Aging with Cerebral Palsy: Health Outcomes and Management

[Dr. Michelle Meade] Hello, my name is Dr. Michelle Meade and I am the director of the IDEAL RRTC. Hello and welcome to this, our inaugural webinar, “Aging with Cerebral Palsy: Health Outcomes and Management.” The IDEAL RRTC stands for, “Investigating Disability factors and promoting Environmental Access for Healthy Living Rehabilitation Research and Training Center.” We are funded by the National Institute of Disability, Independent Living and Rehabilitation Research, within the Administration on Community Living in the U.S. Department of Health and Human Services. Our focus is to promote healthy
aging for people with long term physical disabilities. We conduct activities to
generate new research-based knowledge by first identifying the specific
interactions between, or combinations of, personal and environmental factors that
are associated with better health and functioning outcomes for individuals
with long-term physical disabilities. We then use that information to develop
evidence-based interventions and knowledge translation activities. This webinar series is part of those knowledge translation activities, and is being developed with the overall goal of enhancing the capacity of all
stakeholders to understand and promote healthy aging for adults with disabilities. With these webinars we will have quarterly sessions which will rotate between four different focus areas. First, research findings from our
Center, such as this seminar. Second, policy issues and updates relevant to disability and health issues. Third, clinical best practices for working with adults aging with physical disability. And fourth, sessions focused on research
methodology issues, resources and discussions. I want to thank our colleagues at ICPSR for hosting the series, and those at The Arc for working
with us to support and highlight this important topic. And with that I’m gonna turn it over to one of our partners and representatives from The Arc, Ms. Jenny Alexander. [Jenny Alexander] Good afternoon, my name is Jenny Alexander, and I am the Director of National Initiatives at The Arc of the United States. I am thrilled to be here today as a partner of the IDEAL RRTC. The mission of The Arc is to promote and protect the human rights of people with
intellectual and developmental disabilities, including people with cerebral palsy, and to actively support their full inclusion and participation over the course of their lives. We are the largest provider of advocacy, supports and services for people with IDD and their families, and our network of over 600 chapters serve more than one million people annually. Our network provides services across the lifespan, including to older adults who are experiencing the unique challenges of aging with IDD. And to the families that include older caregivers who may themselves be aging into disabilities. One of our most recent efforts to people with IDD who are aging is our Center for Future Planning. The Center for Future Planning provides reliable information and assistance to individuals with IDD, their family members and friends, professionals who support them, and other members of the community, on areas such as person-centered planning, decision-making, housing options and financial planning. You can find us online at One key area that the Center focuses on is planning around health care needs and health care decision-making as people age. Our webinar today discusses aging issues for adults with cerebral palsy, who are more likely to experience secondary conditions and negative health outcomes as they get older. Our expert panelists will share their research, as well as practical steps that adults with cerebral palsy, families, and advocates, and health care providers can take to help adults manage their health. We are thrilled to be here today and support this important topic. Without any further ado, we want to introduce our panelists and let them share their expertise with us. Dr. Mark Peterson is an Associate Professor in the University of Michigan Department of
Physical Medicine and Rehabilitation, and an active member at the University of
Michigan Neuroscience Graduate Program, the Institute for Healthcare Policy and Innovation, the Michigan Center on Demography of Aging, and the Michigan Institutes for Data Science. Dr. Heidi Haapala is a Clinical Assistant Professor in the Department of Physical Medicine and Rehabilitation at Michigan Medical
at the University of Michigan. She is also on staff as an attending physician with the Department of Physical Medicine and Rehabilitation at the Veterans Administration Medical Center in
Ann Arbor, Michigan. Mark and Heidi, thank you so much for joining us today. The floor is yours. [Heida Haapala] Thank you this is Heidi Haapala talking. So today we will be covering issues related to aging with cerebral
palsy. I’m a physician at the University who sees adults with cerebral
palsy and works in the adult cerebral palsy clinic. So many of the issues that
I have seen in clinic, we have translated into research and back into
clinic. Some of the issues we’ll talk about today are clinical insights
regarding obesity, functional loss, pain, and chronic disease. We’ll talk about
clinical management of age-related diseases. Research that we have done
pertaining to physical and psychological morbidity and multimorbidity in
cerebral palsy. And also address some health behaviors to improve the health
and prevent disease across the lifespan. And at the end, we will hopefully leave
some time for some questions. So when we talk about aging with disability we have
used to cerebral palsy as a model. Cerebral palsy is the most common
childhood-onset physical disability. It’s a primary condition that is
non-progressive as far as the original injury. The lifespan is normal for most
adults who are less affected. And at this point in time, they estimate there’s about
500,000 adults with cerebral palsy living in the United
States. As children with cerebral palsy become adults, they start to notice some
new problems. And in the clinic we have often seen this, patients will come in
and they’ll have concerns related to a functional decline at an early age, often
in their 20s, 30s, or 40s and they have questions about what might be causing
this decline. There may be some secondary factors such as decreased aerobic
capacity, decreased fitness, musculoskeletal dysfunction, such as
