2005_CHOP_AR_Mercedes_stories[1]

From Here You
Can See Tomorrow …
For this group of researcher-advocates, the goal is not just
providing great care, it’s making sure children receive it.
For children, healthcare quality is directly related to the quality
or efficiency of the systems that care for them: hospitals, physician
practices, insurance providers, governments, community health
centers, foster care programs, schools and more.
Within these systems, many factors come into play: Does the
child have health insurance? A physician? Do teachers understand
his needs? Is he at risk for serious illness? Are individuals and
systems coordinating his care? Staff at Children’s Hospital see
firsthand how these factors profoundly influence children’s
health — and a unique multidisciplinary team is working to
improve them for millions of children nationwide.
Patient Care Research Education Advocacy
Action figures: Pediatric Generalist Research Group
members, including Evaline Alessandrini, M.D.,
M.S.C.E., Susmita Pati, M.D., M.P.H., and Ron
Keren, M.D., M.P.H., tackle tough questions about
how society can improve healthcare delivery for children.
11CHOP Celebrates 150 Years Hope Lives Here
10
TheChildren’sHospitalofPhiladelphia

Powerful Partnerships
In 2000, Louis Bell, M.D., chief of the Division of
General Pediatrics, and Steven M. Altschuler, M.D.,
then chair of the Department of Pediatrics (now chief
executive officer), recognized that, as a national leader
in pediatrics, CHOP was uniquely positioned to
advocate for children’s health issues. Five physicians
with advanced research training took on a mission: to
advance children’s healthcare by researching methods
to improve its delivery. The Pediatric Generalist
Research Group (PGRG) was born.
In 2003, the group partnered with researchers from
the Divisions of Emergency Medicine and Infectious
Diseases. Today, with support from Alan Cohen,
M.D., chair of the Department of Pediatrics and
physician-in-chief, the 10-member interdisciplinary
team focuses on issues such as cost, quality,
accessibility, delivery, financing and outcomes.
The group’s research is having widespread impact.
Ron Keren, M.D., M.P.H., and colleagues found that
hospitalized children with neurological and neuromuscular
disorders are at higher risk of developing serious
complications from influenza and should be
vaccinated. These findings have been incorporated into
national guidelines. Evaline Alessandrini, M.D.,
M.S.C.E., is developing guidelines to identify children
who are less likely to receive immunizations or
adequate primary care, and investigating interventions
that will ultimately benefit children across the nation.
“This research educates everyone
who cares for children. What we
develop here transfers to others
across the country.”
Joe Zorc, M.D.
Many Perspectives, a Shared Goal
While effecting major change in the healthcare
system may seem a David and Goliath undertaking,
the collective efforts of the PGRG are creating
sustained, measurable impact. Other team members
and their areas of focus include:
Susan Coffin, M.D., M.P.H., who examines
occurrence and cause of infections acquired by
pediatric patients in healthcare settings.
Chris Feudtner, M.D., Ph.D., M.P.H., who
examines how hospitals can better support
terminally ill patients and their families.
James P. Guevara, M.D., M.P.H., who looks for
methods to better coordinate care of children with
attention deficit hyperactivity disorder.
Susmita Pati, M.D., M.P.H., who studies the
impact of policy on healthcare access for
underserved children and families.
Samir Shah, M.D., Infectious Diseases and
General Pediatrics, who develops guidelines for
evaluating and treating potentially dangerous
fever in post-surgical patients with central
venous catheters.
Theoklis Zaoutis, M.D., who works to better
define the scope of antibiotic-resistant bacteria
and improve prevention efforts.
Joe Zorc, M.D., who uses Emergency
Department visits to educate families about
asthma management at home, and thus reduce
repeat hospital visits.
A Voice for Children
David Rubin, M.D., M.S.C.E., PGRG member and
director of research and policy for Safe Place: The
Center for Child Protection and Health at CHOP, says
his role is part physician-researcher, part advocate.
PGRG members aim to translate research findings into
real-world improvements in healthcare delivery, policy,
programs and funding to better serve vulnerable
children. Rubin’s analysis of the impact of Medicaid
proposals on children in foster care was recently
presented in Washington, D.C.
Learning to Have an Impact
CHOP offers a two-year Pediatric Generalist
Research Fellowship, funded by the Health
Services and Resource Administration (HSRA), for
pediatricians who want to improve the healthcare
delivery system for children. The fellowship
prepares physicians to work as independent
researchers in academics, government, healthcare
systems, foundations or industry.
“Children’s Hospital is the place
that should be answering these healthcare
questions. It’s our responsibility. We have
the collective brainpower.”
Evaline Alessandrini, M.D., M.S.C.E.
12

