>>patricia grady: goodafternoon, everyone. or actually, i guess itis -- it is still morning, so good morning, everyone. so it is my pleasure to welcome youhere this morning to hear the national institute of nursingresearch, ninr, directors lecture. this lecture brings togetherour nation's top scientists with appreciative audiences and provides anopportunity for us to hear from some of the best minds in the field and to beable to communicate that across the nih campus as well.
this presentation is being listened to. we have audiences outside whoare tuning in from their desktops. and we also -- it will be archivedas well so that for those people, when you go back and talkabout what a great talk it was, and people say, "i'msorry, i missed it, then they'll be able to tune it in. [laughter] so this the second of twolectures that we have hosted in 2014. and just a little bit of background:for about a little over a quarter of a
century now, ninr'smission has been to promote, and improve the healthof individuals, families, and communities. we have played -- our research hasplayed a pivotal role in the health sciences, leading the way in integrationof the biological and behavioral sciences, which is an area that we excelin and set the -- set the tone for that. whereas most othersare in one or the other, we can bridge those camps. now, each day, nurse scientists aremaking discoveries at the bench in
health care settings and in communities. these discoveries can then betranslated into clinical practice, used to inform policy development, andalso inform the training of the next generation of nursescientists and health leaders, which is very importantto us as a discipline. now, today's speaker,dr. barbara medoff-cooper, is professor at the university ofpennsylvania school of nursing, and she's recognized for herresearch on infant development, feeding behaviors in high-riskinfants, infant temperament,
and also developmental care of infantswith complex congenital heart disorders. she's also the co-inventor of neonur,which is a patented feeding device used to assess feedingbehaviors during infancy. and i remember when you were justdeveloping that on one of my early visits to penn. i thought, wow, that'sreally entrepreneurial. and she has followed through,and it is -- it is available now. it has been used bothnationally and internationally. she has been funded by thenational institute of nursing research,
the national heart,lung and blood institute, hrsa's bureau ofmaternal and child health, and also the benjamin franklinpartnership of the commonwealth of pennsylvania, as well as a number ofprofessional organizations and other foundations. her current study,transitional telehealth homecare, or reach, is a project that examinesdaily telehealth monitoring intervention to improve the outcomes for infantsand their families coping with issues related to congenital heart disease.
now, over the course of hercareer, dr. medoff-cooper has mentored undergraduates, mastersand doctoral students, both in the classroom and inclinical settings as well. her mentorship emphasizes the importanceof integrating research into clinical practice and how clinicalpractice informs research. in this way, she hopes to influencethe quality of care through research utilization models that nursinggraduates will bring to their clinical practice and carry out into thenext generation of research workforce. the title of her talk this morning is,innovations in high-risk infant care:
creating new pathways. dr. medoff-cooper willspeak for about 30 minutes, after which she will moderatea question-and-answer session. so please join me inwelcoming dr. medoff-cooper. [applause] >>barbara medoff-cooper: well, thankyou for the generous introduction. so it is indeed an honor today tobe presenting my research journey. i hope by the end of this talkyou'll be able to see how technology and
behavioral research can be integratedinto a program of research to improve outcomes for high-riskinfants and their families. now, the goal -- the overall goal ofmy research is to find approaches to enhance full growth and development ordevelopment potential for the high-risk infants in conjunction with empoweringfamilies to have the necessary skills to care for infants and improvethe quality of their lives. so this diagram is a highlight -- itreally highlights some of my significant funding, starting with-- yes, my dissertation. yeah, dissertations do count.
and each study has beencarefully linked to the previous study, driven by the findings of the study. so just a reminder of where we've comefrom: this is -- my history colleagues have just said -- convinced me that youhave to really always think about the history. so this was the height of modern care atthe university of pennsylvania nursery in the 1920s, as compared to this. and here we are almost 100 years laterin a critical care unit saving infants and children that we never dreamed wecould save only 30 or 40 years ago.
and just to be forthright, this isat boston children's not at the chop. and that's martha curley in there. some of you recognize her. so i am a clinical researcher. i really started as apediatric nurse practitioner, and my -- and my beginnings of myresearch career started in that -- in that office with these moms and babies. and the impetus for my research questionwhich drove me to my doctoral program was generated byparents of preterm infants.
in the late 70s, we werestarting to see infants born about 1, 00 grams, and theywere relatively intact, which was probably new for us. and yet parents were really struggling. the mothers were asking: "what should iexpect from these kids developmentally?" and "how can i know what my babyneeds, because i'm not very good [unintelligible] ?" so this led me to mydoctoral dissertation,
which the effects ofbiological, environmental, and health factors on temperamentand development in preterm infants. and the american nursesfoundation was my first funder. and i'm very proud to say that becausethey always -- they always believe that the anf really does launch many careers. and we had some significant findings. we found that the infants wereindeed more difficult to parent, as they were not good informants; thatthe most difficult infants were infants who had experiencedinterventricular hemorrhage,
and about 50 percent of these infantswere lagging behind developmentally. and this really formed myquestion for my postdoctoral fellowship. i was fortunate enough to be accepted asa robert wood johnson clinical scholar 1984 to '86. and the question i was asking is:what was the relationship between brain injury and clinical assessment? and yes, that is me as a youngnurse practitioner -- [laughter] -- examining a baby. hard to believe, a long time-- it's quite a long time ago.
