Caring for Children with Complex Medical Needs


>>All right, we’ll
get restarted now. Our next speaker
is Dr. Amy Houtrow and she is Associate
Professor of Pediatrics and Physical Medicine and
Rehabilitation at the University of Pittsburgh and she also
represents the AAP Council on Children with Disabilities.>>Thank you, all. It’s a pleasure to speak to you. I have nothing to disclose
except that taking care of children with disabilities as best we can is my clinical
passion, my research passion and my advocacy passion. I want to start out just talking
a little bit about what it means to be medically complex. So this got kind of
definitionally defined about five years ago by
Cohen et al and it’s basically about
increased service need and increased service use
with chronic conditions that are either very
complicated or multiple. And those children
have influences that affect their daily life
from those health conditions, so they’re impacted in the form of functional limitations
or disabilities. And many of these children will
need to have technology use, so specialized technology, such
as a G-tube or a ventilator or something like that. So when we think about this
population of kids we know that in general children with
special healthcare needs make up about 20% of children,
so those are kids that need or use more service use or
have disabilities but they tend to be relatively
minor conditions that are not particularly
complicated, like asthma, ADHD, allergies. And then children with
disabilities make up about 8%, so those are children who
experience limitations in the things that they can do
in their day-to-day life related to a health condition. And then children who are
medically complex make about 1% of children, but they
account for a very high amount of resource utilization. In fact, up to 30% of healthcare
dollars for children will go to this group, and in a hospital
based setting especially, tertiary care facilities it’s a
really high percentage of cost. So from the family perspective
a system goal to help take care of these children would
be a family centered and coordinated network of
community based services that promote the health,
development and wellbeing of children and their families. And in this graph
you can see that all of these interconnected parts
are speaking to each other and they’re coordinated and
there’s a happy little star with the child in
the middle of it. Unfortunately, this is much more
what it looks like for us today, which is a bunch of gobbly-gook
and lack of communication and lack of guidance
and organization. So this is evidence to me that
we really need to be thinking about how to organize care
in general for children with medical complexity
and especially for children that might be emerging
in the population who have congenital Zika. When we think about how we would
measure our healthcare system to meet their needs the Maternal
and Child Health Bureau came up with these metrics. So family partnership and
decision making and satisfaction with care was their number one, and I think that’s a
very important thing to be placing the child
and the family the center of what we’re doing. The receipt of care
in the medical home. Having adequate insurance,
so basically that means that they don’t have extensive
high out-of-pocket expenses and that the care that
they can get is accessible and meets their needs, and so that their insurance
actually covers those services. And then the ease of use of
community based resources, so that might be your
early intervention services or your school based services. And then effective transition
planning for the young adult. When we look at how
we do for individuals who are severely impaired or
have severe impacts related to their health conditions
we see that we aren’t doing
such a great job. Some of these we’re doing
better, less than half of families feel that
they have a partnership, about a third have care in a
medical home, but about half of those kids actually have
adequate insurance and feel, and three-quarters of them feel that their community based
services are relatively easily accessed. And then we know we
have a lot of work to do in healthcare transition. But for children who
are severely impacted by their health conditions the
real truth of this is that less than 10% of those kids
are meeting these health system metrics. And so we know the kids who have
congenital Zika are very likely to also experience the same sort of healthcare system
related issues. So I had the pleasure of working
with one of my colleagues, Dennis Kuo, to develop
our clinical report on the complexity that’s coming
out of the Council on Children with Disabilities from the
American Academy of Pediatrics. And what we set-up was two
basic health system goals – to maximize health function and
development and family function through coordinated patient
and family centered care. For me, this is really important
that we have the word family in there more than once and that
we’re saying the word function and development. In addition, another action
that we want is to be able to provide proactive
rather than reactive care. It’s intended so
that critical medical and health events are averted
to the extent possible, so children can live
successfully in their communities and
experience their lives to the fullest and that
we are paying attention in an anticipatory way to
what the outcomes may be, not just in a reactive way. So this whole issue
that we were talking about with swallowing function,
for example, is a great example. So there are young infants with an intact swallow
reflex may do relatively well and might not show signs
of aspiration or failure to thrive related to intake,
but later in their infancy may. And so to be paying
attention to this in an anticipatory way
rather than a reactive way when the child comes in
with pneumonia or failure to thrive to a hospital. We have a much better chance of helping this child
be successful, and so paying attention
on the onset and then anticipating
what’s coming down the road. When you ask families
what they need, what they say repeatedly
is they want assistance with care coordination. So one of the things that came
up is that only about a third of kids who are getting care
in a medical home for children who are pretty seriously
affected by their health conditions,
and where we’re really falling down is not the presence of
a personal doctor or a nurse, it’s not that usual
source of care, it’s things that fall outside of what the primary care
person can do in terms of getting coordinated services
and referrals when needed. In addition, we know that
there’s a lot of work to be done in kind of providing
family centered care where families feel
like partners. But they also want timely
care, so getting the care when they need it, instead of
calling and saying it’s going to take you six months to get
into the child neurologist. Well, six months is too long
to wait when it’s your child. And then certainly we
have a lot of work to do about improving our
communication between providers. I think all of us
that provide this kind of care have been guilty
of asking the parent, so what did the other
doctor say? And it’s in part because
we don’t have access to those records
and it’s in part because we haven’t gone back
to look at those records and also maybe those records
don’t say adequately enough what we need them to say. And so communication between the
providers is living at the nexus of the family, they have to be
the conduit of that information, and that information means that
it is filtered by their feelings and understandings
of that information. And so instead of
collaborating well with our colleagues we’re
relying on a family to do that collaboration for us,
which I think is a major problem and will continue to be an
issue unless we proactively address it. And then duplication
of services, so in your community getting
some radiology or tests and then having that repeated in the tertiary care setting
is certainly problematic. And then actual access to
providers and specialists, whether that be providers
in your communities, such as physical therapy,
occupational therapy, speech therapy, or whether
that’s to your neurologist or your epileptologist or your
developmental pediatrician. And then certainly decreasing
out-of-pocket expenses. So as we’ve been more
aggressive in terms of tightening insurance
opportunities for families, that means many middle class
families are actually missing, they’re having high
out-of-pocket expenses and missing opportunities
for services or equipment that really might benefit them. What families experience,
these are families of children with medical complexity, is that they’re providing
a lot of medical care. So that’s not a nurse in
their home providing the care, it’s them providing it, so
11 hours a week on average and then two hours a week on
average of coordinating care. So that’s actually
making the appointments, making sure things get
paid for, filling out forms and that sort of thing. And about half of these
families are reporting that they have an unmet need
for service, and that might be for specialty service, for durable medical equipment
service, for homebased services. And about half of them also
experience financial burden. And, unfortunately, about 40% of them are very
dissatisfied with the care. And I think when we’re
entering an area with a disease and condition where there’s a
lot of unknown and there’s a lot of fear we really
have to pay attention to what parents have already
been saying about the care that they feel they’ve been
getting and work to optimize it so that we can meet them and
their needs as best we can. So in pediatrics the medical
home is our foundation of care. And basically when
it’s operationalized that means having a place where
you get care, a personal doctor or nurse that you identify,