What a feeling: knowing she improves the Hospital
experience for patients and families puts bounce in the
step of Youth Advisory Council member Allyssa Loftus,
a Children’s Hospital patient since birth.
Patients Write Prescription for Progress
There are a lot of experts at Children’s Hospital. Cancer experts.
Surgical experts. Research experts. But the experts on quality of life are
the patients themselves.
Recognizing it needed to hear what kids had to say, the Hospital founded
the Youth Advisory Council (YAC) in 1999. YAC is comprised of patients
with several inpatient experiences and their siblings, ages 10 to 18.
Meeting monthly, YAC provides an insider perspective that shapes patient
care and services in ways others could not. Members advise Hospital
leadership on important issues like patient-staff communication, facility
renovations, food quality, social activities and even inpatient pajamas.
Though their mission centers around improving policies and programs,
YAC also creates a sense of security for patients and families, a way for
kids to retain dignity and have input about their care.
Change Agents
Allyssa Loftus, age
12, and Grace
McDevitt, age 13,
are two of 26 YAC
members who meet
monthly to provide
Hospital leadership
with kid-friendly
ideas and guidance.
16

“YAC works because
we work — members
cooperate and hear each
other out. It feels good
knowing that we’re
changing things for
ourselves and for other
patients.”
Kyle Smith, age 16,
YAC member
Fashion Forward
Now on center stage: the pajama project. YAC members held a fun-filled
fashion show for the Hospital’s pajama vendor, providing insight about
what helps patients sleep tight — comfortable, fashionable and user-friendly
pajamas. YAC supplemented the show with discussion, sketches and even a
pajama prototype sewn by a member. “The pajamas we have now look like a
potato sack — they are ugly and rough,” says Matthew Corrado-Ellengold,
age 16. Adds Colette Bleistine, also 16, “If you look good, you’ll feel better.”
Healthy Communication
Recognizing an opportunity to educate
physicians on how to communicate with
adolescents in a more direct and age-
appropriate way, YAC members wrote,
produced and performed in an original
video, “Yakkity YAC, We Talk Back.” Talk
to us, not around us, is the message of the
video, which has been so helpful that many
departments include it in staff orientation.
Architects of New Ideas
Despite their illnesses, patients worry about their families.
Will mom and dad have a place to sleep? Can they e-mail
their employer from the Hospital? YAC voiced these and other
concerns to architects of the Hospital’s expansion project, who
incorporated solutions into design. Among the results: computer
access and comfortable sleeping space for families, phones outside
patient rooms and separately lit areas within the rooms.
Her Song Plays On
Kelsey Gallagher
June 14, 1987 – May 6, 2005
Kelsey Gallagher was a vibrant, graceful
and articulate young woman. A founding
member of YAC, Kelsey quickly
emerged as a leader. She took her YAC
role seriously, well aware of the impact
she could have, but she always managed
to have fun. A music aficionado with an
extensive collection, she loved to deejay
at YAC parties. Outgoing Kelsey served
as YAC’s public face, speaking at events,
fundraisers and meetings. As “Dr.
Sunshine” in the YAC video, Kelsey
had the audience laughing —
and listening.
Kelsey connected with each person she
met on a very personal level. She shared
her love of music, drama and painting.
Her sensitivity prompted her to
befriend new or shy YAC members,
making them feel needed and welcome.
A true inspiration, Kelsey’s legacy will
live on in the hearts of family and
friends and the lasting impact she made
through YAC.
“YAC is the ultimate consumer group.
When they advise the Hospital, their advice
is taken seriously. It is very empowering for
them to know they have an impact.”
Steve Wilmot, M.S.W., manager, Musculoskeletal Center,
one of six volunteer staff members who guide YAC
Tingling Taste Buds
Two dreaded words: hospital
food. But not at Children’s
Hospital, where YAC members
inspire the creation of fabulous
fare. With the Hospital’s Nutrition
Services Department, they developed a patient food survey.
Patients placed their orders. They wanted more choices in foods
and mealtimes, weekend cafeteria hours and an increase in the
value of cafeteria food vouchers. Thanks to YAC, all of their
orders were filled.
18