spasticity, muscle weakness, pain which is a very common cause for many of our
adults with cerebral palsy, and fatigue. In addition, there are mental health issues
and we have a lot of new research looking into mental health issues in
adults with cerebral palsy. What do adults with CP want to know? One of our
patients brought up that his “My biggest challenge is understanding what is
happening within my body. It appears that over the last couple of years my muscle
has deteriorated. I expected some deterioration but not quite this early. I
would like to know if this is reversible or how much it will worsen.” And this is a
question that we see in some form or another with many of our patients that
present to clinic. SB is a patient who is 25 years old. She is moderately affected
with cerebral palsy. She has had issues with struggling with obesity. On testing,
she has had issues with low bone density and high cholesterol. She uses a walker
for mobility and as a result, has had a lot of issues with musculoskeletal pain
in her shoulders, wrists, hips, and feet. She has had a lot of issues with fatigue
which has affected her ability to participate in everyday
activities and in the community. We have talked about power mobility in the
clinic and she feels like this might be a failure. Another example, the patient
that has shown up in clinic is somebody, a 43-year-old man, who has mildly
affected with GMFCS level 1 or a functional level where he walks without any
assistive device. He actually participated in military service and
made it into the Navy. He always had high fitness levels and worked out with the
SEALS. However, as he got older he noted that he had issues with fatigue and was
less able to participate. He had a normal BMI but when we looked at other
measurements, which we will discuss later, his waist circumference in relation to his hip circumference was high, which is an
indicator for risk for cardiovascular disease. He also had a high cholesterol
and his good cholesterol level, his HDL, was low. He also reported issues with
sleep. And this is a picture of a DEXA scan on one of our patients. The
interesting thing that we wanted to talk about here is, this is a patient who fits
in … at the bottom of the screen here you can see that we talked … this is the body
mass index. So he had a normal body mass index at the range of less than 25
but when we looked at his percent body fat he was in the 90th percentile for
his age. So despite the fact that he has a normal body mass index he had
issues with over fatness or adiposity. So some of the questions that we thought about in clinic and wanted to know more
about was, what are the issues that will raise the concerns and accelerate this
concern about aging and functional loss for our patients with cerebral palsy? So
Knowledge is Power. We wanted to talk about setting a
research agenda for cerebral palsy and looking at some of these longitudinal
studies focusing on outcomes of aging. Looking into what can we make
recommendations about regarding exercise, fitness, and risk of chronic
disease for people with cerebral palsy. [Mark Peterson] Thank You, Heidi. This is Mark Peterson. I always start this first slide because I think it shows basically how I feel about BMI.
Dr. Haapala just mentioned the fact that BMI may not be a good indicator for
individuals with CP. And it turns out that basically because it’s a one
compartment model that takes only into consideration height and body mass, we
know nothing about the patient’s or subject’s body composition. So very much
like a glacier, we see something on the surface it poorly represents what is
under the surface. And so starting to really advocate for the uptake of using
waist circumference or waist to hip ratio in our population. And two trendy terms,
which are probably no longer trendy, “Normal Weight Obesity” and “Metaboliclly
Healthy Obese”. Essentially we’re worried in our patient populations, is not
specific just to CP but I would posit that any frailty phenotype, is that
anyone who comes in at normal weight and yet has high adiposity is at high
risk for chronic disease, specifically cardiometabolic diseases. A study we
did a few years ago in older adults from the general population, shows this
quite nicely. The CDC drives around occasionally and
does, in the NHANES study, will do actual in-home or outside of the home
but right with a mobile unit that DEXA scan. And we can determine
somebody’s body composition on the basis of full-body DEXA. And so with this, you
can see in older adults, BMI of 30 is what we consider to be obese for
all intents and purposes. And if we use body composition or fat percentage, 35%
for women and 25% for men is considered to be elevated or increased adiposity
representing obesity. So basically, showing this slide is nothing to do with
cerebral palsy, it has to do with the fact that the diagnostic accuracy of BMI is
very very poor to begin with in the general older adult population. And it
stands to reason in my mind, and for most of us I think, we believe that BMI is a
poor metric to determine adiposity or obesity risk in the CP population. So
what happens under the surface isn’t just about adiposity and the
subcutaneous depot, but we know that with age there is decreases in muscle mass in
the general population and there’s also an increased adiposity deposition and
not just the subcutaneous depot but also the intramuscular depot. So fat
becomes infiltrated in the muscle itself which is a risk factor for cardio
metabolic disease, specifically insulin resistance. It happens as features of
also other disease processes like type 2 Diabetes, it happens very rapidly after
spinal cord injury, it happens in older adults who experienced sarcopenia and
sarcopenic obesity, and it happens with general obesity. As well as, very
important to this lecture and for our patients who are highly sedentary, it
happens with prolonged sedentary behavior. So it’s not just a factor of
aging and obesity. A study published in 2009, the first study published I should
say, was published in 2009 that looked at children with quadriplegic CP and found
that they had significantly increased intramuscular adipose tissue as compared
to typically developed matched peers. You can see by this imaging, on the top
is a child with cerebral palsy and then on the bottom is a matched control child.
And very clearly the muscle mass is a major problem. There’s much much smaller
muscle in the child with CP and much greater fat in the subcutaneous depot.