family centered care which many of us would just call good
care, make people feel like they’re partners, they
have their voices heard, that they have decision
making and shared goal making. And then getting referrals when
needed and care coordination. So I’d like to take the idea of
the medical home and implant it in a health neighborhood, and I think this is
particularly important because the primary care doctor
can’t possibly do this all on their own and their staffing
resources are not set-up to be successful at doing
this all on their own. So I’m from Pittsburgh,
so is Mr. Rogers, so this is particularly fitting. So if this is your
doctor’s office or your medical home this looks
great for you because, well, here’s some public
transportation to get you to your appointment, and
over here is a school and the early intervention
office is right nearby. And, lucky for you, if your
child has an acute event the tertiary care primary care
children’s hospital is really not that far away from you. And so your health neighborhood
really works very well. And I actually want to spend
a little bit of time talking about health and medical because
really when we’re thinking about the resources that these
children will need they far exceed what we just typically
put under our medical umbrella. And community resources in particular don’t
necessarily identify themselves as medical services, but
are very instrumental to the optimization
of the health and wellbeing of these children. So this tells me the health
neighborhood looks really pretty great, but what if
you live out here? Then it doesn’t look so
great because you live in a more rural area, you
might have less access. It might take you a really long
time to get to your provider or you might not be
able to do that because of transportation problems. And when we think about
kids that may be affected by congenital Zika we’re talking
about a part of the country in the South with a lot
of rural areas and a lot of families living in
poverty, and that heightens for me the concerns
about our ability to actualize the health
neighborhood effectively for these children. So it’s a little bit of a
call to action in recognizing where we’re going to
find our problems. So the idea of the medical
neighborhood was really about linking primary
care with specialists, and that’s the collaborative
agreement. And then when you think about it
if you’re a specialist you think about linking in
with primary care, and often when you’re a primary
care provider you’re not only thinking about linking in
with a specialist but all of your other community
resources that are available. But it really emphasizes
this idea of a transfer of information and an
agreement about accountability, so you can delineate
care expectations. This is mine, that is yours,
so it’s the neurologist who is going to manage
the seizures, but if the developmental
pediatrician or the neurodevelopmental
pediatrician or the pediatric rehab doctor
who will manage the therapy is in the bracing and all
of those sorts of things. So an appropriate
delineation means that we can do our best
jobs for that child and helps us identify the right
people to do their best jobs, and ultimately that helps us
as a team be more successful. So I want to spend a little bit
of time talking in more depth about care coordination. So this is from
Jeanne McAllister and she did a big project with
the Lucile Packard Foundation and out of that came
a lot of documentation that I’ll share with you. So care coordination
is a patient and family centered assessment
driven continuous team based activity designed to meet
the bio, psych, social needs of children and youth
while enhancing person and family caregiving
skills and capabilities. And, unfortunately, we know
this is inadequately delivered for a lot of our kids, and this
is really quite aspirational because many of us talk about
care coordination just being like getting someone
to this appointment and getting it coordinated
with their imaging appointment that they have right before. So when you think about
care coordination one really important piece about that
and I think very appropriate for the children that
will be in our practices with congenital Zika
and other children who may develop later findings
is developing an appropriate care plan which is really
based on a partnership between families
and their providers and having established
and shared goals. It provides very
succinct medical summaries and establishes relationships and then really does clarify
who’s action belongs to whom and develops a plan of
action so that issues that have already been raised
can be adequately addressed. So from the provider perspective
thinking about who might benefit from a care plan is
really important. So definitely the children
who have congenital Zika, children with medical complexity in general are a
great population and a practice to start with. And then you may think about it for children who
are at high risk. And in a practice it’s important that everyone does understand
the value of having a care plan and it’s not laborious, that
it turns out to be helpful. And then using multifaceted
assessment tools, so getting in from
interviews and from testing and potentially laboratory
testing or on developmental screening
and developmental tests and using all of those together
to develop the shared goals and then linking other providers
in as necessary into the process because the primary care medical
home can’t alone implement a care plan for a very
complicated patient. Medical summaries are
exceptionally helpful, especially when a patient shows
up to an Emergency Department or is receiving care in a new
place, and also establishing and negotiating action. So this is mine and
that is yours, and how are we going
to carry it through. And then you need to make this
plan accessible to the people who need it, and so if it
sits in your medical record that doesn’t speak to another
medical record then what value does it have? So families need to be
empowered to carry it and use it and share it. And then as a provider
ultimately from a quality improvement
perspective you really want to be able to track
what you’re doing, track how you’ve been
using that care plan and then it’s a living document
so that you can change it and update it as needed
and use it as an approach to care for these children. One particularly important
thing that I’ve been talking about is connections
or connectivity with the right people
and doing their jobs. And so one way to do this is
to develop a plan or a map that has the child and
the family at the center and then uses this mapping
system to identify areas where there may be gaps or where
services are particularly robust or duplicative and try to
work within that care map. So this one, for example, has a
category of financial supports, medical specialists,
community and state services. Informal support, so
that could be your church or your community group. Childcare, whether the child
is in school or in daycare, and then school based
programming and services because many children
get their services through the school system. So this is a great
example of a care map, and many of you may
have seen this already. So Rich Antonelli and Cristin Lind worked together in the primary care,
care coordination, medical home world, and
she has allowed this to be shared with
multiple people. But what you can see is her
son, Gabe, in the middle and their family surrounding it
and a whole bunch of services. So what we’re talking about is a
very complicated map and things that offshoot from
other pieces of the map. So, for example, for
her transportation to school was a very big issue
and one that took up a lot of space on her map, in
addition to the services and community resources
they used and the providers
that they used. But one of the things that I
think is important about this and important for us as
clinicians is to take away that we’re not just talking
about what we’re doing in our clinic and
we’re not just talking about what we’re
doing diagnostically or what we’re doing in our
hospitals, this is much broader than that and we recognize that
families live in this model of much more extensive
services and needs and resources and that it’s not just
where we sit as the locus. This brings me to the idea
of interdisciplinary care. So interdisciplinary
care is team based and we use shared
goals and objectives. So multidisciplinary care
just means you’re all in the same place and lots of multidisciplinary care
clinics exist this way, especially for kids who have a
specific complicating condition. But the ideal is much more
of a transdisciplinary model where there are shared
goals or objectives, or a transdisciplinary model where not only do we have these
shared goals and objectives but we have overlap of
our responsibilities. And it’s very challenging to
actualize that effectively, and so here I’m presenting
the kind of intermediary, the interdisciplinary
care model. So it usually does involve very
extensive care coordination and should have database
management associated with it. Many times there is
a nursing leadership, as well as physician leadership, and the nursing leadership they
might actually know what’s going on with patients and families
in a much more robust way than the physicians would and it
may have multiple specialists. So this interdisciplinary care
can really be focused in a way to meet the needs of
the child and family because you’re team based and you have shared
goals and objectives. Ultimately we often focus on
specific types of conditions or conditions that are
a group of conditions, cerebral palsy being one
of them, where it’s a group of conditions that make up
that diagnosis of children who are similarly affected. And those teams are built
around what those typical needs of the population are. So if you’re running a spina
