Are we Measuring the Right Outcomes after Preterm Births?

Transcript

• 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&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&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.