 15 years I've
01:12:22been doing unit of follow-up.
01:12:23I often hear the new Unitologist
01:12:25said that my child could not do this
01:12:28and look at what he's able to do.
01:12:30My, the neonatologist said that he
01:12:32was going to be like a vegetable but
01:12:34look like he can sing, he can dance.
01:12:36But I've never heard a neonatologist never
01:12:39told me that my child would have this.
01:12:41I've never heard that in 15 years, so.
01:12:43It's very, you know, it's experience.
01:12:46It's not evidence based,
01:12:48but it's anecdotal, but it's anecdotal.
01:12:52And it's it's the anecdotal experience
01:12:54of of of a very experienced 15
01:12:56years of as a problem of physician.
01:12:58So it's not nothing my and I appreciate
01:13:02the the observation because it is true.
01:13:05We live in we we on the intensive care
01:13:07side live in fear that we are going
01:13:09to have misled parents and send them
01:13:11home with a child who was profoundly
01:13:13disabled and we never warned them.
01:13:16But it it seems to me from not just what
01:13:18I'm hearing you say but from the data
01:13:20you presented that while that may be a
01:13:21concern in fact we're far more likely.
01:13:23To be overly pessimistic and to
01:13:25mislead them about what capabilities
01:13:26our child is likely to have.
01:13:31Next question, comment one slide showed.
01:13:34100 parents who rated their child as
01:13:36having mild to moderate disability,
01:13:38but testing showed no disability.
01:13:40Is there a different subset of parents
01:13:42who see their child as more affected,
01:13:44perhaps in grand sense of
01:13:45vulnerability in their child?
01:13:48And we had there's quotes that
01:13:50go with that and examples are my
01:13:55child is hospitalized every month.
01:13:58It's held to feed him.
01:14:01Or suppers are no longer nice family
01:14:04suppers because there's no more feeding it.
01:14:06It's just trying to bring nutrition.
01:14:08He's not gaining weight.
01:14:10We're constantly at the hospital.
01:14:12But yet because my child is not disabled,
01:14:15I don't have services I not
01:14:18judged as being disabled.
01:14:19So there's a lot of things
01:14:21that we see as mild,
01:14:23like behavior is probably the
01:14:25worst that we see as mild.
01:14:27That is not mild for families,
01:14:29a child who's violent to others.
01:14:31Who goes whole to school always has
01:14:34problems with other it's violent to others,
01:14:37is kicked out of school repeatedly,
01:14:39is seen also be seen as the bad parents.
01:14:43There's a quote I remember from a dad
01:14:45is that nobody's nice to us because our
01:14:47child kicks everybody and it's not nice,
01:14:50but he was actually classified as normal.
01:14:53But this dad was devastated.
01:14:56So I think there's a lot of spheres
01:14:58like this where we're really,
01:15:00we can't see that at the MRI.
01:15:02We can't see it on the ultrasound.
01:15:04We can only hear about it at follow-up.
01:15:06We can't predict it,
01:15:08but we don't investigate this and
01:15:11it seems these parents don't have
01:15:13enough help because severe feeding
01:15:15difficulties are not put in,
01:15:17in significant disability.
01:15:19So some parents also,
01:15:22you're right,
01:15:23a minority,
01:15:23speak about like their child has problems,
01:15:26but we don't see them because
01:15:28we look at the Bailey and the
01:15:30deafness and the severe things
01:15:31that we think are severe.
01:15:35Thank you.
01:15:38One of my practitioner,
01:15:39friends of many years and colleagues
01:15:41says that we need to realize the
01:15:43value of the child to the family.
01:15:44We will care for them no matter
01:15:47what when we realize that,
01:15:49when we realize the value
01:15:50of the child to the family.
01:15:52Another comment question.
01:15:53I applaud your work.
01:15:55I think a balanced and hopeful approach
01:15:57is missing in medicine, however.
01:15:58I feel that providing hope or
01:16:00presenting a balanced view can be
01:16:02viewed negatively by other physicians,
01:16:04nurses, etcetera.