But there’s also, if you look after this depot has been stripped away,
there’s much more fat within the muscle itself both inter- and intramuscular fat.
So this puts a child at risk for again for early cardiometabolic disease and also these findings were found to be highly
associated with physical activity participation. So those individuals with
less activity had greater fat store in the muscle. A colleague of mine, Dr.
Daniel Whitney, did this work during graduate school and found not only does
fat emerge in children with cerebral palsy, these are highly functioning children with cerebral palsy, around in the muscle but also in the
bone marrow space. And so they were able to find, for the first time in this
patient population, that bone marrow was actually another depot with which fat
seems to be accumulating. And he is now at the University of Michigan working in
our group and doing some really excellent work to extend this, to try to
understand the mechanism of frailty in CP from the standpoint of adipose tissue.
Okay. But what we’re here to talk to you today about is what happens
in adults with cerebral palsy. And so what happens to children, adolescents, and
young adults with CP as they transition throughout adulthood, we hear from our
clinical colleagues is that they experience accelerated aging. They have
premature aging, they have premature frailty, they may be, again, at normal weight
obesity risk and they have very very highly exaggerated sedentariness. So for the last about ten years now, the focus of my work is to try
to understand the natural history of CP. And so everybody is aging and there’s
obviously a risk for obesity, so anything that affects individuals with CP from
the context of aging is of interest to me. And so we have to do a better job, I
feel and have really started to do that to improve the knowledge
base to what happens across the lifespan for individuals with CP and how can we
improve, not just the life expectancy but healthy life expectancy. So one of
the first studies that we did a few years back was to look at body
composition from the standpoint of imaging in adults with CP. And to want to look at both muscle and bone quality in adults
with cerebral palsy. And using computer tomography, we imaged individuals — if we
took images from individuals at the L4 level and were able to calculate density
and size of muscle and fat stores. And the picture on the left is a typically
developed individual and the picture on the right is a 54-year-old male with CP,
66 kilograms body mass. So by no means an obese individual, but you can
see the dark shaded region in the subcutaneous area but also the
intra-abdominal area is significantly greater for the man with CP. And
not only that but the muscle, the psoas muscle and the erector spinae muscle, much much smaller and also less dense. What we found essentially was that adults with CP had significantly less psoas
muscle cross-sectional area. They had lower muscle attenuation coefficient so
their muscles were filled, they had significantly greater fat store, so lower
density in muscle. And of course, to no surprise to anybody, they also had lower
density of bone. So there are trabecular and cortical bone densities were lower
than the individuals without CP. So the critical clinical question that we began
to ask, especially when we visit the American Academy of CP every year and our
colleagues around the country and world, was that given the documented loss or
absence of lean body mass both muscle and bone and increased storage of
visceral and muscle adipose tissue, is there an increased risk for chronic
disease? At the time, there was no studies on adults with CP from the standpoint of
health outcomes. Nobody really was doing much work in the area and there had been
not a single study published on that topic. And so we began to work with
health economists because there was very little data available, national or
international data, and there certainly wasn’t, at the time, any registry data
about health outcomes in individuals with CP. And so we looked at the Medical
Expenditure Panel Survey as a source of data, which is a really rich source of
data used mostly by health economists. But using ICD-9 codes we’re able to
categorize individuals and build a cohort of individuals, adults with CP. And
then also look at disease risk factors such as diabetes, asthma, hypertension,
other heart problems, stroke, emphysema, joint pain, and arthritis. And to no
surprise to us, I think it was a bit of a surprise just in general, there was a
large increased risk for all of these outcomes in the adults with CP as
compared to individuals without CP. So this was published a few years ago. And
that was one of our first studies that really, kind of, instigated this work
and, kind of, hopefully instigated work in others around to start looking at this
issue in their adult patient population. Some of the other significant covariance
of that study were, not surprisingly age, obesity, degree of physical disability, as
self-reported activities of daily living limitations, and then physical inactivity —
whether individuals met or did not meet recommendation for physical activity
participation. So we decided at the University of Michigan to build a cohort
of adults with CP based on our clinical registry. And using electronic medical
records we were able to do that to look at, to what extent is multimorbidity — the
presence of two or more chronic diseases — a problem in our patient population at
the University of Michigan? And we want to know: among middle-aged adults with CP,
is their issue with regard to chronic multimorbidity? Multimorbidity is, in
just the general population considered to be a major problem in the older adult
population, and so if there is indeed evidence of early aging in CP we would
expect to see a higher prevalence of multimorbidity in our middle-aged
adults with CP. So you can see the chronic conditions that we looked at
among multiple organ systems, essentially wanted to know if there was an issue
related to multimorbidity? And we did not have a control group. This is simply
looking at just adults with CP, to what extent is multimorbidity prevalent? And
what we found was that not only is there an issue of multimorbidity but it is
extremely highly prevalent in middle-aged adults with CP.