bifida clinic, for example, you would have an urologist, but
you don’t have your urologist in your cerebral palsy clinic. But you may, if you’re
thinking about how to build a team based
care approach for children who have congenital Zika, be
needing to pull in because of the high rates of certain
problems an ophthalmologist into your clinic or an
epileptologist into your clinic. Many of these team
based clinics are run out of developmental pediatrics
or neurodevelopmental pediatrics or in some centers, like mine, through our pediatric
rehabilitation medicine. And there’s quite
a bit of overlap between those disciplines,
but thinking about optimizing the function
and health and wellbeing. One of the things that’s
really valuable that comes out of team based
care is the ability to do team based
care conferencing, and that should be goal
directed and goal driven and you should be working to
identify barriers and then how to solve those problems so that
you have coordinated effort. So that one person is
not off doing one thing and another person is not
trying to solve basically that same problem
through another mechanism. Because families have told us
duplicative care is not helpful to them. I really am just going
to end up on thinking about functional outcomes
and interdisciplinary care and how that relates to it. So this is really well aligned
with the 2004 definition of child’s health that came out
of the Institute of Medicine, in which children’s health
should be defined as the extent to which an individual child
or a group of children are able or enabled to develop and
realize their potential, satisfy their needs, develop
the capacities that allow them to interact successfully with
their biological, physical and social environments. And you saw Jeanie McAllister’s
definition of care coordination and that really maps very
well to this, as well, and so does obviously thinking
about the health neighborhood. So, in particular, this gives
us an opportunity to think about the whole child in
the context of their family and helps us think
about capacity building. So from a developmental
expectation perspective I hope that we stop just using the
term developmental delay because that’s not
what we’re talking about for this population
of children. These children will have
lifelong disability, and thinking about optimizing
their ability to function as successfully and participate
in their environment, as well as possible,
should be our goal. And we need to be sure that we’re making
accommodations when needed. And some of it might not
be abundantly clear as to when accommodations
may be necessary, so having team members,
whether it be from developmental medicine
or rehab medicine or therapy, physical therapy,
occupational therapy, speech therapy involved might
really help develop a mechanism by which you can really give
the best, most robust care so children can be as
successful as possible. And one of the things that comes
out of pediatrics is the need for us to figure out how
that we can actually get this to be feasible for
primary care providers and subspecialty
providers to do. And so I’m actually just ending on some recommendations
about coding. There certainly may be a
role for these families for home visits and home
visits are reimbursable and they have various
codes that are different than your office visits. You can also do preventative
medicine counseling and this is particularly
relevant for the potentially asymptomatic
child who may develop something. It’s not preventative
counseling about something that already exists, so if you
are obese you cannot charge preventative counseling
about obesity, it already exists
as a diagnosis. So these would be for
things not yet diagnosed. And then the administration
and interpretation of health risk assessment, which
may be particularly important as we think about
screening and monitoring. From a care coordination
standpoint and more related to complex care in general
there’s a lot of different codes for physician level supervision
for care coordination, and medical team
conferencing, which we bill, we do not get reimbursed for it. And then care planning
and oversight for children who are receiving
homecare and many of these are based on minutes. Additionally, there’s
a billing capability for complex care coordination by
a clinical staff that’s directed by the physician and you can
do this on a monthly basis and it can include face-to-face
time or not face-to-face time by the physician and then
additional staff time is additionally codeable
and reimbursable. And then for the children that
we’re talking about specifically for this conference
there’s a lot of central nervous system
assessments that can be coded, in addition to whatever
you’re doing in your visit. And some of us may be doing
psychological testing, developmental testing, and
neurobehavioral status exams in our clinical setting which
are also ability to be coded and then billed for, as well as even just paper based
emotional assessments. And then particularly relevant
here is vision screening, which is also an
available service. The last thing that I wanted to
talk about is that I anticipate that we’re talking
about a high need of durable medical equipment for
the population of babies born with congenital Zika,
and what that means is that increases the need for
encounter based documentation to get these services delivered. So a year ago we came with
the MACRA rule about a necessary face-to-face
encounter for physicians who are MPs, clinical
nurse specialists and PAs within six months before
ordering durable medical equipment and that needs
to document that need. And so a family can’t
call you and say, oh, now my child needs X, Y and Z
without adequate documentation for it to be paid for. This really came out of CMS and
issues in the elderly population for expensive durable medical
equipment, like scooters, for people who are on Medicare. And so it’s a trickle
down impact on kids, but it’s particularly
relevant that we’re thinking about function and outcomes
for these children in a way that we’re documenting as such so that we can then support
their medical equipment needs because these are what lets
people live successfully at home, lets children interact with their social environments
as best as possible. So I want to thank you
very much for your time and happy to take questions. [ Applause ]>>So Amy, Susan Hyman, could
you comment on what Ed said earlier about
the potential progression of this disorder, that primary
care providers are going to be in the position to talk
about palliative care, and I didn’t hear you talk about
that in the context of comfort and training in the
medical home?>>Yes, I think that’s a really
important thing and something that many primary care
physicians don’t have a lot of experience in training with. And so it’s often left to the tertiary care team based
clinic to do those things. But I think what families want
is from their pediatrician who they trust and know
very well to be able to talk about and anticipate. And I think that issue about anticipation is
particularly challenging because in addition to the kind
of fear that exists about a new and unknown condition
and the lore in the media and information that may not
be accurate, so there’s a lot of emotional stuff at stake
in addition to the emotions of knowing that your infant or
baby is progressing in a way that really is concerning
from a health and wellbeing perspective. And this I think
is also complicated by the extreme irritability
issue. And I think that that will take
a lot of very close attention and a lot of psychological
support for families that may not be readily
available in certain health neighborhoods and so hopefully
can be accessed. But I think engaging and
thinking about palliative care, not from cancer, you’re going to
die in six months sort of way, but in a much more let’s
think about comfort and what our goals are. It’s essential to be
incorporating those into our goal setting. And that’s an excellent point and what I didn’t really spend
a lot of time talking about, Gabe’s care map, is there’s a
lot of legal issues that were at play and making
decisions ahead of time about resuscitation and
intervention that need to be documented and planned
and discussed before it gets to the point where those
interventions have already been delivered. And that’s an excellent point and certainly I think our
pediatric palliative care colleagues would really embrace
the idea of being more engaged as we think about this
especially in the infant period. Thank you. [ Applause ]>>So as I think most of you know there have been
some pre-meeting discussions that have been ongoing. And there are three groups,
the first group that’s going to be presenting is Dr. Wanda
Barfield, and I’ll let you talk about what your group is.>>Good morning, everyone. I’m Dr. Wanda Barfield. I’m the Director of the Division
of Reproductive Health at CDC in the National Center for
Chronic Disease Prevention. And our group, group one,
is also led by Sara Oliver, who is an EIS Officer in the
National Center for Immunization and Respiratory Diseases. And, as it’s been said before, this response is
incredibly complex and involves many
different folks from different parts
of the organization. So we’ve so far had two
meetings with experts to think about the issue of the initial
management and care of infants with suspected congenital
Zika virus infection. And I think it’s
important to note that there’s a current
interim guidance and given all of the evidence that continues
to evolve there’s an opportunity for us to think about
further guidance based on new information. So the last guidance was
updated on February 26th, 2016 and that had the
considerations for revisions or expansion based on
new recommendations. So what we’re going to think
about within this group one with regard to current