01:16:05Do you think there's a connection
01:16:07with physician counseling
01:16:09and physician burnout?
01:16:10Are we too jaded?
01:16:13Many questions. Well,
01:16:15there's the moral distress literature that
01:16:19shows us who is more morally distressed.
01:16:22So the least experience you have the in
01:16:25neonatology if you look longitudinally
01:16:27over a moral distress and burnout.
01:16:30And this is my she's not a
01:16:33PhD student anymore.
01:16:34Trisha Apprentice, who was my PhD student,
01:16:36was a wonderful clinician in Australia,
01:16:39has looked at how people are morally
01:16:41distressed clinician in the NICU.
01:16:43Over a year,
01:16:44and they are nurses are often distressed
01:16:48when doctors are not distressed,
01:16:51there is more distress when not all
01:16:53the team is distressed together.
01:16:55There's more distress when we
01:16:57think the child will die and the
01:17:00parents don't want to reorient care.
01:17:02And usually everybody agrees
01:17:05together in these conditions.
01:17:07And the least experience you
01:17:08have the more distressed you are.
01:17:10I said that and interestingly the
01:17:13distressed actually disappears when
01:17:15the kid is no longer ventilated.
01:17:17So why don't we can't stop
01:17:20life sustaining interventions.
01:17:22The distress seems to go away.
01:17:23So when a child has bilateral
01:17:25Grade 4 seizing,
01:17:26not doing well at all and has
01:17:28neck and short gut and let's put a
01:17:30very bad scenario and we're trying
01:17:32to engage with parents to see do
01:17:34we want to reorient care,
01:17:36he'll stay long, a long time.
01:17:37May be lifelong TPN and parents
01:17:40refuse and the care continues.
01:17:42When this child is now only on low
01:17:46flow oxygen and TPN and goes home,
01:17:48actually very,
01:17:49very few people are morally distressed.
01:17:53So I'm not sure it's how we paint
01:17:57the outcomes that that would make
01:18:00everybody morally distressed.
01:18:02Certainly other physicians don't
01:18:04necessarily look at preemies
01:18:06in a very kind way.
01:18:08So in because the same thing,
01:18:10they don't go to neonatal follow up,
01:18:12they don't see our kids when
01:18:14they're just eating lunch at school.
01:18:16When they see our kids is because
01:18:19they're hospitalized with RSV
01:18:21or they see their kids with
01:18:23quadriparesis or the residents too.
01:18:25They only see the the, the, you know,
01:18:28the kids who need to be rehospitalized
01:18:30who at that point are not smiling.
01:18:32So they think our kids don't smile
01:18:33because when they're rehospitalized.
01:18:34But I don't smile when I
01:18:36read I'm rehospitalized, so.
01:18:38It's also the people,
01:18:40and it's an NICU graduate and they're like,
01:18:42yeah,
01:18:43there's an NICU graduate and RPI.
01:18:45They don't say there's a hemon graduate,
01:18:47like dying on the wards and the the kind
01:18:50of bad Rep we get in the hospital too.
01:18:53So you're right that maybe if
01:18:54we start being more balanced and
01:18:57positive that some doctors will say,
01:18:59Oh my God,
01:18:59you know,
01:19:00these neonatologists are totally delusional.
01:19:02But then maybe we can send us the
01:19:04papers and they can read them.
01:19:07Yeah, yeah. Your. Your. Your.
01:19:12Uh, there was a sailor at sea,
01:19:14captain from a couple 100 years ago who
01:19:16famously said my cannon will speak for me.
01:19:19So perhaps the team from Montreal
01:19:20says our data will speak for us
01:19:22because you you don't present us
01:19:24just with your opinions or outlooks.
01:19:26You also present us with some compelling
01:19:28data on which I think we need to share
01:19:30with our non Una Township colleague.
01:19:32A comment, more of a comment,
01:19:34I think the real follow-up clinic.
01:19:37Is the medical home where us general
01:19:40peace follow those NICU graduates
01:19:42for 20 years and see them on that
01:19:45sometimes tumultuous journeys.