In the bar graph that you see, we have broken it out by both … two different things: GMFCS Is, IIs, and IIIs, so higher
functioning and GMFCS IVs and Vs, lower functioning. And then I also
categorize people on the basis of obesity. And yes, I did this based on BMI
so having just listed all the reasons why I don’t like BMI, it happens to be in
the medical record and so we used it for this standpoint in this particular study.
So BMI of less than 30 and more than 30, so non-obese and obese. And you can see
that the best-case scenario essentially, is being in GMFCS Is, IIs,
or IIIs and not obese. Multimorbidity was 53.6 percent prevalent. The worst-case scenario was individuals who were GMFCS IVs and
Vs and were obese, approached 80 percent prevalent multimorbidity risk.
So this is a really, it’s not just a minimal problem this is a very very
highly prevalent condition, a situation in middle-aged adults with CP. So at
that point, we had done nothing but cross sectional work and started to really
wonder if there was a way that we could leverage larger data to see if we could
do some longitudinal modeling of health outcomes. And so luckily enough we have
great connections with some data analysts at IHPI, here at
University of Michigan, and we were able to build a cohorts of adults with CP
using administrative data. And what we wanted to know was, is there age-related
effects for cardiometabolic disease in adults with CP? Really there’s only been one or two studies published on risk factors for
cardiometabolic disease but no longitudinal studies had been performed.
And so a couple of years ago we were able to publish this information and
looked at basically, age-related trends and cardiometabolic diseases in a
fairly large sample between the ages of … between the years 2000 and 2014, privately
insured individuals. So the inclusion criteria was that they had to have at
least three years of continuous enrollment from a single plan
and have an indexed diagnosis of CP. And we had about 2600 individuals, adults with CP that fit the inclusion criteria. And then you
can see we examine longitudinal trends of diabetes, this is incident diabetes,
hypercholesterolemia, hypertension, cardiac dysrhythmia, and atherosclerosis
and then looked at the effect of age on each of these outcomes. What we found was
that the cumulative incidence of all the diseases ranged between 6 and 34 percent at 3+ years. And from 11.6 for diabetes, 34.4 percent for hypercholesterolemia, almost 30 percent
for hypertension, and 13.2 percent for cardiac dysrhythmia, and 6
percent for atherosclerosis. Notably, importantly the 3+ year cumulative incidence for hypercholesterolemia and hypertension
are similar to what the lifetime risk would be, the lifetime risk would be for
the non-CP general population. So it’s extremely extremely highly incident
in our patient population and something that we should be very aware
of. You can see that age was also really important predictor. So the older
individuals, the shorter time to event for all outcomes: diabetes, hypertension,
hypercholesterolemia, cardiac dysrhythmia, atherosclerosis. So that led us again to
go back to our clinical sample that we have available here at the University of
Michigan to see if there is indeed actually a signal for early aging from
the standpoint of metabolic and chronic disease risk in the youngest adults with
CP. So essentially, if there’s going to be evidence for what we have been saying of
early aging, we would expect to see something like the chronic diseases that
are known to arise in older adulthood in younger adults, in the youngest adults.
And so we looked at noncommunicable diseases and multimorbidity in young
adults with CP and we had about 450 adults with CP between the ages of 30
and then 448 without CP in our Medical Center that we
compared to. And I won’t read off the list, but essentially 13 non-clinical diseases were evaluated across the musculoskeletal system, cardiometabolic system, and pulmonary system. And what we found was that young adults
with CP already see risk for these non- communicable diseases even before age of
30. So this bar graph simply shows a morbidity score. So adults with CP … oh adults
without CP are represented in white bar and then adults with CP everybody is, any
adult with CP is in the black bar. So this is zero morbidity, it means that they
have no chronic disease. And one would be they have one of the chronic diseases,
two would be two, three, and then of course more, greater than or four. And
what we see is … and then the gray, light gray and dark grey bars are GMFCS Is,
IIs, and IIIs and GMFCS IVs respectively. So adults with … young adults
with CP have much lower prevalence of having basically health, this is no
morbidity at all. And then as you can see, the morbidity score goes up for
adults with CP compared to the young adults without CP. So they’re very much a
evidence of early aging from the context of chronic disease risk
early in life. So is there evidence that individuals with CP have
psychological health disorders, mental health disorders or morbidity? The reason
why we started to look at this is that a lot of patients were coming into clinic
and complaining or we were hearing about parents who were concerned of
individual’s mental health outcomes being potentially something that they were
concerned of and yet not many people were studying this in this population.