so i was fortunate enoughto have, as my main mentor, maria delivoria-papadopoulos -- she is apioneer in neonatal resuscitation -- and britton chance, a noble laureate. they were two amazing mentors. as a team, they were studyingbrain metabolism in preterm infants. dr. chance had developed what weaffectionately called the baby magnet. now, we could not image thebaby's brain at this time. it just was way before thetechnology was available. but we thought -- or they thought thatwe could study brain metabolism using
nuclear magnetic resonance spectroscopyas a way of understanding what was going on in the brain and to really be ableto have a sense of what a brain -- what happens when you have aninfant that has a damaged brain. so this is the babymagnet, it was my job, as a postdoc, to get them in and keepthem quiet for 16 minutes on either side, which was not an easy task. and what i was really asking was whatthe -- what the relationship was between the brain metabolismand clinical findings. the magnet was quite rudimentary, butwe were able to establish a series of
spectra, which provided us with insightinto brain atp phosphocreatine ratios. this is what the spectra looked like. and so each of the ratios told ussomething more about the baby's brain. and, in fact, we were able to establishthat infants with-- who experienced a grade three to grade four bleed -- now,bleeds in babies brains are graded from one to four. and three to four being more serioushad lower levels of pcr/atp ratios, as compared to infants who did notexperience a series of bleeds -- here you can see this isthe infants with ivh,
and this is the infants with the -- notwith -- without the experience of brain bleed -- and that their tone wassignificantly different and their motor function was significantly different. but the magnets were not what iwanted to be the rest of my career. this is not what i wanted to do, keepputting babies in and out of magnets. it was at this point that i was lookingfor a way to assess neurologic integrity that -- than -- other than thestandard neurologic clinical assessment, which brought me to my feeding work. it was dr. delivoria-papadopoulos whosuggested the feeding behaviors had long
been thought of asrelated to brain integrity. and then there were folks in thebioengineering department had a instrument to measure the sucking. so with pilot funds from sigma theta tauand the university research foundation, we generated preliminary data. this led -- and this allowedus to apply for my first r01, which was entitled feeding behaviorsas index of neural behavior integrity. this is the firstgeneration of the feeding device. yes, i could bend down in those days.
can't do it anymore. and you can see here this huge computerand a huge monitor on a -- on a cart. and we always worried thatgoing from floor to floor, which we had to do, thatsomething was going to fall off, and we had some nearcrashes, but we somehow survived. and this is what we are looking at. this is themicrostructure of sucking or suckling. and this slide illustratesthe idealized sucking pattern. so here you can see that we have theexcursion from the baseline -- that's
the sucking strength -- the length --the amount -- the time between from the beginning initiation ofsuck to the end of the suck; time in between sucks; the burst width,which is a cluster of sucks -- this really gives us a good indication ofhow an infant can organize their feeding behaviors -- and then how much timean infant needed to be able to pause between bursts. and we found some significance. we were one of the first labs toidentify a microstructure of feeding across gestational ages so that we wereable to start talking about maturation.
how do we identify -- how do weidentify maturational process? this was one way of letting usknow that this baby was doing well. but we still did not have evidencethat sucking organization was linked to developmental outcome. so using the data from our firstr01, we applied for the second, which was entitled nutritive sucking andphysiologic and behavioral correlates. also at the time, we knew that we neededto have a better instrument to assess infant behavior or temperament. and with my colleagues, dr.bill carey and sean mcdevitt,
and 500 families later inmy primary care practice, we developed the earlyinfancy temperament questionnaire. we also knew that we neededto improve our feeding device, and we were able to obtainboth a sbir phase i and phase ii, phase i from ninr andphase ii from heart, lung, and blood. we knew that we neededimprovement in the device itself. we partnered with engineering colleaguesand the -- and a small business and -- to improve our feeding equipment.
and so the second generation of thekron nutritive sucking device was born. this is the second generation. it was certainly more portable, but weare still building a lot of all of this -- the guts of the device. it was more likely to -- it was lesslikely to fall off the elevator -- -- which was a big deal. and we had much moresophisticated processing. so technology was moving, marchingon, and we were able to harness that technology.
we did have significant finding thatearly feeding organization was indeed a predictor of developmentaloutcomes at 12 months of age. now, the interesting thing is thatthis discussion continues in literature today, whether there's a predictiveability of feeding as a measure of the neurologic integrity; although, theevidence is mounting finally through -- with other investigators that, in fact,infants with poor feeding skills in early -- in the -- early in infancy are-- they are definitely at greater risk for developmental delaysduring the first year of life. so we -- as we begin to move and tocontinue working with our feeding
device, we knew that it was importantfor us to have other populations other than our preterm babies. and i went, actually, trolling throughchildren's hospital to find the worst full-term infant feeders. and, lo and behold, it was the infantswith complex congenital heart defects. these infants with complex congenitalheart defects are medically fragile. they -- just like the preterm infants,they are in critical care units. feeding is -- it was and is --continues to be a significant issue. poor feeding is linked todevelopmental outcomes,
as i have been -- was beating theband to say to the world that's true. and we saw a lot of parent stress, bothin the nicu and in the cardiac intensive care unit, which brought us to thethird r01: feeding behaviors and energy balance in infants withcongenital heart defects. so just to give you a little backgroundabout these infants: infants who experience neonatal cardiacsurgery are at risk for growth failure. over 50 percent of all these infantswill experience a weight-for-age z-score of less than 2, which is ourdefinition of failure to thrive, during the first year of life.