guidance is the population. So we have newborns
who are suspected to be infected perinatally
and these are infants with suspected congenital
Zika virus infection but also those infants
with microcephaly or intracranial calcifications
detected prenatally and at birth. But I think what we’ve
learned here so far is that there really
is this spectrum. And so what do we need to
consider particularly in terms of the assessment
of this population? The evaluation includes physical
examination and lab evaluation, imaging studies and
additional testing, and then the management
including specialty and subspecialty
consultation, and inpatient care with outpatient referral. And one of the considerations
we wanted to think about is the opportunity to
certainly create continuity within the inpatient and
outpatient environments. So, again, this is the interim
guidance, and I don’t want to go into detail for all
the recommendations. But the first figure talks
about sort of a diagnostic path to think about infants whose
mother have traveled or resided in an area with transmission
during pregnancy. And, again, this is an
evolving issue and it may be that we’re now starting to
see changes within the US in terms of this evaluation. But for the group
here, the microcephaly or intracranial calcifications,
we know what we’ve learned from our presenters today is that there could
again be a spectrum. And some of the things
that we wanted to consider in our discussion was given the
current guidelines what are some of the pieces of
information that need to be updated or revised. So, again, just thinking
about the consideration of the population, so
who are the infants that we’re talking about? If we’re talking about
infants who are at risk for congenital infection
and they’re seen initially in the hospital what kind of
diagnostic evaluation needs to be done at that point. And then another discussion that
had come up from individuals in our group were what about
infants who may be born in more remote areas and what
are some of the considerations in terms of initial
hospitalization versus transfer, and how should we also think
about infants say, for example, within the first month
or within the first weeks or first days based on
how they might be seen. And, again, we’re fortunate
as information is evolving that we’re now starting to
define congenital Zika syndrome, however, there’s still things
that may need to be taken into consideration as we try
to evaluate these infants. And then what other signs and symptoms could be
considered symptomatic, perhaps we don’t see an
infant with a lot of features of microcephaly, however, if
there are some of the features that were described today
in terms of abnormal cry and other features how could
we look at potential symptoms that would still fall within
congenital Zika syndrome. And then what clinical problems
may need to be addressed in the inpatient setting,
given the family’s location and resources for referral, and how can we avoid
misdiagnosing newborns that may be attributable
to other causes. We also want to think
about how we’re going to appropriately counsel parents
as we assess their infants. Individuals talked about the
concerns and issues related to ethics, issues of difficult
discussions with families, how do we support families in
the context of their infants. Other considerations
for clinical and laboratory evaluation
that was discussed by the group included whether
an infant had ultrasound, that’s currently being
recommended be conducted if a fetal ultrasound
demonstrates microcephaly. And what other assessments,
including CT or MRI, should be conducted
at that time. And do all infants with a mother
who has traveled or resided to an area with Zika virus
transmission during pregnancy need an initial evaluation
besides the assessment for microcephaly and
intracranial calcifications. So, of course, we’ve heard
about the need for eye exams, hearing and other labs. And then do infants need direct
testing of their blood and serum if core blood is available,
particularly if they’ve been at risk, and we need to reevaluate the current
recommendations and see if there’s further testing
that should be done. Other questions that individuals
raised was should Dengue testing occur in areas where there’s
no known transmission, in terms of thinking about
the amount of blood and serum that may need to be
taken for infants, what things should be
taken into consideration. CSF testing was also discussed,
if that should be incorporated into the evaluation of an infant with suspected congenital
Zika virus infection who may not have obvious
symptoms of a syndrome. And should testing
of other body fluids, which was raised earlier this
morning, to include urine, saliva and also blood spot
was mentioned, as well, and other laboratory
testing given that these infants have CNS
abnormalities what other assessments including
endocrine evaluation or immune function
testing should be taken into consideration, as well. In terms of further
management and follow-up, the other consideration is what
other specialists should be included in the inpatient
setting. We heard earlier today
about perhaps the need for pulmonology, also the
need of perhaps surgical or surgical subspecialty
support, that may need to be taken into
consideration for these infants who may be very medically
complex. And then another discussion
was that there are infants who are going to be located where there may be
limited resources and so should these
infants be transferred for further evaluation
and management. And then given the potential
limits of some tests we may need to think about the
timing of evaluation. And we did hear from Dr.
Ventura about the assessment that they’re doing in terms of
retinal evaluation and timing, so are there certain times
that we can think about, again, so that there’s an
opportunity for families to coordinate their evaluation. And then what are the challenges of reporting these congenitally
exposed infants to state, local and territory health
departments for inclusion in the US Zika Pregnancy
Registry. Currently, we get information
that comes with regard to maternal testing and
labs and as we think also about infant assessment and an
infant follow-up we’re going to need to think about how that
information may be reported so that we can continue to follow infants
through their care. Other considerations, we’ve
heard from Dr. Trevathan about the complex
neurologic issues and how can we assess those
issues in terms of management. Also, other comorbid
conditions could occur, like infants could be
affected with preterm birth or have sepsis and
how are we going to also assess those
comorbid conditions, and would those conditions
would the management differ. We’ve had some discussion about whether surgical
interventions could be potentially different or
not, and so these are things that we’re taking
into consideration. Also, more recently given
the case that we heard about in Utah I think it’s
important for us to think about the handling
of body fluids. And we do know from information
at least for congenital CNV that that’s something
that may be persistent for quite a long time,
from months to years. So should there be
additional consideration in terms of infection control. And then what other
considerations should we think about. So for group one
we’re really thinking about defining the population of
newborns for further evaluation with that initial birth that
may include an assessment for infants who do not appear to
be affected, but then that group that does appear to be at risk
for congenital Zika syndrome, and however we do want to think about avoiding unnecessary
workup and evaluation. And then resources may be
limited in certain areas, so we need to consider
the timing of some lab and imaging studies and the
location and availability in terms of pediatric resources. And then to maintain continuity
of care, referrals need to be made for long-term
care and evaluation, and we don’t want
infants and children to be lost to follow-up. And those that have no
evidence of abnormalities need to be followed, and that will
be addressed by group three. So as we are having these
discussions over the next couple of days we want to
think about how each of the groups will be able to
connect and relate to each other so that we have a
comprehensive assessment. So I just want to thank
the group one contributors. Again, as was mentioned by Fan
Tait, it really has been amazing to see how responsive people
have been and people were more than willing and able to
participate in phone calls that were done with fairly
short notice, and we just want to appreciate everyone’s
contributions. And thank you, all,
for your support. Thank you. [ Applause ]>>I may be the only one who is
confused, how does this relate to the Registry, the
recommendations in the Registry?>>So the current Registry gets
information that’s reported to states about infants, as well
as pregnant women and newborns. However, in terms of the
potential continuity of care and more information for
follow-up that’s still part of what the Registry is doing. But this is more clinical
care and guidance for infants with suspected Zika
virus infection.>>But at this time the
recommendation would be if you identified a
patient you would refer them to the Registry?>>Ideally, yes,
but that would go through the state
health department. [ Inaudible ]>>Yes, I think that
just in terms of as the message goes out …>>Yes.>>… that there has to be
clarity of what’s being asked because you’re asking people
to both refer to the Registry so we learn things,
but at the same time to follow the guidelines
for clinical care.>>Yes, your point
is really well taken. Yes?>>Excellent presentation,
and I want to praise you for emphasizing the importance
of longitudinal follow-up and engaging the families to