There was some, there certainly have been studies on psychological depression,
anxiety in children with CP but nobody had really started to look at, aside from
you know small clinic visits but from a research context, how do individuals with
CP experience mental health across the lifespan? And just recently Dr. Dan Whitney published, led this paper looking at Prevalence of
Mental Health Disorders Among Adults With CP and essentially we looked at
across multiple categories of psychological health outcomes including
now: schizophrenia, mood affective disorders, anxiety disorders, behavioral
syndromes, disorders of adult personality, behavior, and alcohol and opioid-related
disorders and found that adults with cerebral palsy had a significantly
higher risk in odds of each of these categories. And we also found that adults
with CP and developmental disability which included: autism spectrum disorder,
epilepsy, and intellectual disorders had an even higher risk
for each of these outcomes. And so CP compared to general population without
CP, had much higher risk for mental health disorders but CP with the
neurodevelopmental disability seemed to amplify that risk and had a higher risk
for each of the outcomes both in men and women. So after that was published about
a week ago, two weeks ago I received this email: “I saw your article on
Depression and CP. I have a 24-year-old son with mild CP, depression, anxiety and
insomnia, I’m looking for someone who is knowledgeable in all these fields who
can help. I’ve called all over the country but there are very few resources
for adults and no one knows any psychiatrist who specializes in CP. Any
insight you could provide would be helpful.” The reason why I included this
email is it really struck a chord with me because you could take out the
depression, anxiety piece and plug in any of these other conditions that we’ve
been talking about and the same thing can be said. We have not done a good job
of raising awareness around these issues in adults with CP and other
disabilities. So I think it’s extremely important that we use some of the
information that we’ve gained from our research to not just improve public
awareness but also clinical awareness of these outcomes for their patients when
they’re coming to clinic. The last study that I’m going to highlight is one that
we just finished and is actually just being sent out for review, is we
wanted to look at longitudinal psychological morbidity in cerebral
palsy and spina bifida. And so as a part of the IDEAL RRTC,
we have begun to look at congenital disabilities across the lifespan,
acquired disabilities, and progressive disabilities. And the congenital
disabilities that we chose were cerebral palsy and spina bifida. And so the
objective of this study was to compare incidents and adjusted hazards for
psychological morbidity in adults living with and without CP or spina
bifida. We have a cohort of 15,000, just over 15,000 adults with cerebral palsy
or spina bifida and then a control cohort, 20 percent convenience sample of
individuals who are privately insured, just about two million. And we wanted to
know what before your incidence estimates and hazard ratios of common
psychological morbidities that come from adults who are privately insured in the
United States. And this is a busy slide but this is essentially an incidence of
each of these outcomes. So at the top you have any psychological morbidity and
then you can see below insomnia, adjustment disorders, anxiety disorders,
PTSD, mood disorders, personality disorders, and so on and so forth, and
then lastly, centralized pain. And what we’ve found that adults with cerebral palsy or
spina bifida were significantly higher risk for developing these in a four year
time horizon than individuals who do not have CP, spina bifida, or any other
neurologic disease. And so it really stands to reason that we should be very
very very keen to look at psychological health or screening for psychological
health in our populations that we see over time. And even after adjusting for
essentially, everything that could account for psychological morbidity, so
including demographic variables, comorbidity index, education, and income
on the far right model for the hazard ratios for each of these is extremely
significant. They are very very very high increased hazard for all but
alcohol-related disorders in our adults with CP and spina bifida. And so
it’s really important that we begin to think about not just what goes on below
the neck but also the psychological health of our populations. There’s lots
of papers that are ongoing collaboration across both domestic and international
colleagues for us here in Michigan but I wanted to put this into the slides so
that you could pull these papers if you were interested. And
then tons of work going on outside of our group that is being worked on
both, again both domestically and internationally that I wanted to make
sure that if you haven’t seen these papers, please take a look. They’re
outstanding pieces of work and also evidence that there is good work being
done now on adults with CP or lifespan healthcare for individuals with CP. So if
you want to take a look at those, I provided the titles. So Future Directions.
We must extend work to understand aging trajectories of other non-communicable
diseases, including, but not limited to: cancer, Dr. Whitney is doing a lot of
great work on CKD, also hypogonadism, frailty and fracture, chronic pain
phenotyping, polypharmacy, and then of course, sarcopenia, and osteoporosis
progression, ways that we can prevent those or stall that progression. So
quickly, I have very little time. Points of Intervention. I would direct you to a
recently published recommendation for exercise for individuals with CP. And we
have created a fact sheet which is available through American Academy of
Cerebral Palsy and Developmental Medicine which is free to download from
their website. I want to point out that the real importance between
distinguishing between exercise physiology and sedentary physiology, many
individuals with CP not only don’t do any exercise but they consume very high
volumes of sedentary behavior. So it’s extremely important that we not just
message that people need to exercise more but they also need to fragment
sedentary behavior. And this slide shows a meta-analysis that we
combined in that recommendation, that shows basically sedentary behavior is
determined by accelerometry, is most of the day, right. If you look at a
percentage, GMFCS Is even, most of the day is being consumed with
sedentariness, very little light physical activity and moderate to vigorous physical
activity. So if I’m looking at this information, as much as I want to
advocate for increasing moderate to vigorous physical activity as an
exercise physiologist, I have to say we’ve got to start here. We have to start with
changing sedentary behavior. [Haapala] So this is Dr. Haapala again. So now after you go through all the research, the question is: How do we distill all of this information into
something that you can take to your primary care provider, to your health
care practitioner, and discuss it within the confines of a relatively short
office visit with a doctor? Because there’s a lot that we’ve learned about,
and there’s a lot of information to think about, and a lot to get concerned
about, and how do you take that and do something about it? Especially in the
area of where we have very many practitioners that know very little about
aging with a disability. So first of all, I think it is very important to have a
primary care provider. If nothing else, they will do a baseline assessment and
age-appropriate screenings per national guidelines for all adults and this is
key. If you don’t have a primary care provider, as anyone but especially an adult
with a disability, that’s the first thing. The piece to add is to review with
your primary care doctor specific health issues that may need additional
evaluation due to your disability. Specialty care. Your cerebral palsy
specialist is usually not a primary care provider. They can provide specific care
related to CP or other health issues specifically as relates to mobility.