01:19:48That's the follow up clinic is the is the.
01:19:51Is the general pediatric uh the
01:19:53general of the medical home?
01:19:54It's an interesting observation from Cliff.
01:19:57Um. And uh, this from one of the associates,
01:20:01directors of our program.
01:20:02We asked,
01:20:03I wonder if some of physicians
01:20:05pessimism about the outcomes of very
01:20:07premature children has to do with
01:20:08their concern about the burdens,
01:20:10economic and otherwise,
01:20:11they might be imposing on society
01:20:14by keeping the child alive,
01:20:16creating a burden rather than saving a life.
01:20:19I don't know if my friend Jack had
01:20:20actually read the paper that you
01:20:22and I wrote together many years
01:20:23ago about saving versus creating,
01:20:25but you also alluded to it in your talk.
01:20:27Do you think that it's possible that?
01:20:29Some of the positions pessimism
01:20:30is related to their concern about
01:20:32the the burdens that they might
01:20:34be imposing on society.
01:20:37But I don't think this is evidence
01:20:39based because the work from from Doctor
01:20:43Spencer has shown that actually it
01:20:45is a very good for society to spend
01:20:49money in neonatal care just because
01:20:52of you know all the the the long
01:20:55life that those babies can have and.
01:20:58Once again, like we have this impression
01:21:02that significant disability is something
01:21:04very prevalent among very premature babies,
01:21:07but it's actually not so high.
01:21:10It doesn't mean that you have
01:21:11several palsy that you cannot
01:21:12contribute to society and have a job.
01:21:14It doesn't mean because you have autism
01:21:17that you're not able to have a job so.
01:21:19So actually I think it's a misconception
01:21:22that children or even individual with
01:21:25disabilities are not valuable to society.
01:21:28So I think that the,
01:21:30the big mistake here is to invest
01:21:32a lot in neonatology and not in
01:21:34follow-up care and rehabilitation care.
01:21:36Because what I see a lot is that families,
01:21:38they want to help their children,
01:21:40but there's no speech and
01:21:41language pathologist,
01:21:42there's no physical therapist.
01:21:43Maybe this is a Canadian problem,
01:21:46problem with our universal healthcare.
01:21:48But I think that, you know,
01:21:50following this family,
01:21:51helping out them through
01:21:53their journey being there,
01:21:55this is such an important piece to
01:21:56make sure that you know the kids.
01:21:58Can do whatever they want in their life
01:22:00and they can really contribute to society.
01:22:02I think it's a misconception that we think
01:22:05that disability equals being a burden.
01:22:08And I'm sorry go ahead the
01:22:09and the economy there.
01:22:10There are there are economic analysis.
01:22:13There is zupancic.
01:22:14There's Bill Meadow did some and Edward Bell.
01:22:18And in fact it's the cheapest one of
01:22:20the cheapest endeavor in medicine
01:22:22is if you look at qualities you
01:22:24look at how long then the kids can
01:22:26work and support us when we're old
01:22:29and pay the taxes for my health care.
01:22:31So no but it's it is for
01:22:33real if you really do an
01:22:36economic analysis mammograms.
01:22:38Are really not very good compared to
01:22:41treating extremely extreme preemies.
01:22:42Automatic defibrillator devices
01:22:44that we have everywhere and we keep
01:22:47functioning are an apocalypse because
01:22:49most of them then are disabled.
01:22:51They send the hospital or they die and
01:22:54they don't have very good outcomes
01:22:56and and then they're disabled and
01:22:58do not make money because it's
01:23:00more likely to be an older people.
01:23:02So all these economic analysis use
01:23:05real economic analysis of the worth.
01:23:08Of the person that's bringing back
01:23:10money later and they all point
01:23:12towards actually neonatology being
01:23:14a bargain in terms of economic
01:23:16analysis compared to other things.
01:23:18Not you know not compared to you know
01:23:21minor minor aesthetic surgery but
01:23:24I mean compared to other endeavors
01:23:26in in the Quaternary Care center.