understand the reason why. But currently in many of the
state’s programs with children with special healthcare
needs that direct engagement, sending out visiting nurses, making sure there is
care coordination, making sure that their knowledge
of available and where you need to go for regional
resources is not taking place. And I would strongly suggest
that this be an opportunity to really tighten up
those fragmented services because this would not only
be the appropriate thing to do scientifically, but
it’s the only way you’re going to get more positive
community responses and not misinformation
and panic.>>Yes, I think that that’s
a really important issue and I’m hoping that the
expertise of Amy Houtrow and others can help us
to really address this. I think Zika is not unique
in the creation of challenges for children and it may
uncover some of the issues that really do need to
be addressed in terms of creating continuity of
care for these infants, and there will be
substantial barriers that need to be addressed and uncovered.>>And I will just share
with the audience is that 30 years ago when I started
my physician career I got – I had the experience of
seeing all the children who were graduates of the 1964
congenital Rubella epidemic who were turning 21, so I
started practice in ’85, these children turned 21 in ’85. And the parents were
most grateful that the health departments
had helped in facilitating accurate
diagnosis, but they damned health
departments for abandoning their children in an era before we
had preschool support, staff line supports, and
other kinds of things. And so I think that’s a historic
lesson that is important to understand and to make
sure that we don’t pretend that we don’t have any resources
and legislative power to do some of the things that are
necessary for this.>>Yes, so I think that some of this discussion will also
be continued in group two, as well as group three. So I think these are
really great points.>>Renate Savich from the
University of Mississippi. What do we know about
the sensitivity of the current testing
and the turnaround time? And I can just see a
problem with maybe some of these babies will be
discharged before the results come back or were convinced
that it really is Zika and it’s a false negative. You know, what kind of guidance
do we have at this moment for the medical community?>>Yes, I think your point
is really well taken in terms of timing, and perhaps
Marc Fisher may be able to address some of this. But with regard to some of the
testing that’s going to CDC versus commercial labs there is
a variation in terms of the time for return of information and
it will affect the continuity of care and decision making. So I think at this time
it’s really variable. Yes?>>So the turnaround
time depends on the type of testing we’re talking about and the laboratory
it’s going to, PCR testing has a fairly
rapid turnaround time, can be performed
within the same day. The IGM antibody testing
takes two days to complete, but if confirmatory testing
is performed with PRNTs that could take up
to an additional five to seven days to complete. So if you’re performing PCR
first and that’s negative, and then you go on to IGM
testing, the full battery of testing could take a
week-and-a-half to two weeks to complete at a public
health laboratory. Commercial laboratories
may have quicker turnaround with regard to PCR. As far as sensitivity,
we don’t know. At this point we would
expect that an infant that was infected congenitally, the ones who have
consistent clinical findings, most of them were born
to women who were living in other countries and infected in other countries
during early pregnancy, and the mothers are
diagnosed either by PCR or IGM during their
acute illness and the babies are
still IGM positive at the time they’re born. Most of the babies have
not been, that I know of, PCR positive at birth. There have been babies in other
countries, a couple of reports of perinatally infected babies
where PCR testing was useful. So it really depends on
the timing of the infection and the specific situation
that’s being assessed as to what will be the
appropriate testing. And the specimens that will be
tested I think is still being worked out. At this point we recommend
testing on serum for PCR and IGM and then CSF when indicated,
but I think evaluation of urine has been discussed
and needs to be considered.>>Yes, and Sara Oliver and I
are working with other experts and the pregnancy and
birth defects team to think about diagnostic testing
that should be considered. So that’s evolving, as well, and I think those points are
really important in terms of the timing issue
that you raised.>>As part of diagnostic testing
would there be consideration of taking advantage
of a new modality, let’s say like optical
coherence tomography of retinas to centralize that so that the
link between the lab values and some of the biomarkers, both
CNS and ocular, could occur?>>I’m not really familiar
with that technology. Certainly would be
open to any input. But I think another broader
issue that was brought up more practically speaking
was telemedicine opportunities, particularly with regard
to assessment of the retina and given what we
may know in terms of potential limited
resources geographically.>>And I would build on the
ways that ophthalmologists, pediatric ophthalmologists from
regional centers have figured out how to follow the
diverse group not analogous to this population, of
retinopathy of prematurity and retinopathy of prematurity
in developing countries, because they’ve really
worked hard to develop some of that telemedicine capability. And thank you so much
for bringing that up.>>Thank you.>>The ROP is active, so it’s
an active disease and you have to do the telemedicine
according to follow these babies because they can
progress to blindness. In these cases the
progression it will be from let’s say a nerve, from
a pink nerve to a pale nerve, but the disease cannot as
long as we are following now, the scar is not increasing,
there’s no progression in terms of aggression to the eye. So I think that telemedicine
is important, the documentation is
important for sure, but not with the sense of,
okay, we need to follow because maybe these babies
they need to be referred to a tertiary center for
care, treatment, what I mean. Also, OCT, as you are
mentioning, we have done in eight cases OCT, and it’s
very hard to do OCT in babies. They do not cooperate, they
are crying, like I said. We took maybe one whole
day to have those images, and they do not bring us so much
information for general care, it’s more an ophthalmological
curiosity let’s say to see where the aggression of
the virus or the toxins that the virus releases, we still don’t know what’s
causing these lesions, what layers of the
retina are being affected. But not for, I don’t think this
for general – to make it as part of the guideline, this is not
really necessary for all babies. It’s really hard to
do in all babies.>>Thank you.>>So just to keep us
moving along on time, our next speaker is going
to be Dr. Jan Cragan, she’s from the National
Center on Birth Defects and Developmental Disabilities,
and she’s going to be talking about the work from group two.>>Thank you, Sonja. And I want to introduce
my co-lead for this group, Dr. Liliane Louis, who is the IS
Officer in the National Center on Environmental Health. So our group was tasked with
looking at outpatient care and follow-up through the
first year of life for infants with anomalies thought
to be associated with congenital Zika
virus infection. And so these were infants
that have laboratory evidence of infection with Zika virus or
with an unspecified flavivirus and to also have
microcephaly or at least one of the other anomalies that’s
thought to be associated with congenital Zika infection. And we were tasked with looking
at care, you know, the best type of care for pediatric providers
in the primary care setting, but also looking at providers
who are working in settings with limited resources. So those without pediatric
subspecialty readily available or where parents have to travel
to get care, for example. So currently the guidelines
on the CDC website talk about long-term follow-up
for infants with positive or inconclusive Zika
virus test results, that include an additional
hearing screen at six months of age, an audiology follow-up of abnormal newborn
hearing screening. It calls for continued
evaluation of developmental
characteristics and milestones, as well as head circumference
through the first year of life. And consultation with
appropriate medical specialists, such as pediatric,
neurology, development and behavioral pediatrics,
physical and speech therapy if any abnormalities are
noted and as concerns arise. And so as we listened to people
talk on the pre-conference calls and got some individual
feedback by e-mail from folks there were some
general concepts or approaches that seemed to emerge. One of these was that
care of the newborn with anomalies thought
to be associated with Zika infection
is a continuum. So there’s a need for medical
homes, subspecialty care and coordination of
community resources that begins really at birth. The evaluation, the plans that
are made, the consultations that happen in that newborn
period need to be continued and followed through over the
next months and built upon. A second concept was that
the disease manifestation and management can vary
from infant to infant, so clearly not all of
these infants have the same abnormalities, they’re
all not going to need exactly the same
care, that really we need to develop some guidance
that can be customized to the individual patient. Another concept had
to do with the fact that the systems available
for care can vary from state to state, so qualifications
for Medicaid or early intervention
services differ. A child may qualify for