And they can also communicate recommendations with you and with your
primary care practitioner especially for things that may be at
higher risk if you have a developmental disability or mobility impairments. And
they can provide some guidance for health conditions that need more
evaluation. So some of the things that that should be addressed are:
activity recommendations, risk assessment for certain diseases such as heart
disease, diabetes, osteoporosis, and mental health issues, also pain and arthritis,
some assessment of activity and sleep and nutrition should be covered. And I’ll
go over a couple of these in a little more detail. So some of the things to
think about when you’re seeing your doctor is we saw a lot about the
problems with high cholesterol, diabetes, heart disease. All of those are very
common. So some of the things to bring to your doctor would be to talk about your
family history, your medical history, and your activity level. We know that sitting still for long periods of time is very
bad, that’s another risk that can be brought up. Your doctor should do basic
vital signs, blood pressure, height, weight. The one thing that would probably be
helpful to add that many primary care doctors or even specialists do not do is
a waist circumference. This is a measurement around your waist and you may
need to ask to have this done. Adding in a waist
circumference will give additional information. There are standard cut-offs
for the general population and if you’re above those cut-offs even if you have a
normal body mass index or that weight to height ratio, we know that there’s higher
risk for certain things. You may need to screen earlier with certain labs for
diabetes or cholesterol if you have additional risk factors, which as we saw
most, many people with cerebral palsy do. The other important area of concern is
bone health. Many people with cerebral
palsy have limited mobility and have difficulty walking or can’t walk at all
and this puts them at risk for having low bone density. So including assessment
of function: do you walk, do you do any physical activity,
do you do any weight-bearing activity, what about your calcium and vitamin D
intake? Those are questions that help to assess your risk for low bone density. If
you have any history of broken bones that is also important to bring to your
physician as some of those fractures might put you at higher risk for having …
might be an indicator of low bone density. You may benefit from advanced
screening including bone density per your specialist or primary care doctor.
And treatment for osteoporosis, if you do have little bone density, is best done
with a specialist who understands individuals with mobility impairments. So
some of the lifestyle changes, activity recommendations. Dr. Peterson brought up
some of his paper and to briefly summarize some of the recommendations in
that paper are increased your activity over time to help maintain a healthy
weight, weight-bearing is important to maintain muscle and bone, and encouraging
activity can help with gradually transitioning to a less sedentary
lifestyle. So the less you sit still and the more you do even a little bit
of movement the better. You can start small and gradually build any activity,
even a couple of minutes every hour is better than nothing.
Sleep is also very important. There are some more papers coming out about sleep,
adequate sleep is very important for overall health. And it’s also very
important for pain management and we start to see evidence of problems with
pain and fatigue for people with cerebral palsy. Sleep disorders are also
common so you may need to talk to your primary care doctor about sleep and to
decide if you have any problems with sleep such as sleep apnea that need a
sleep study. As far as nutrition, again healthy nutrition is important. There are
not really any recommendations at this point in time specific to cerebral palsy,
but it’s important to consider the research such as weight and body mass
guidelines for the general population may not be as applicable so you’ll have
to think about a healthy weight in a little bit different way versus what we
recommend for the typical population. So in summary,
individuals with cerebral palsy are at higher risk from many health conditions
including cardiovascular disease, diabetes, high blood pressure, and low
bone density. Factors that would make this a higher risk are: low activity, low
muscle mass, and extra fat mass. Adding measurements of waist circumference to
your body mass index measurement can help with assessing risk.
Discuss your issues with your primary care doctor and consider screening
earlier if you have some of these factors that we talked about. An
important addition is to include psychological assessments or discussion
of mental health issues with your doctor. As far as activity, the most
important thing to think about is that muscle is protective. The more muscle
you have the better it is for you to do … for your overall health as you age. So
decreasing the amount of time that you’re sitting or being sedentary, which
means not moving, by adding in short amounts of movement frequently is your
first step. Any weight bearing that you can do even if it’s supported
weight-bearing, depending on your functional level, to help with
strengthening and bone health is going to also be protective. And then slowly
progress to short bursts of exercise and making sure at the same time to
have adequate sleep and nutrition. [Dr. Peterson] We’d like to acknowledge a lot of colleagues, obviously our department chairman who has been very supportive. Dr. Edward
Hurwitz who has really been an incredible mentor for me and probably
also Dr. Haapala, and really as a pioneer and leader in this field. Obviously Dr.
Michelle Meade, who’s a PI of this grant and also extremely extremely valuable as a
mentor. And you can see the list of folks, I’m not going to go through everybody.