feeding is a problem and continues to bea problem and keeps them in the hospital for extended period of times. nutritional intake is a problem. it's hard to get the calories in. and for the infants who have asingle-ventricle physiology, the hypoplastic left heart syndrome,infants that are going to have a -- you know, a staged correction, theywere at risk for interstage death. at that point, about between 15 to 40percent of those infants died during that period of time between the firstneonatal surgery and about 4 to 5 months
of age. we had a thirdgeneration of sucking device, which was very nice, alittle bit less cumbersome. and now we're no longer building ourpieces of the -- of the equipment, but we are still buildingthe device itself for feeding. so the aims of this study, they were todescribe the nutritional trajectory for infants who had undergoneneonatal cardiac surgery and to identify predictors of developmentaloutcomes at 12 months of age. our measurementsincluded anthropometrics,
which we measured at3, 6, 9, and 12 months. these families came in. and by the way, we also had -- alongwith our 70 infants with congenital heart defect, we had 70full-term healthy kids, families that hung in with -- hungin there with us for a full year. we measured -- we had three-day foodintake measurements at each visit. we completed the restingenergy expenditure and total energy expenditure, which idon't recommend people doing. those isotopes can make you crazy,trying to get parents to save diapers
for 12 days and mark them and put themin their freezer and then mail them back to you. but we did it. body composition, we used a tobec,and we had bayley scales of infant development at six and 12 months. so the resting -- how did wemeasure at resting energy expenditure? well, it was sleeping energyexpenditure for our infants. it's open-circuit indirect calorimetry,and it's canopy-based computerized metabolic cart.
and what happens is the metabolic cartmeasures the infant's respiratory gas exchange and oxygen consumptionand the carbon dioxide production, and then we used a modified weirequation to calculate resting energy expenditure. so first thing we noticedwhen we were [unintelligible] these infants was that these infantshad -- were at great risk even at discharge. so early in the study, we switched --first thing we did was we switched from the cdc weight-for-age standardsto the who standards for newborns,
as it is clear that the who norms weremuch more meaningful for these infants. now, the difference is the who wasable to use thousands of full-term, healthy breastfed kidsto create their norms, where the cdc was extrapolatingdown from healthy older kids. and it was actually the cdc who said itto people about this -- the time that we were starting this study, to switch towho because it was a better measure. so you can see -- i'm notsure if this pointer works. i don't think it -- does it work? yes.
so here's -- so here's zero, andyou would expect the infants to be clustering around zero, and here yousee that they're shifting to the left. so it was just shocking tosee that at about 18 days, 21 days that the majority of our infantswere failing to thrive as we were sending them home. so this was somethingthat is still a problem. you see people arestill working on it today. and we still haven't been able to figureout what it is we can do to increase calories, but we're working -- but we'restill moving forward to try to find
methods to improve this outcome. so when we looked at proportionateinfants and weight z-scores of less than 2 -- again, failure to thrive --we classified the -- first of all, i want to tell you that we classifiedthe infants as a single-ventricle population, which is commonly in infantswith hypoplastic left heart syndrome, and biventricular physiology. most common diagnosis is transpositionof the great arteries and the tetralogy of fallot. now, another way of thinking this is theinfants who have had palliative surgery
are the infants with single-ventriclephysiology and the infants with -- that had experienced corrective surgery,although it doesn't always mean they're not going to have other surgeries, areinfants with the -- with biventricular physiology. so using our definitionof failure to thrive, about 30 percent of all of ourinfants, when we send them home, were failing to thrive for both groups. and then when you look at thesingle-ventricle physiology in infants, well into the first year of life, 30 --about 30 percent were still failing to
thrive. so this is a problem. we worry about this because we worrythat this will actually have a -- have an impact on later development as well. our biventricular kidsare doing much better. we expect them to do. but there's a lot of infants in thatgroup that also have had less serious surgeries, and so i thinkthat that skews the population. so a surprising finding from the studywas that there were no differences in
the resting energy expenditure betweeninfants with chd and healthy infants. now, this was surprising because it wasa commonly held belief that the reason infants were not gaining weight wasdue to an increase in energy expenditure during feeding,during work of breathing. but what we can safely say, what weconcluded from this -- and it was published just this past year -- thatthe poor weight gain is predominantly due to poor intake. so it really had to deal with calories,and because that's what -- that's where the money is.
now, looking at the bayley scalesof infant development for our single infants and our biventricular infants. so the -- if you're not familiar, thebayley scales of infant development is like any other iq test, with a meanscore of 100 for the general population. so the mdi scores, themental developmental index, was within normal limits forboth infants at six and 12 months. you know, in the 90s, but that'swhat most people are reporting. but the -- what's striking is thatthe psychomotor developmental index, motor skills, which areimportant for feeding,
remain quite low, especially forthe single-ventricle infants who, you know, are ranging inthe 74 range, which is, you know -- whichclearly is quite delayed. and these are the infants that areprobably having the most feeding problems, even into 12 years of age. we still -- 12 months of age. so what about maternal stress? well, just -- i'm going -- not going toread the whole -- these whole quotes to you, but these are really compelling.
one mother said: "we were up all night. we had to set up his feedsin the middle of the night. he wasn't gainingweight in great amount [sic] , and we were justconstantly taking it down, cleaning it, setting upanother feeding. another mother said:"vomiting causes stress. it's constant. there is nobreak...there is no moment to relax. you can't go anywhereand not be prepared."