those services in one state, but not in another depending
on what their condition is. And also that there
are available family to family health information
centers where families with children with disabilities
help new families dealing with these issues navigate
the healthcare system and draw on that kind of support. Another approach was
the need to utilize and link existing
guidelines and infrastructure and to avoid reinventing
the wheel. So, for example, use of standardized preventative
pediatric healthcare schedules, such as the AAP Bright
Futures Program, to utilize standardized
developmental screening tools. As you’ve already heard, to
build on the existing protocols for evaluation and
referral of infants, for example with
retinopathy of prematurity, not for the same care but
that those referral patterns and the specialists involved
may have a basis to help with the Zika infants, as well. Similarly, building on the
early hearing detection and intervention programs,
recommendations about referrals for any child with an
abnormal hearing screen needs to be referred for
vision screening and other types of
testing, as well. And then there was the
realization that there’s need for ongoing monitoring
for new manifestations and progression of
existing symptoms. So, as we’ve already
talked about, worsening of neurologic
impairment over time, new onset of seizures that
may not have previously been apparent, continued
failure of head growth, development of microcephaly
over time. So we organized our thinking
around several different domains or just areas of care that
are needed for these infants. One of these was
the medical home, and there was the
realization that you need to provide general pediatric
care for these infants as you would for
any other child, so that they get the childhood
regular immunizations. Dental care is another
thing that comes to mind. We need to ensure that there’s
coordination of specialty care and planning for care of
existing conditions and, as I said, that begins
in the newborn period. We need to provide ongoing
monitoring for new conditions or progression of existing ones. Need to facilitate and
refer families for support and link them with
community resources. And then to assist in the
planning for longer term care. We heard a little bit about palliative care
if that’s needed. In terms of growth, nutrition
and feeding there’s the need for frequent measurement
of weight, length and head circumference
throughout the first year. There’s a need for assessment
of swallowing impairment and is the baby going to be
able to manage solid foods and when will that happen. And then watch for
the risk of aspiration and gastroesophageal reflux. In terms of development,
again, we wanted to ensure that the planned
follow-up with developmental or behavioral specialists
or referrals to early intervention
noted at birth is continued and that you facilitate
initiation of that care. There’s the need to perform
regular developmental assessment, including motor and behavioral development
throughout the first year to monitor for deterioration
of existing function, emergence of additional
developmental abnormalities or comorbid conditions. And that developmental
screening, and I would say it’s really
more of developmental assessment and not just screening,
but the assessment of these children’s
development needs to be done using a
standardized instrument. In terms of hearing, one of
the issues brought up was that audio-acoustic emissions and auditory brainstem response
testing really assessed somewhat different things. And ABR is perhaps more focused
on hearing loss that occurs as a relative CNS
neurologic impairment. And so we don’t really know
yet which is the best way to assess hearing impairment
in these infants, and it may be that both types of testing
need to be done at some point to really understand
what’s going on. There’s the need again to ensure
that the planned follow-up with an audiologist is done if there’s an abnormal
newborn’s hearing screen. And to obtain an additional
hearing screen at six months of life even if the
screening at birth was normal. In terms of vision, again,
ensure the planned follow-up with ophthalmologists
for abnormal findings and if an exam is not
performed at birth then referral for an eye exam including
a retinal evaluation after hospital discharge. In terms of neurologic
symptoms, we wanted to be sure that follow-up with the
neurologist is conducted as identified. We feel there should
be periodic assessment for new neurologic
symptoms or progression of existing ones even if the initial neurologic
evaluation was normal. So watching for new onset
seizures, as you’ve heard, and those can manifest
in subtle ways such as infantile spasms
or partial seizures. And then there’s the
need to discuss plans with the neurologist for
management of ongoing symptoms. So, for example, if a
child is on medication for seizures what does the
primary pediatrician do if there are breakthrough
seizures, as the child grows does the
dose need to be adjusted, those kinds of issues. In terms of mobility, this
can involve contractors, arthrogryposis, hypertonia,
hypotonia or specific anomalies,
such as club foot. Again, ensured plan for
follow-up with physical therapy, occupational therapy and
rehabilitation specialists for abnormalities noted at
birth and as new ones occur. One suggestion was to build on
the existing network of care for infants with cerebral
palsy who will have many of these same referrals,
they may get different care but if you have those referral
patterns set and you know who to call on, you
know who to refer some of the Zika infants to, as well. And then ensure that
there’s orthopedic care for the club foot or any other
limb anomalies that are present. And then there were a few areas,
other thoughts that we had. One was assessing whether these
infants are at increased risk for infection, and that
emphasized the need to obtain routine
childhood immunizations. But there is a precaution for
pertussis containing vaccines in the setting of progressive or
unstable neurologic disorders, uncontrolled seizures or
progressive encephalopathy until those conditions are
stabilized, so that’s something that needs to be
thought about in some of these Zika infants, as well. In terms of respiratory
status, monitoring for apnea, aspiration, frequent infections
and other complications. In terms of endocrine
dysfunction, which has been related to
abnormal CNS development, there’s the potential
for an increased risk for hypothalamic dysfunction
leading to pituitary deficiency and this can manifest
with hypothyroidism, growth hormone deficiency or
central adrenal insufficiency. We thought about bowel and
bladder care, which is maybe not such an issue over the
first year of life, but in just monitoring patterns
and looking at ultimate plans for toilet training, if
that’s going to be possible. The irritability of these
infants and management of sleep disruption,
probably both for the infant and the family. And then the importance of
reporting infant outcomes at two months, six months and
12 months of age as is asked by the US Zika Pregnancy
Registry. There are specific forms to
be filled out and follow-up for each of these
infants in the Registry, that usually gets reported
to the health department which then reports
to the Registry. And I think we felt that
needed to be done, as well, and not get lost in all
the care that’s going on. So what we hope to accomplish
this afternoon is to try to identify some of the specific
tests and timing of evaluations over those first 12
months, with the goal of hopefully developing
perhaps a timeline of care for practitioners and for
parents to look at the things that need to be assessed, you
know, what’s coming up next. The parents can be
prepared for all the things that are being looked at. We want to outline content
that might help the development of toolkits for providers
and parents if that’s going to happen. And then one additional
item was to try to quantify the additional
time for care and reporting that’s going
to be required of providers and list the appropriate
CPT codes and modifiers that will help them be
reimbursed for those. So I also want to thank all
the members of the work group that have contributed so far and
those that provided information for our consideration. And, with that, I
think I’ll stop. Thanks. [ Applause ]>>That was great. Thank you. I know that there
were early discussions about [inaudible] CPT
codes, and I wonder if anybody has an update
on that discussion?>>I’ll have to ask
people from AAP. Go ahead, Cindy? The group didn’t get
further than just recognizing that that was something
that needed to be addressed.>>I think, Bonnie, at least
initially when we were talking about CPT codes specifically
related to Zika per se, but all the rest of the things
that we are talking about, as you know so well, already
have the appropriate codes and we have not moved
forward on the other. [ Inaudible ]>>There were a couple
of discussions, but as you know it would take –
we’ll be looking at that still, but it takes awhile to move
something like that forward but it’s a good point.>>So, again, Renate Savich. What is known about
the long-term course of particularly the babies
that have severe microcephaly? Do we anticipate that they
will pass away from apnea? I mean I notice you talked about
apnea monitoring, are we going to tell the families rush to
the ER and intubate your baby and this will get better or is
this the natural progression? I want to worry – you
know, I worry a little bit that we don’t give
them a false message that if you do everything
right things will be fine when there may be a
natural progression, like a trisomy 18 or a severe encephalic. And I think this is causing
some ethical consternation among neonatologists about how