These activities are part of an innovative
national, multi-site research study, led at
Children’s Hospital by Melissa A. Alderfer,
Ph.D., psychologist in the Division of
Oncology and Department of Psychology.
The HOBIT (Holistic Behavioral
Intervention) study is testing the effects of
humor in reducing physical and emotional
stress in patients who receive stem cell or
bone marrow transplants and their parents.
The transplants, used to treat patients with
cancer and other serious illnesses, are
extremely difficult, but without them, more
than half these children could die.
The Children’s Hospital of Philadelphia
is a leader in developing treatments for
childhood cancers, with dramatically
increased survival rates to show for it. But
the Hospital’s pioneering work goes beyond
treating just the illness. Staff seek equally
innovative ways to care for the whole
child, and family.
In HOBIT, a group of randomly assigned
patients receives regular doses of humor
therapy and massage therapy. In a second
group, parents receive massage therapy
and relaxation training, in addition to the
patients’ therapy. A third study group does
not participate in humor therapy but, like
all CHOP patients, has access to the
Hospital’s extensive support network.
“We believe that humor can have many
positive effects. It lightens mood and can
decrease distress and anxiety. It may also
have health benefits. We are testing that
possibility,” says Alderfer.
Penny Pierce, mother of a 16-year-old study
participant, is enthusiastic: “Humor has
helped Jonathan recover more quickly this
time. You have to laugh your way through
this or it can devastate you. The study
helped him do that. It put the light back
in Jonathan’s eyes.”
A humongous spider perches on the head of a teenager who
awaits his unsuspecting nurse. A physician squirts a water gun as
a patient takes cover. A silly movie tickles a little girl’s funny bone.
This isn’t just good fun — it’s good science.
Did you hear the one about the
breakthrough research study?
Beware of patient: Jonathan employs a little humor
therapy on his nurse, Ginny Guzikowski, R.N., C.R.N.P.,
Blood and Bone Marrow Transplant Program.
Spider man: Jonathan Pierce (with
eight-legged friend) travels to CHOP
from Pittsburgh to receive cutting-edge
stem cell transplantation therapy. He
participated in HOBIT, the first national
study to test humor therapy in children.
“A transplant is not fun.
You’ve got to laugh. It helps
you get through this.”
Jonathan Pierce, transplant patient
20

Car accidents are the
leading cause of death
of children over age 1
in the United States.
Children‘s Hospital and
its partners are leading
the way in research
and design of child car
seats and restraint
systems that save lives.
30

Anatomy of a Crash
TraumaLink has expanded its crash investigation
team, adding biomechanical engineers who
provide an unprecedented capability to analyze
accidents and determine what mechanisms
caused injuries. The multidisciplinary team also
includes physicians, nurses, computational
engineers, statisticians and behavioralists. Each
part of the team examines accident data from its
own expert perspective, then together, the team
“connects the dots” to create more effective safety
solutions.
One such solution: the world’s first accurate
child-size crash test dummy abdomen, now being
developed by TraumaLink. Currently, seat-belt
performance is regulated only on adult-size crash
dummies. Adult-tailored seat belts can contribute
to severe injuries to children’s abdomens and
lumbar spine areas, like those Kyle sustained,
known as “seat-belt syndrome.”
Kristy Arbogast, Ph.D., associate director of field
engineering, is leading the charge to develop the
accurate child-size test dummy abdomen. Using
information collected by the crash investigation
team, her TraumaLink colleagues build
multi-dimensional computer images to replicate
the true dimensions of a child and guide
construction of the model. The group expects
to have a prototype by spring 2006. The dummy
will ultimately help manufacturers produce safer
restraints for children.
Jessica Steps Jermakian, D.Sc., project manager
for field engineering, notes: “Working with
TraumaLink is an experience unmatched
anywhere because we really effect change — we
focus on getting the information to those who
can use it to improve safety.”
Some good will come of this: TraumaLink team members
Jessica Steps Jermakian, D.Sc., project manager for field
engineering, and Shresta Mari-Gowda, M.S., biomechanical
engineer, examine an accident scene for clues about how
injuries to child passengers occurred. Families whose children
are treated at CHOP after an accident often enroll in the
study. Other crashes are submitted by State Farm, creating a
large pool of accident data.
TraumaLink advocacy efforts have
helped to enact laws requiring
booster seats in 33 states (five in
2005 alone) and two federal laws.
Engineering a Safer Ride for Children
John and Carol chose a five-star safety-rated car.
They made sure their 9-year-old son, Kyle, rode
in the back seat and, without fail, wore a seat belt.
But when an SUV hit their car, Kyle sustained
severe abdominal injuries, a perforated intestine
and internal bleeding.
Although the seat belt probably saved Kyle’s life, it
also contributed to his injuries, a cost-benefit ratio
no parent wants to contemplate — nor The
Children’s Hospital of Philadelphia.
TraumaLink, Children’s Hospital’s comprehensive
pediatric trauma research, education and advocacy
center, works with partners from medicine,
business, manufacturing and government to
improve motor vehicle safety for children, and
ensure that devices like car seats, air bags and seat
belts will offer greater protection.
Led by founder/co-scientific director Flaura K.
Winston, M.D., Ph.D., a pediatrician, engineer
and researcher, TraumaLink operates the Partners
for Child Passenger Safety program (PCPS), a
joint endeavor with State Farm®. The program is
conducting the world’s largest study of how and
why children are injured in motor vehicle crashes.
A smarter dummy: children aged 4
to 8 are most likely to sustain serious
abdominal injuries from adult seat belts.
This computer-aided design, formulated
using data from real children, will help
TraumaLink create the world’s first
accurate child-size dummy abdomen,
which will lead to production of
better seat belts and safety devices.
“Every year, 1.5 million children
are in crashes, so creating safer car
restraint systems has an impact
almost as profound as developing
a vaccine.”
Suzanne Hill, TraumaLink
manager, outreach and advocacy
Meeting of the minds: Dennis R. Durbin, M.D.,
M.S.C.E., emergency physician and TraumaLink
co-scientific director, leads the crash investigation
team as they examine a scan of a child’s injuries, the
car seat, crash investigation data, police reports and
driver interviews to recreate the accident.
Biomechanical engineers then analyze the data to
determine what mechanisms caused the injury and
computational engineers create computer models that
simulate the crash so other scenarios can be explored.
32