another mother said: "mylife revolves around him. my life revolves aroundfeeding and medicines. that's my day." and lastly, a mother said: "it'shard, and today it's still hard, and "there are very few people i canleave him with with no one to watch i'm with my son 24/7." so we knew that we hadto deal with stress. this was really -- this wasthe message we were hearing. we knew -- you know, clearly,the developmental issues had to be
addressed, but this was somethingwe felt this was really nursing, this belonged to us, and we needed tothink about ways to deal with this. so what we learned: well, we did learnthat infants with complex congenital heart defects continue to be at risk forfailing to thrive during the first year of life. parent stress absolutelyneeded to be addressed. and there was desperate need forparent support post-hospital discharge. when we were writing thisnext -- the current grant, there was -- we sent parentshome with very little support.
so i think things havegotten better today, but clearly, it was, you know, areal deficit in our health care system. so this did lead us to the home --telehealth home monitoring program for infants with complexcongenital heart disease, and we call it reach. now, reach doesn'tstand for anything, but, you know, when wewere writing the grant, my good friend martha curley saidto me, "you have to have a quick, snappy name."
and i said, "okay, well,we're reaching out to parents, so why not reach?" and now the wholehospital knows about reach. so what is reach? well, it takes place at children'shospital and at cincinnati children's hospital. and we have just opened a new site atlurie children's hospital in chicago. it's individualizedintervention for families of infants, post-cardiac surgery asthey transition home.
it's about nursing vigilanceand about ongoing support. we -- our outcomemeasures are parent stress, we improve quality of life, we wantto decrease social isolation for the parents, and decreasesymptoms of posttraumatic stress. for the infants, we want toimprove infant stability, meaning weight gain, and improvefeeding behaviors and adherence, which hopefully willimprove developmental outcomes. and, of course, all of this needs to bedone within a health care utilization system where we are being efficientin the way we're using health care.
so decrease health cost. we actually have a new devicewhich we've built that we're hoping -- actually, it's been licensed. we're hoping that it will cometo market in about a year or so. it's patent. we have two patents. and now it's very convenient tobe using both in the hospital and, we hope, home someday. and that's what afeeding record looks like.
and you can see it'shard to -- you know, each of these peaks,it represents a suck, so that's a cluster of feed -- sucks. so this is a prettyorganized baby and quite cute, also. so it's a -- it's a two-grouprandomized clinical trial comparing health and cost outcomesfollowing neonatal surgery. once consented, families are randomizedto either reach or the unusual -- to usual care.
and this is -- this is a -- one of thebiggest issues and stresses for us as a staff because familyare saying, "please, please, please let usbe in the intervention, but we have no control. so that's probably themost difficult part of this. and the infants are followed untilthey're 4 months of age or admitted for second-stage surgery. the home monitoring, this wasoriginally designed to be a phone call, and they were askedthese kind of questions.
this group of young adults,they do not like phone calls. we text them, and they text us back. and so -- and whatthey text us back, first, they text us if there'sany behavioral changes. if they need to talk tous, they text us anyway. and then we ask them for thesemeasurements of oxygen saturation, heart rate, weight,and previous-day intake. and we send them home with ascale and a pulse oximeter. we also do a virtual homevisit; parents love this.
we -- twice a week, weskype them or we facetime them, the visits. actually, one -- the other day, we had a-- or some of my staff were on vacation, and they were -- and it wasn't quitesure who was going to do the facetime, and a mother texted me,"who's doing my "facetime?" and so i -- so i said i wasn'tsure, but i facetimed her anyway. and, you know, it's just lovelyto be in these people's homes. we get to see the infant. we are able to evaluatehow a mother is doing,
video -- and the video contactincreases parents' confidence. they send us videos if they want usto see a scar that they -- a wound, if they want us to see a baby feeding,if they want us to see respirations. they're not shy, butthey haven't been abusive. you know, we are open 24/7. we didn't mean to be, but we are. and yet the families really are verycautious about when they contact us. but when they contact us, we knowthat we have to do something about it. and we have the ability tothen create a full circle,
get the information, make adecision, and then come back to them. there are red flags. these are -- these are establishednationally for these infants. and so any of these infants hit the redflag with the data they send or we -- during home visit, we havediscovered any of these red flags, then we go into action and make adecision about what needs to be done. the reach nurse responsibilities includechecking incoming data every day. data comes in every day. it goes into our system.
we partnered with a telehealth homemonitoring operation/office/business, and they were able tocreate the software for us. so the data actually comesin, goes into a database, we're able to clickon this -- on the app, and we're able to see the weeks of-- weeks' worth of data coming in and really be able to judgewhether there's any change. we can contact families with a red flag. we respond quickly to family concerns. and we can -- and thenif a concern comes in,
we make a decision whether we're goingto contact the study cardiologist or the baby's cardiologist -- often they're oneand the same -- and then we can get back to the family pretty quickly. we've enrolled 106 babies so far. we have two more years to enroll. we've -- 60 have completed our protocol. we've had no deaths; thank goodness. and we've had no protocol violations. actually, we're being audited.
we have a random auditingon thursday when i get home. they -- you know, at chop, periodically,all our randomized clinical trials get audited, and it's our turn. but we're not concerned. we have -- we have reallytight protocols in place, and we have a -- i havea great project manager. so just a quick look at some of thethings we've been able to do: we've been able to manage moms goinghome; they were homeless. and the baby,fortunately, was quite stable,
even though it was asingle-ventricle physiology. this was a verydisorganized young woman. she had been abused by her boyfriend. everybody was quite concerned. but, you know, we were able to keepthis baby healthy and keep mom pretty organized, and the baby was able tocome in successfully at 4 months for we also have manageda very labile infant, an infant that nobody wanted to sendhome but the mother insisted on sending home.