01:23:29I'm just reading Doctor.
01:23:30Doctor Katz. Dr Hughes.
01:23:31Sorry we're not we're not
01:23:32trying to jump on you. I know
01:23:33he's he said I did
01:23:35read your paper.
01:23:36I'm just trying to but
01:23:37I think this. I think
01:23:38that I think you make a good point
01:23:39and I think that this brings up
01:23:41again the fact that the difference,
01:23:43the difference that that clinicians
01:23:45have in viewing babies versus adults
01:23:47like again it's very hard to imagine a
01:23:50premature baby as a functioning you know,
01:23:52teenager or a 25 year old.
01:23:54And I think there's a lot of statistics,
01:23:57I don't know exactly what they are,
01:23:58but about how, you know the last
01:23:59year of people's lives is the is
01:24:01that when we spend the most money
01:24:03on healthcare for those people
01:24:06even though it's kind of useless.
01:24:08And so because they're
01:24:10and so I find it interesting
01:24:11that we're, you know,
01:24:12we're questioning spirit,
01:24:13you know, and sorry Doctor Who,
01:24:14I know you're not saying this,
01:24:15but I know you know that some people
01:24:17might question the expenditure
01:24:18for these babies that as Annie
01:24:20said are going to become like
01:24:21most of the vast majority of them
01:24:23functioning members of society.
01:24:25But we don't necessarily question
01:24:26again spending you know tons of
01:24:28money on medical treatment for
01:24:29like a 94 year old for example.
01:24:31So again it's this difference I
01:24:33think in how we view babies versus
01:24:35how we view full grown adults.
01:24:37So anyway. Yeah,
01:24:39yeah. No, good point.
01:24:40And Jack and by the way he puts
01:24:42here and I was going to say that
01:24:43Jack if you didn't that was clear,
01:24:45he was trying to think about
01:24:47the explanation for physicians
01:24:48view not to justify the belief
01:24:50that shooting the messenger here.
01:24:53He has a far more knowledgeable and
01:24:55sophisticated view of the economics
01:24:56of medicine than most of us.
01:24:57This is one of the things that Jack
01:24:59teaches here at Yale, and he gets it.
01:25:01But trying to understand why people
01:25:03feel that way, whatever that way is,
01:25:05is really helpful in trying
01:25:06to change people's minds,
01:25:07trying to understand why people feel that.
01:25:11Good morning, ladies.
01:25:12Are more optional or that that
01:25:13there's some in some way inferior.
01:25:15I notice that at one point, Rebecca,
01:25:16you used the word inferior and I jot
01:25:19down not that this was your view,
01:25:21but that this may be a view taken by
01:25:23some of the in the medical establishment.
01:25:26Anyway, as I said,
01:25:27we're not completely done here,
01:25:29but we are done because the hour is
01:25:31about the hour and a half is up.
01:25:34Wanna let you guys think for 10 seconds
01:25:36about any final comments you'd like to make.
01:25:38While I say that this has been
01:25:41an outstanding presentation,
01:25:43this I think your work as well as
01:25:45a presentation of this quality
01:25:47clearly has great potential to
01:25:49move the needle and to change the
01:25:51way we do things for the better.
01:25:53And I really appreciate that.
01:25:54I had actually expected something
01:25:56really good because I've I'm
01:25:58familiar with Annie's work,
01:25:59but this even exceeded my expectations.
01:26:01I thank you so much for taking
01:26:03the time to speak with us.
01:26:04Tonight,
01:26:04and I want to just let you have any
01:26:06last words you might like to say
01:26:08to this crew who's listening in.
01:26:12Well, thank you for inviting us.
01:26:14My kids were really impressed.
01:26:15I was speaking at Yale
01:26:17from the kitchen.
01:26:20Yeah, well. Doctor Liu and Miss
01:26:24Pierce and Doctor Janvier,
01:26:26this was a wonderful evening.
01:26:27Thank you very much.
01:26:28We wish you all well. Take care.