But we, I owe a lot of gratitude to a lot of colleagues and obviously, we want to
acknowledge our funding. And I think we have a sufficient amount of time. Oh
Heidi, can you click forward? We want to provide our email addresses. Hopefully, that’s okay with you, Heidi. [Dr. Haapala] Yes. (laughs) [Dr. Peterson] If you have specific
questions that you think of after the webinar is over, that you didn’t submit.
Please feel free to email me, I won’t speak for Dr. Haapala, but you can
certainly email me and I’d love to be able to continue the
conversation after. But I do think that we have a little bit of time for questions.
[Dr. Meade] And just one other thing that tomorrow or in a day or two you will be
sent around an evaluation link which will be another opportunity to provide,
ask more questions, ask for follow-up. That will also have the website for the RRTC
which will have both this webinar as well as other resources and materials
that may be of help to you. And with that, I believe that Dory and Jenny
have been gathering questions. And so if they want to go back, maybe can go back
to the final recommendation slide that you put ready. But let’s hear some of the
questions that must have been being come up with this wealth of information
that we’ve gotten from Dr. Haapala and Dr. Peterson. [Jenny] Thank you, Mark and Heidi,
again for the presentation. As I reminder to those listening, we will be sending out
that copy of the webinar recording, the slides, and that feedback survey in the
next day or two after the webinar. And we will send out that longer summary and
tips later. We have had several questions from the audience. We are going to get
through as many as we can now. If there are questions that we don’t get through,
we will address them in some of the follow-up emails that we’ll provide in
the next couple of weeks. So the first question from our audience
was: If we could briefly differentiate the indicators of cerebral palsy versus
multiple sclerosis? [Dr. Haapala] So cerebral palsy is a condition that occurs at or around the
time of birth. So multiple sclerosis is an adult-onset condition. There
are similar issues that people with cerebral palsy and multiple sclerosis can
face including muscle spasticity and difficulties with mobility but
one of them is an adult-onset disability that is quite variable and the other one
is childhood-onset. [Jenny] Thank you. We also had somebody who asked a question about, “What
is the physiological reason for why spasticity increases during the
aging process for people with CP?” [Dr. Haapala] So we think some of the reasons that
spasticity worsens is as muscles get weak sometimes they also get tighter and
more spastic. One of the best things that I often recommend to patients as part of
their spasticity treatment is strengthening often done first in
conjunction with a physical therapist as it needs to be done under a controlled
setting to start. But I have had very good results for some of my patients if
they’re able to do strengthening to do that with physical therapy. So that may
be one of the main reasons. I’m not sure if that answers the question. [Jenny] And if you
were the person who asked in a question box and you have a clarification, please
feel free to ask that again as a question and we’ll make sure that the
questions get to the IDEAL RRTC and the presenters. I’m going to go ahead and
move on because we have many more questions. We had a question from a
person who says, “They work out regularly but they lost muscle mass due to a
delayed c-spine stenosis diagnosis and they said will this mass return with
protein and exercise?” [Dr. Haapala] It’s difficult to answer without seeing somebody but we do
know that rehabilitation and physical therapy can help build strength again
after an injury. I think some of the most difficult things with cerebral palsy
is once you lose function or are down for surgery, many of my patients have a
hard time building their strength back up and it takes longer. But I’ve
definitely seen that with time and the appropriate rest, not overdoing
it also, building strength is possible. [Dr. Peterson] Yeah. And I would just add to that
that physical activity in general is extremely important for all populations
but especially for individuals with CP during the aging process. We know that
strengthening exercise, so doing resistance training, is not just
beneficial for preservation of muscle strength and muscle hypertrophy, which is
size of muscle or muscle mass, but it also has a really potent metabolic
stimulus to the muscle as well. aAd so for those individuals who either can’t
or don’t want to do repetitive aerobic physical activity, strength training is
it really is a very very very powerful modality of exercise that can lead to
a vast array of improved health outcomes, not just function. So often
people will talk about the functional ramifications of cerebral palsy and how
strength training can help with improving function. But again as a
physiologist, I really would like to also posit that strength training is very
important for metabolic health. The muscle organ system is the largest organ
in our bodies and if we think about it like that and we can stimulate it
directly doing strength training we could probably have the most potent
benefit so long as an individual also has a healthy body mass. It’s a really
potent stimulus to improve metabolic health of the overall system. So strength
training can certainly serve all purposes in that regard. [Jenny] Thank you.
We had a question about the research. One of the viewers noted that it seems
like a lot of the research was focusing on privately insured patients in the
studies and they were asking why that was. And then noted that a large
percentage of people with disabilities have only Medicaid or Medicare. [Dr. Peterson] Yeah, so
it’s a really, actually a really good question and one that I was hoping that
somebody might ask. So because of the limitations for the constraints for the
webinar, we didn’t have a lot of time to dive into each of the individual studies.