and we probably had daily contactwith this mother for almost four months. but, you know, this mother wasdetermined to have this baby home, and we were determinedto help support her. and the baby was successfully brought infor its second-stage surgery with really no crisis during that four months. but everybody expected this babyto really be at risk for interstage mortality. so some of the advantages of areach intervention is communication flexibility.
videoconferencing allowsfor face-to-face contact. it allows patients to be discharged wholive in rural areas and also are quite labile. we maintained familyengagement in the infant care. and it increases communicationwith the full health care team. just a little bit of parentalfeedback: it's been -- well, you know, because it'srandomized clinical trial, we haven't -- we haven'treally opened all of the real data. but this is just when the motherssend back their last of their data,
we ask them for a little feedback. and this is some of the comments:"it was good to have you to talk to." "one number to call for all questions. we had -- we didn't have to gothrough the phone tree [sic] ," which makes people crazy. "you relieved some of my stressjust by knowing you were there [sic] ." and i love this one: "i regrettedsaying 'yes' until i went home, and i am so grateful you were there toanswer my questions...you were a text
away." so we're still thinkingabout what the next steps are, even though we have twomore years of the study. we know feeding problems persist andgrowth failure is constantly there with us. and the questions we're asking now: whatis the mechanism for poor feeding skills and growth failure? so i've teamed up with a youngengineering student and a pediatric neurologist.
and we just were funded by theuniversity for a small pilot work, feeding-related psychomotor delays inhypoplastic left heart syndrome and other single-ventricle infants withcomplex congenital heart defects. so this is an innovative technologyto link brain function to feeding behaviors, so i'm backto spectroscopy; it's, like, a full circle. and so what we're doing is we'replacing a probe over the motor cortex, and so, during feeding, the motor cortexis activated and there's increased blood flow, which can -- wecan measure with the nirs.
and the nirs is anear-infrared spectroscopy technique, and it -- and you can see the probe -- idon't know if you can see it very well, but there's a probeover the motor cortex. and this will -- and so whatwe're doing is we're doing mris. we are doing mri for these infants. then we're doing a feeding -- we'reusing the -- using the neonur to do a feeding while we're -- the baby has theprobe over their motor cortex to be able to see what happens to the brain and beable to see -- try to understand with good feeders what themotor cortex looks like,
versus infants thatare struggling to feed. so this is somethingthat's very new technology, but we're veryexcited about this project, and we're about to launch it. we just got through irb for that. but turning towards parent stress:this is another concern of mine. and we do know that the time in thecicu is extraordinarily stressful, and we need an interventionfor short-term stress reduction. and so what i'm in theprocess of writing is for a grant,
and we've collaborated with the folksin mindful meditation department at the hup. and we are also -- and so we're -- whatwe're going to do is first focus groups, and then we're going to do-- try out some intervention. we're going to develop an app that willallow parents to be able to then go on their smartphone or an ipod -- we're notsure yet -- and be able to then have a mindful mediation session right there ina place in the unit where they can walk away from the bedside,get themselves reorganized. a comprehensive approach tofamily-centered care is critical.
and the combination allows parentsto grow to their full potential, as well as their children. and just some of the faces ofour children and our families. they have been wonderful. they have hung in there with us. they've come to the -- to thechop to -- for their visits. and, you know, we've had times wherewe've had -- we had to get the kids to sleep because that's the only way wecould do the resting energy expenditure. and families just were just persistentto get them to sleep to be able to get
the studies done and to do the threefood day intake and to collect wet diapers, all the things thatwe've needed to -- so to have better understanding of how these infantsare growing and developing over time. and thank you very much. it's been fun. we've enjoyed workingwith these families, and we look forward to the new projects. thank you. so any questions?
yes? >>male speaker: as dr.grady noted in her opening, research training is an integralpart of the mission here at ninr. you have exemplaryprograms in research training. do you care to share a little bitwith us about some of those programs? >>barbara medoff-cooper: training -- >>male speaker: research training. >>barbara medoff-cooper: sowe've had a lot -- we know at penn, we certainly have a lot ofour predocs and postdocs,
and i've been fortunate enough to haveamazing predocs that have worked on my projects and have gone out andbecome investigators themselves. i -- my -- the latest one -- actually,she just had a baby three days ago -- but she just finished her phd. and the plan is for me to start writingthis stress and this mindful mediation piece, and then, eventually,it'll become hers for the r01. so we'll do -- we're doing focus groups. then we're going toapply for an r34 and then, from the r34, an r01, and that's when wetransition to the young investigator and
i become one of her co-investigatorsand sort of retire to france. no, we're just goingto go for a few months. so -- [laughter] >>male speaker: thank you. >>barbara medoff-cooper:but we really -- you know, you can't do this alone. you know, and i've had great teams. i mean, even my projectmanager has a phd in nursing, and she's amazing.
my nurse practitioners are --they are working on this grant. and all three of thehospitals have truly been remarkable. and we have tried to mentor them to havepieces of their own project as well. >>female speaker: dr. medoff-cooper,there's been some work out of canada recently about having parents care forthe infants in nicu with nurses as their training and their mentor, as ameans of reducing transition -- >>barbara medoff-cooper: sure. >>female speaker: -- times to the home. >>barbara medoff-cooper: right.