An innovative Children’s Hospital program helped Jennifer
and her family experience the end of her life on their own
terms. CHOP-trained hospice workers visited daily to care
for her medical needs. Jennifer’s parents were given a beeper
that provided a 24-hour link to her CHOP team. Her little
brother received counseling and school support. After three
weeks in the comfort of home, with grace, dignity and family
surrounding her, Jennifer died.
Children’s Hospital treats the sickest of the sick and the
most medically complex cases. Despite advances in fighting
pediatric disease, many pioneered here, not all children
survive. The Hospital’s commitment to those facing the end
of life is embodied in the Pediatric Advanced Care Team,
which provides emotional support, counseling, a sense of
community and more. It extends to patients’ families, helping
them cope with impending loss.
Jennifer was 13, bright, funny —
and dying. In her hospital bed,
Jennifer accepted that her doctors
could do no more and came to a
decision. Her cancer wasn’t going
anywhere — but she was. She was
going home.
The End of a Journey
End-of-life, or palliative, care has long been
integral at CHOP, but two years ago, a group of
physicians, nurses, social workers, child life staff
and administrators developed a comprehensive
Hospital-wide program.
One of the first and largest in the nation, its
multidisciplinary team includes physicians,
nurse coordinators, a social worker, an art
therapist, a bereavement coordinator, chaplains
and psychologists. Their work reaches far beyond
patient care. Nurse coordinators Gina Santucci,
R.N., and Jeannie Carroll, R.N., train
community-based hospice workers. Chris
Feudtner, M.D., Ph.D., M.P.H., Division of
General Pediatrics, is using research to enhance
support networks for children and families. A
palliative care residency rotation has also been
added at CHOP.
“We support families in whatever way they
choose,” says Tammy I. Kang, M.D., the
program’s medical director. “We bring the
family here and care for their needs so they can
concentrate on their child, or the child can go
home. Children associate home with normal,
happy times.” The team is also there for families
long after the child’s death, as they work through
the grieving process.
“A cure is what we all want,” says Carolyn Long,
M.S.W. “But when we can’t cure them, at least
we can comfort them.”
“If our patients and families have
to go through this, they deserve a
team that is going to walk with them
down this road.”
Carolyn Long, M.S.W.
“CHOP’s research is helping pediatric
hospitals across the country define the
need for palliative care more clearly
and advocate for programs. Research
helps those who care for children take
a stand that says we won’t abandon
these children. When the disease is
more powerful than our cures, we
won’t turn away.”
Chris Feudtner, M.D., Ph.D., M.P.H.
Walking With Love
34

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