aggressive should we be when we don’t know, but I mean
if there were another baby that had some of
these CNS findings in some situations we might
not be particularly aggressive or at least offer
that to the families. And I don’t know
that we’re offering so much nonintervention. And what’s the right answer? I don’t know that either, but
I think that has to be brought up during this day-and-a-half. Or what the MFM community
should be offering to families, as well.>>I think we don’t really have
answers for that longer term, you know, how long
infants are going to live, what may be the complicating
factors that contribute to death of those that die, you know,
how can we predict that based on the findings early on. We didn’t talk about that
a lot yet in the group. I think that’s an
excellent point. We did mention planning for
longer term care and that would, of course, include some
anticipatory counseling about the possible outcomes. That’s an important point, but I’d say we really don’t know
quite how to frame that yet.>>Hi. Katie Beckman
in the Administration for Children and Families. I apologize if my
comments that I’m about to make have been
addressed elsewhere, but I haven’t – I don’t think
I’ve heard them quite yet. I’ve heard about a care
plan beginning at birth and I’m a bit concerned
about a lack of discussion about education and support of
the family during prenatal care. And the reason I mention this is because I think it’s a
little too late to begin that care planning at birth. Those beginning months are
critical for attachment to develop and, as many of you
know, with the irritability, with crying, difficult
to soothe, feed, forming that attachment
and building self-ethicacy as new parents is
incredibly difficult. Risk for postnatal
depression is incredibly high. And I think we really
need to take it seriously, that we’re not just caring
for the child but we’re caring for the family as a whole. And that really needs
to be seamless support from prenatal through
the lifespan.>>Thank you. We’ll take that recommendation,
particularly about prenatal counseling,
as well.>>Sharon Lehman, Ophthalmology. I would just counsel
that you have a follow-up for the audiologic care, but
you have no follow-up scheduled for ophthalmology. I would just rethink that,
and I’m happy to talk with your group about that. Many of the things that are
going to go wrong are not going to be evident at that
first retinal exam. And everybody is focusing
on the retina here and that’s a done deal, it’s really the neurologic
visual impairment that’s going to – and there are
interventions that are specific to CVI that can be used. So I would suggest that you
rethink that and have a three to six month or however
you want to coordinate it, but there needs to be follow-up
with the ophthalmologist.>>Yes, this was just
sort of the initial kind of topics that we brought up. Our discussion this
afternoon is going to be more to that point of, okay,
when do these things needs to be assessed and
that’s a very good one. We didn’t mean that this was
the recommendation for eye care.>>Michael Agus, I’m from Boston and representing AAP Critical
Care, as well as Endocrinology. So just on the critical
care part for group one, we have been talking about the
AAP guideline on withdrawal of care or not offering
advanced care. And so I think that’s
certainly something that our group can kind of talk about for the initial
inpatient phase. On the endocrine side,
though, I just wanted to – I appreciated the fact
that you have some testing that you’re planning to
schedule over the first year, but I would just
caution that some of the central deficiencies
originating in the pituitary by the time they get recognized
with frankly low levels, certainly in the severe group
I’m not sure what we can do, but if there is really the
spectrum then there’s going to be a group that we
can really intervene and make a big difference on. And so I wonder if there’s
a way to schedule or kind of recruit some kind of cohort
for provocative testing to look at the hypothalamic,
pituitary, say thyroid or growth hormone
axis so that we can with provocative testing
kind of actively pick those up in some subset and
maybe establish some kind of prevalence and then go back
into the more general community with better screening
and interventions.>>That’s a great idea. Thank you.>>Thank you, Jan. The third discussion is going
to be led by Dr. Kate Russell and she is an EIS Officer, an Epidemic Intelligence
Service Officer, at CDC and has done
a major amount of the planning for
this meeting, so.>>Okay, good morning. I will be presenting on the
discussions of group three, which focused on the outpatient
care and follow-up for infants with congenital Zika
virus infection but without apparent
abnormalities at birth. So the first thing that I wanted
to mention is that the majority of the information
that we know so far, which is already limited, about congenital Zika virus
infection has really focused on infants with microcephaly
or infants with other neurologic
manifestations that have been present at birth
and we really don’t know much yet about what manifestations
there might be for infants who are asymptomatic
at birth or really about the long-term affects of
congenital Zika virus infection. The things that we
can look at to sort of to help us determine what our
recommendations should be would be the affect of Zika virus, as Dr. Trevathan
mentioned this morning, on the actual neuro
progenitor cells and migration which would make us concerned that there could be neurologic
sequelae that develop over time. The other things that our
group sort of looked at to take into consideration
were the affects of other congenital infections that can lead to
delayed sequelae. So we do know that
congenital CMV, for example, can lead to delayed
hearing loss as well as other neurologic outcomes,
chorioretinitis, et cetera. Congenital toxoplasmosis,
congenital HIV can both lead to delayed neurologic sequelae. So even though our information about asymptomatic congenital
Zika virus infection is limited we can use this knowledge to help determine how we
might think about management and follow-up for infants without apparent
abnormalities at birth. So using that information
our group came up with these four
domains of care to focus on for these infants. And those were growth and
developmental screening, vision, hearing and family
support and engagement. So we recognize that
engagement of caregivers is key, particularly for
the early detection of developmental delay. Based on information
available to date early signs of delay associated with congenital Zika virus
infection may include feeding issues, hypo or hypertonicity,
inability to self-regulate, irritability, poor
visual tracking and, or lack of response
to voice or sounds. Any recommendations
for screening for developmental
delay should be in line with current AAP developmental
screening recommendations, which currently include
monitoring of infant’s development
at all well child visits, as well as standardized
screenings at ages nine, 18 and 24 months,
or for any caregiver or primary care provider
concerns. Our group discussed that recommendations should
emphasize the routine monitoring of growth, including head
circumference and development at each well child visit
and emphasize the use of clinical judgments
for referrals. Our group considered the
potential recommendation of using a standardized
screening tool, such as the Ages and Stages Questionnaire, prior to the recommended
nine month standard screening for infants with congenital
Zika virus infection. Referrals should be made based
on concerns or failed screenings and include referrals to
early intervention services, specialists, therapy
and supportive services. Information should be provided
to caregivers to enable them to monitor their child’s
development and inform them on resources available
if concerns arise. Finally, recommendations
should make use of existing infrastructure
in place for developmental screening
and support for children with developmental delay. In terms of vision screening
the affect congenital Zika virus infection on vision
outside of infants with associated brain
abnormalities, such as microcephaly,
is not currently known. Also, when developing
recommendations we need to consider that
subspecialty services, such as pediatric ophthalmology,
may not be easily accessible. We again discussed the
recommendations should stress adherence to current
recommendations for eye exams of infants at every well visit. We discussed whether or not
recommendations should be made for repeat comprehensive
eye exam by pediatric ophthalmologists
at six months of age for all infants versus
referral only if concerns arise. Again, assuming that these
infants have had a normal eye exam at birth. For hearing, again, the impact of congenital Zika virus
infection remains unknown, including the impact of
congenital Zika virus infection on hearing loss outside of
microcephaly, the possibility of progressive hearing loss, and whether associated
hearing loss may be central or peripheral. All infants should already be
receiving a newborn hearing screen and infants who fail this
screening should be referred. Our group discussed
whether or not infants who pass their initial newborn
hearing screen needed a repeat hearing screen at
six months of age or repeat screening
only if concerns arise. We also discussed what hearing
tests should be recommended, if any, keeping in mind that evoked response
testing is better for detecting central
hearing loss but audio-acoustic emissions
testing may be more accessible and that it can be done
in some pediatric offices. Finally, our group
recognized the need for both family support
and engagement. Caregivers are a critical
component, both in care delivery as well as early identification
of any delays or abnormalities. These families will be