>>female speaker: i'm wondering ifyou've done any work in that area or what your thoughts are. >>barbara medoff-cooper: well, one ofthe things that i didn't mention is that because -- i'm anurse scientist at chop. i have the endowed chair at chop, so ispend a good bit of clinical time there as well. and we do family rounds. we do nursing -- what we call nursingdevelopmental rounds once a week. and we spend a lot of timeworking with families and family needs.
and we -- and one of the things we'retrying to work very hard is getting parents -- i mean, in the cardiac unit,it's a little bit different than the nicu. i mean, we just want to get parents tohold their kids and do some kangaroo care as soon as we can. so it's the first --it's -- you know, first, you have to get all thetubes and wires off these kids. and as soon as we can do that, then wecan make the transition for families doing more care, and we reallyare thinking a lot about that.
but the critical time, itis -- it is more difficult. you know, these two kidshave wires everywhere. sometimes they come backwith their chest open. and so -- and it is verystressful for parents. so as soon as we can, wemake sure, a) the first thing, parents are holding their kids. then it's about doingsome care for them. and then if we can transitionthem into the step-down unit, that's when we' really are starting towork on families doing the -- doing most
of the care for the infants. >>female speaker: inthe canadian studies, they were actually allowing them to carefor the infants while on ventilators or when -- you know,with the wires still in. but then -- >>barbara medoff-cooper: yeah, but thepremature infants and the cardiac kids are different. i mean, i spent a lot ofyears in the premature world. and then when thepremature -- and absolutely,
we are trying to get families tohold infants when they're ventilated, but sometimes it -- butif the baby's on ecmo, we can't do that. you know, so it's a -- it's a-- they're just more critical. they're the sickestbabies i've ever encountered. and -- but i do think we have a long wayto go to get families more involved in the care in this unit. the cardiac thoracicsurgeons are very cautious, you know, and the critical caremedicine docs are very cautious.
so just getting the kids to beheld was a real production for us, and we have now developed a holdingpolicy to make sure that happens because we could go weeks withouta parent holding a kid. so -- and it's justnot acceptable from us, from a nursing perspective. hi. >>female speaker: barb, thanks for anincredible -- for providing us with the highlights of what'sbeen an incredible journey. as i hear this, it just -- it cries outto me translation and dissemination and
i wonder what are the critical pieces ofinformation that you need to get nailed down before it might beready to go more broadly. >>barbara medoff-cooper: well, you know,i think that when i think about what we're -- what i'm doing,a lot of it can be done. i mean, i really do think that we shouldbe assessing feeding behaviors on all newborns, number one. i do think that we need to do abetter job with parent stress. i think the parent stress piece i -- youknow the -- with the reach study we're doing now, although we havemore families who want to collect,
i vision this to beactually state-of-the-art care, that, in fact, this is what -- how everyinfant or child going out of a critical care unit should be managed. your nurses should be on the forefrontto be there to support families. and it will decrease costs. it is much more efficient tohave the nurses as the managers. and they have to, ofcourse, be well-trained nurses. but, you know, you do not need to havethe families coming into the er on all occasions because mom is worried.
but a phone call or a -- or a -- or avirtual home visit makes a world of difference. so i do think that the reach program issomething that i -- what i said on the application, you know, several years agowas this is what -- how the care should be given. so once we finish this and publish this,i'm hoping that this is going to be the way we give care. >>female speaker: just to-- just a quick follow-up, you mentioned cost.
are you currently tracking -- >>barbara medoff-cooper: we are. >>female speaker: -- any costs? >>barbara medoff-cooper:we have a health economist. for sure. absolutely. it's a -- it's a tricky thing to dobecause our kids go from -- you know, we have infants that are, you know, inalabama and virginia and in mississippi, so the costs are somewhatdifferent for different places.
er costs are different. but we are tracking costs. we're tracking the timethat we spent as nurses. we track the time that -- you know, howlong we're taking on the home visits. some of the home visits are quiteshort; some of the home visits, you know, can be very complicated, likethat one baby that was quite labile. those were longer home visits. you know, we really -- you know, thatbaby really gave us some gray hair. we try to cover it up.
but we try to -- [laughter] -- but we did getgray hair from that baby. but that baby survived, andthe baby was able to go home. and baby was able to spend the firstthree months before the second stage surgery with his siblings. so that was a good thing. anything else? >>female speaker: thank you very much. i -- hi.
i'm over here. >>barbara medoff-cooper: oh, yeah, hi. >>female speaker: sorry. i may have missed this,and i apologize if i did, but what was the splitin terms of human milk, you know, and -- >>barbara medoff-cooper: oh. well, i didn't say it. so we have a policy that we have triedvery hard to have all of our infants on
human milk. >>female speaker: were they receivingtheir mother's milk via pumping, or was it donor milk? >>barbara medoff-cooper: mostly pumping. we start pumping, say -- you know,it's so hard to give all the details. so in -- at children'shospital, philadelphia, 70 percent of our mothers aredelivering in the hospital. so from the time they deliver,we have a pump in their room. and we have diane spatzat -- you know, at chop,
who is the person who is really headof the human lactation program at chop. and so chop, in particular, it'salmost 100 percent human milk, as much as we can. >>female speaker: that's great. i used to be a research reviewcoordinator for la leche league international. and if you're ever looking forpopulations who are willing to go to the, you know, ends of the earth -- >>barbara medoff-cooper: they do.