First, we are currently working on studies using both Medicare and Medicaid
data but our original funding was to look at privately insured individuals and so
that’s how we started our work. The MEPS work that I originally published is
publicly available and it’s all individuals, whether or not they have any
kind of insurance. And so the most recent studies in the last three years have all
been privately insured. And so one could assume that if you’re studying
individuals who have private insurance, they may or may not be but they may be
higher functioning, healthier segments of the population. May not be but we have to …
we have to start looking at that in real earnest and that’s something
that we’re currently working on so that we can bolster the population
representativeness of our research. [Dr. Meade] I think, just to add to that, the
idea that often with the Medicare and Medicaid population, they have less
resources in general. And so when we begin to think about the limitations of
just using a private insurance sample, you probably think that those are
individuals who are healthier, that they may have access to better nutrition,
more financial resources, or education as associated with that. And that the
outcomes when the research is done with the Medicaid population and
Medicare will likely show even greater extent of chronic conditions. [Dr. Peterson] Yeah, so
in other words, our estimates may be conservative, frankly. They may be very
conservative estimates. [Jenny] Thank you. We also got a question where people say that the
recommendations are great, but they know there appears to be a shortage of
CP knowledgeable providers. Have you given on how to build capacity for
physicians to be more knowledgeable on this front? [Dr. Meade] I think this is an ongoing
issue with, in fact, providers working with individuals with developmental
disabilities beyond pediatric providers, individuals generally who are
comfortable working with individuals with disabilities out of specialty areas.
And so this is, I think, an ongoing focus both of the RRTC and where the field in
general needs to go. We want to enhance knowledge across the continuum. These are
factors that are integrated into the Affordable Care Act but I think they’re
just beginning to get enacted. In the future, we hope to have CE courses that
are direct to providers. Also programs like the [inaudible] program which
providers get training and experience working with individuals with CP are
important but currently are threatened by federal budget cuts. And so while
there are now more awareness of the importance of education capacity
building for healthcare providers, there’s also threats to the actual
enactment of those processes. And I don’t know, Heidi, what you’ve seen in
the field in terms of this. [Dr. Haapala] Yeah, I think it’s a valid concern. I do feel like med
peds providers, so physicians who were trained in both internal medicine and
pediatrics, are often the most open and least affected or worried about somebody
not knowing what you do with somebody with a disability because they are more
familiar taking care of children with chronic health conditions and as they
transition into adulthood. So sometimes I make recommendations for my patients to
look for, like, an internist who also has a pediatric background like a med peds
person. But yes, it is an area where we still have a lot of work to do. [Dr. Peterson] Yeah I,
just to follow up with that, I think that raising awareness, not just our own
choir of people who work and, you know, rehab populations, our physician
colleagues, our researchers, other researchers, raising awareness and that
audience is one thing. We have to raise awareness, public awareness and
clinical awareness, of people who do not necessarily always see patients who have
cerebral palsy. So that’s really important and I think
also that has some impact on potentially public policy in healthcare
infrastructure for people with CP across the lifespan. I recently got a review
from a journal that said, “Why are you studying adults with CP? This is a
pediatric condition.” So to me, there’s a really huge disconnect between, you know,
what we’re doing and trying to accomplish and what a lot of people
are doing out there. So I think the public awareness needs to be improved,
clinical awareness needs to be improved and that will really
bolster, I think, the healthcare infrastructure for people with CP in the
future. [Jenny] Thank you so much. We had a couple questions around people who, for reasons
of you know access to doctors or not really finding a very knowledgeable
doctor, may have fallen out of the practice of going to the doctor or may
resist going to a doctor to address any concerns they have as they age.
Do you have any recommendations that you want to offer around this? [Dr. Haapala] I think just
trying to get recommendations from family members if
they are a good primary … you need a primary care doctor first. And trying
to find somebody who will at least listen to you and who you feel
comfortable talking to is the first step. I think if you can communicate with your
physician and they’re open, that will make the biggest difference. [Dr. Meade] And I’ve
heard that in working with other individuals with other disabilities, that
sometimes it’s … finding a primary care provider, a health care provider who will
learn even if they don’t have that base knowledge there are other expertise they
can find if they’re willing to listen. But there is a concern by folks about
how much time health care providers may any to invest to get up to speed. So
sometimes other ancillary providers and their clinicians, physician assistants
may have more time to establish the relationship, listen to
everything that’s going on, and then partner with the physician to
find the appropriate treatment. [Dr. Haapala] And one of the things I wanted to just bring up
is we do have a handout with some resources that will be sent out … [Dr. Meade] … with the evaluation survey. [Dr. Haapala] … and so that would be another resource that patients can bring to some
of their providers as far as … There’s fact sheets like that are one to three
pages long with summaries for certain conditions and there are links to some
of those and that may be a good place to start the conversation. [Dr. Meade] I think we’re
just about out of time with this webinar. But once again, we hope that we’ve raised
your awareness about the wealth of challenges that are out there. The
wealth of research going on and the topic and encourage you to continue to
advocate for ongoing attention to issues of aging for individuals with cerebral
palsy about the need for interventions, practical advice and training for
healthcare providers. We welcome your feedback both on the survey and through
email, and look forward to continued conversation about this area. [Jenny] Thank you so much to all of the
presenters. Thank you to Mark and Heidi for sharing their work, tips, and
answering questions today. And thank you on behalf of everybody at the IDEAL RRTC
and the University of Michigan for attending the webinar today. We hope we
will see you all soon on our next webinar. And we hope you have a wonderful day.

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