uncertain about the diagnosis of congenital Zika virus
infection and to the impact on their child’s health. Recommendations should
focus on empowering families to be active participants
in their child’s care. This will require providing
caregivers with information on what to look for, as well as resources available
should they have concerns. Recommendations should utilize
systems currently in place to provide support and
resources to families. Our group suggests considering
development of a toolkit for primary care providers
to give to families to find the support they need. This toolkit would not
reinvent the wheel, rather gather currently
available resources such as those listed here. In summary, we felt that
there were four areas to focus recommendations
for infants with congenital Zika
virus infection but no apparent abnormalities
at birth. Growth and development, vision,
hearing, and family support. Any recommendations should
stress the importance of current guidelines for monitoring growth
and development. We should be utilizing systems
and resources currently in place to engage and empower
caregivers. Remaining questions include
the risks and benefits of additional developmental
vision and hearing screening, as well as determining how
best to provide information and resources to healthcare
providers and caregivers on what to look for and how
to address concerns. Thank you to all of the
group and participants who contributed to these slides. And are there any questions? [ Applause ]>>Comments or questions?>>I’ll just make a quick
comment and then a question. I think many of us, although
we may not have said it yet and this is a good
time to say it since Dr. Russell is presenting, but I think it’s been very
impressive how EIS has really been a key, taking a key role in
this response and that there’s so many great EIS Officers
involved from around the agency, it really is very refreshing and I know it’s made the
response a lot better. So thank you very much.>>Thank you. [ Applause ]>>So just a comment. So speakers throughout
the morning have talked about early intervention – oh, Don Bailey from International
– about the role of early intervention
in all of this. And I think it’s going to
be interesting to see how that plays out in
different states. So, as you know, we have
different criteria for getting into early intervention. You either have to have a
documented developmental delay, you have to have a condition
that is clearly known to result in a delay, like
Down’s Syndrome, and in some states
an at risk category. And so clearly for
babies who are born with Zika related microcephaly
they’re going to fit into the established
conditions criteria. But this group of babies is not. An so it’s going
to be interesting to see whether some states
decide this is a risk category, like low birth weight
or something like that, that would be tracked and
be immediately eligible for early intervention
or others might not be. And it gets back, harkens back
to the discussion about question about case definitions and
diagnosis and so forth. So there’s a lot of
socio-political dynamics that are going to occur here,
as well as the medical dynamics. It’ll be interesting to
see how that plays out.>>Yes. Thank you. And I think a lot of it is going
to fall on sort of families and primary caregivers to
be really very observant and be advocates for
these infants and sort of have a lower threshold for
sort of what they’re looking for because there
are so many unknowns. Thank you. Yes?>>So I’m just wondering, so this group would be those
mothers who either traveled to an area that was
endemic or assuming it comes to the United States, have
the physical findings, the mothers of Zika virus
infection during their pregnancy, they’re
tested positive, prenatal testing has been done
with ultrasound or whatever, and the baby looks totally fine. So any estimate of how
large that group would be or any indications …>>Great question.>>… for whether
the baby should go through further testing if there’s no abnormal
fetal ultrasound? And it sort of goes into the
congenital group one, but.>>Yes, and that’s something
we’re going to be talking about more and I think group
one will be talking about more, as well, is that sort
of initial evaluation. We would want to focus
any guidance on sort of long-term follow-up
and care on infants that have some evidence
for congenital Zika virus and infection, and
we’ve heard a lot about how much evidence
do you need and exactly how difficult the
interpretation of testing is. and I would say that based
on that I think we need to make guidance that’s focused on not just confirmed
congenital Zika virus infection, but also this sort of
probable, these probable cases that maybe have sort of
difficult to interpret testing. But we would want to sort of focus these longer term
recommendations on children that have some laboratory
evidence of congenital Zika
virus infection. As to predicting how
many, I’m not sure. Yes?>>I just, to respond to
that, putting on my AAP hat, developmental screening and
monitoring is recommended to all providers and it’s
EPSTD required. And since we don’t
know how common it is, we do know how common other
high risk conditions are. All children should be
screened and monitored.>>Yes, there are
many, many reasons to do developmental screening for these infants,
for all infants.>>[ Inaudible ] and the
guidelines are here to suport everything they have
said. [ inaudible ]
we’re kinda late on that.>>Yes. Dr, Maldonado.>>[ Inaudible ] related to that
what is the population and risk, and I think we know generally
how many people travel to countries that are affected. And I know that number is
going to go up, but if you calculate we can estimate how
many pregnant women are traveling into these areas I
think you would be a general ideal. I mean I would imagine that it
wouldn’t be in the millions, but there’s definitely
a fair number. But I think as Susan mentioned
if you follow a routine–>>Hi. Katie Beckman again. I think it’s really important to
consider the role of early care and education in the monitoring
piece for developmental and behavioral screening. Children spend 50, 60
hours a week in early care and education settings and
sometimes those providers are – I mean a lot of times
they’re an incredibly valuable intersection point. In addition, families build
trust with those providers. An so I think there’s a
really important intersection, especially since there are
children with developmental and behavioral vulnerabilities
who are not yet or may never be eligible
for early intervention and so the training of those
providers is really important in this.>>Yes, I agree.>>Yes, this is Camila at CDC. I want to piggyback on
what Katie was saying. So I was actually
thinking the same thing, but I also not only want
to include the early care and education providers
but I think one thing that I appreciated in
your presentation is that you are really
looking at existing systems that serve young children. Because I think when
you think about over 50% of children are seen in WIC
clinics, and I think kind of if we really can from a capacity building
standpoint make sure that the clinicians are aware of
what those existing systems are and that there’s an outreach
to WIC to those, help me grow, to whatever the
state capacity system is beyond the early intervention system, where these kids
may not be eligible but go to where they are. I appreciate that.>>Thank you.>>Yes, excellent presentation. And I think your emphasis
on getting the message out to the primary care
community is very important, but the lesson that I
experienced because I practiced in the early ’90s in Rhode
Island when screening for congenital newborn hearing
loss was instituted is classic management plans
in the community, Blue Cross Blue Shield,
et cetera, in the State of Rhode Island at that time
did not cover hearing aids, hearing aid follow-up,
a whole group of things. That situation has
been exacerbated, the states have gone to
Medicaid managed care carve outs and this access to essential
health services for individuals at risk is pretty
fragmented currently. And so your guidelines are most
helpful in getting this set. The second comment
I would make is that Dr. Bailey’s
eloquent statement that the microcephalic
children will be well served by early intervention, that
may be true in the State of North Carolina, it is
not true in many states. The states are confused at times with single established
conditions and they are confused what
to exactly do in their roles for care coordination
in EI for children, whether they have
spina bifida or CP or microcephaly or
Down’s Syndrome. And so I would just
highlight that. But most important neither EI
nor the community system are very good when there’s early
unilateral sensory neuro hearing loss. And our experience with
congenital CMV is that we have to track and manage these
kind of disorders and embedded in picking up abnormal hearing
loss should be a linkage to both the treatable
conditions that may not be Zika. And, again, I don’t
want to go into zebras, which are can children
have both congenital Zika and congenital CMV, I
don’t want to go there.>>Not make it more complicated.>>That’s both out there. Thank you.>>Great. Thank you very
much for your comments.>>Any more comments?>>I would just clarify that I
said that they would be eligible for early intervention, not that they would be getting
outstanding services.>>Hi. I’m Manda Hall, I’m the Title V MCH
Director from Texas. And I just think as
we’re thinking about that and we’re thinking
about systems in states that engaging the Title
V MCH and children with special healthcare
needs services programs across the United States
is going to be important as you’re looking at
these systems of care.

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