>>female speaker: --to make that happen -- >>barbaramedoff-cooper: they absolutely do. >>female speaker: --they will do it [laughs] . >>barbara medoff-cooper: i can't saythat all -- that the majority want to put the kids to breast. they're worried. they're fearful. they want to -- they -- you know, doingpre- and post-weights is not something
the parents want to do necessarily. but they're happy to pump and beable to then record the intake. >>female speaker: thank you. >>male speaker: i -- that was terrific. i was particularly interested in your-- the trajectory of your grants and the fact that you had an sbir inthe -- in the middle of all that. it made me wonder whether youencountered any challenges with regard to things like product ownership. or following oncaroline's [spelled phonetically]
line of questioning, what has enhancedor created any potential obstacles regarding disseminationof the -- of the products? >>barbara medoff-cooper: so, you know,the sbir was interesting because it was actually a company that was -- thatwas made up of the university of penn faculty, so it was never a problem. and penn always saidit was theirs anyway. -- you know -- and penn paid forall the patent -- the patent cost, which is quite high. so we didn't have to go through a lot ofthat issue that a lot of businesses have
to deal with. so we were all penn. >>female speaker: sothat was outstanding. >>barbara medoff-cooper: thanks. >>female speaker: can you talkto us about the sample size, the racial/ethnic mix, andthe role of health disparities? >>barbara medoff-cooper: soin the premature population, it was almost predominatelyafrican-american in -- at hospital university of pennsylvania.
at the pennsylvania hospital,it was pretty half and half. and so that was never an issue. in the cardiac world, it's a very smallpercentage of infants coming to these major clinic centers for heart disease. we have some. we enroll them. and we've -- and whenwe've approached mothers, we haven't ever had anyproblems with enrolling the mothers, because it's a nursing study.
we're there to support the families. it's just a very small-- it's a low population. now, is it that there's lesscardiac disease or defects in the african-americanpopulation or the asian population? i'm not sure. but we're just seeinga whole lot of them. but if they're there,we're enrolling them. >>female speaker: thankyou so much for this. i'm curious.
my heart is going out to the parents inthe control group for your reach study. and i'm just wondering if you can -- forthose of us who aren't really familiar with this side of it, whatkind of care do they get -- >>barbara medoff-cooper: okay. >>female speaker: -- theones in the control group? >>barbara medoff-cooper: so thesingle -- the infants that have a single-ventricle physiology now inall three hospitals have a follow-up program. so they have -- so we alwayssay we just topped it off,
you know. and actually, when wewrote this, there was nothing. but, you know, and then it happens thatthe single-ventricle folks became very organized. so they have a lot -- agood bit of follow up, but it's not as intensive as ours. they usually have onenurse that's following them, and the parents, theyget called once a week, and, you know, that's aboutit, and they can call her.
the biventricular kids,they're on their own. the majority of them are pretty stable. it's a rare -- you know, it's a smallpercentage of the biventricular kids that are really -- that are complex. and fortunately, we havegood -- some good services, and they're getting care. and we are trackingwhat their needs are. and at the end of the study, we kindof -- we -- when it's all -- you know, when we've finished thelast of the paperwork,
you know, we're able to get back tothem and find out what's going on. and they've had pretty good care,but it's not the same supportive care. yeah. >>female speaker: hi. >>barbara medoff-cooper: hi. >>female speaker: i'ma recent penn grad, and we had a talk by dr. emanuel, whowas talking about a sort of similar program that they were doing aspart of medicaid innovation research. and i was just curiousif there's an idea of,
you know, partnering or expanding. >>barbara medoff-cooper:well, certainly we could expand. ninr just needs to give us moremoney, and we'll be happy to do it. yes. i mean, i think that, you know, when wewere developing this with this company, this whole system with the web-basedprogram where we're able to see all the data, it was relatively new. i think there are other organizationsthat are thinking about this. i mean, it seems to me this isgoing to be the way of the future.
you know, we can reach out tofamilies both virtually and then, you know, with using all the technologythat we have currently that will make a difference in -- tooutcomes for the families. for sure, absolutely. i mean, now -- you know, i don'tknow where your health care lies, but, you know, now, atpenn, there's my penn health, you know, where you can communicate withyour -- with your -- with your physician or your nurse practitioner. i mean, that didn't evenexist a few years ago.
so i think we areimproving the way we give care. this is just much more intense becausewe have babies and families that have a great many more needs. >>female speaker: so iworked in a hospital, and i remember the first time that isaw someone kind of hooked up to all the machines and things. it's very upsetting. >>barbara medoff-cooper: absolutely. >>female speaker: so i was wonderingwhat kind of education you have before
the child is born to kind of prepare theparent and if you've had any experiences with having the rns be mothersand if they handle it better -- >>barbara medoff-cooper: interesting. >>female speaker: --because they know -- >>barbara medoff-cooper:you know, i -- it's -- so, again, because 70 percent of ourfamilies are born at the hup -- i mean born at chop, rather,we do a walk through. but, you know, you never prepare amother and father for what your baby looks like.
i don't -- i don't have a picture here. actually, i have one that -- way thebaby looks like when they come back from surgery. it is -- it's astonishing, you know,to see this experience with a baby sometimes with their chest open. so no matter how muchpreparation you do -- i mean, when i do rounds, you know, with ourteam -- and our team is made up of the clinical specialists,myself, lactation person, a pt, an rot, and speech person --and if we see families before surgery,
i always ask them, "have you talkedabout what the baby's going to look like after surgery?" i mean, so we try toaddress that the best we can, but it's still shocking. and even with moms who arerns, it's still their baby, and their baby is still, oftentimes,on a ventilator and with the -- again, with the chest open and tubesand wires and not responsive. so it's a very difficultsituation, but we try to do our best. we are really working hard at makingsure that the mother's -- at least we've
had the conversation. and they walk throughthe unit and see it. >>female speaker: i'm so gladthat you haven't had any deaths, but i am curious because ninr is thelead institute at nih for end of life and palliative care. and i'm looking around tosee if dr. jeri miller's here. i don't see her. but i'm wondering if there's a study tobe down the road or to perhaps have a branch-off with regard to this and the"palliative care: conversations matter"
campaign. i'm not sure if you'vetaken a look at that at all. it's not my specific area, but they'redoing -- dr. jeri miller's doing some wonderful work with that. >>barbara medoff-cooper: sothe reason we -- you know, the reason i think we haven't had anydeaths is because we have to have these kids go home by 10 weeks. so the ones that are not going home by10 weeks are the more likely to die, and they're usually -- at this point,we've gotten to the -- we know that
those very, very labile kids that are --that are really at risk for interstage mortality, we'rekeeping in the hospital. that wasn't the case in the prior r01where we had -- i think we had like 15 deaths because we -- it was everybody. we just enrolled them, andwe were sending them home, even when they were much morelabile than they -- when we do now. so, yes, we've experienced that as well. and we have a palliative careteam working with the families. but we're not -- we're not doing that.
>>male speaker: thanks for the talk. that was very cool. >>barbara medoff-cooper: thank you. >>male speaker: i had a question on theperspective of the nurses and the health care providers. as you transition to this approachwhere they're available a text away, has there -- have you seen any kind ofadverse effects on the stress of the nurses where they feel that they're kindof forever and continuously responsible? and has there been any issues with that?
>>barbara medoff-cooper:well, we talk about it. you know, when we -- when we have a verydifficult day with one of our infants -- you know, there's justthree of us at chop, and so we do talk about those things. we're all prettyexperienced nurse practitioners, and i also have managedsome of the families, too. and so you just -- you just haveto be able to work it through. and what can we do to help the family?
>>male speaker: sofor your feeding, like, the equipment [unintelligible] so what is the main purpose ofdeveloping or designing these kind of machines? mainly for the facilitatingof the feeding of the baby? >>barbara medoff-cooper: no, it'snot the facilitating the feeding. it's -- >>male speaker: oronly for the reading -- >>barbaramedoff-cooper: it's assessment.
no, it's for assessment of the feeding. >>male speaker: well,how much of the milk -- >>barbara medoff-cooper: not how muchbut how organized the feeding is -- the feeding is. so we're looking at theorganizational structure of the feeding, the microstructure. so if you -- so, for example, whenyou have a premature baby that starts feeding, you know, you'llsee a few clusters of sucks, maybe a few very shortbursts, and then longer and longer,
you know, bursts withlonger time between bursts. as they mature, you know, theyget -- the clusters become longer. like, if you look at a full-terminfant, a good healthy full-term infant, they can do 30 or 40 sucksin a row without any pauses, and you wonder, "howare they doing that?" but the -- but sothat's the difference. it's really a way oflooking at maturation over time. and so for the full-term-- for the cardiac kids, it's really can they puttogether an organized feeding,
so can we send them homewith just oral feeding, or do we need to supplement them? and about 50 percent of all ofour infants go home with ng feeds. >>male speaker: okay, so it still canhelp the nurses or the clinicians to determine whether thebaby's feeding is normal or -- >>barbara medoff-cooper: exactly. it's an assessment tool, asopposed to an intervention tool. >>patricia grady: so do we haveone more question in the back? yeah, last word.
>>male speaker: and so have you hadthe chance to look at organization of sucking and long-termdevelopment into adolescence? >>barbara medoff-cooper: no. i mean, so, you know, ithink that -- right now, we've only gone to 1year of age; although, there are some studieslooking at 2 and 3 years of age. but they haven't gone past that. you know, really, what i think we'reseeing in the cardiac world is when they have poor psychomotordevelopment, so motor development,
it's interfering with their feeding. and that -- and that's just anindication that something is just not very -- it's -- something still needsto either -- that there's some potential for delay. but we really haven't gone that far. i mean, it's an interesting question,but it just hasn't been looked at. i'm sorry. >>patricia grady: sothank you all very much. this has been a verylively discussion group,
and i think that you gaveus so much to work with, barbara, and -- >>patricia grady: -- so many questions. it's really a wonderful example,not only of leadership and nursing scientific leadership, but alsothe way that you attack the problem, that basically we've had the privilegeof hearing about a whole program of research and the tenacity that'srequired to do clinical research and a nice exposition of the numberof variables that you need, if you can't control, to be able tomonitor in order to be successful in
carrying out the studies. you've also given us a window in thefuture in the sense that we talk a great deal about personalized health andtailoring programs to individuals as we move forward and as our health caremoves out more into the communities. we've also talked about self-management,the incorporation of patients and families into care and maintaininghealth in settings other than the hospital. and then you've also given us an exampleof how technology can be very helpful as we move forward.
so i think thecombination of the mhealth, the personalizedapproach to health care, and also the self-management componentsreally show that this is a program that has started and -- in earlier daysand moved through the trajectory of the growth of our health care system andreally is preparing us to move out into the new 21st centuryway of delivering care. so i think you've reallygiven us inspiration because, if we can do it with thetiniest patients that we have, certainly some of the other populationsthat we're going to be dealing with
should offer a littlebit less of a challenge, we hope. so thank you so very much -- >>patricia grady: -- barbara. >>patricia grady: we also have... and we also have a certificateof appreciation to dr. barbara medoff-cooper for -- with gratefulappreciation from ninr for being our ninr director's lecture. so thank you so much.
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