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PHN
Publications |
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2005 |
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The
Pediatric Heart Network: A Primer for the Conduct of Multicenter
Studies
in Children with Congenital and Acquired Heart Disease
(PDF)
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L.
Mahony, L.A. Sleeper, P.A.W. Anderson, W.M. Gersony, B.W.
McCrindle, L.L. Minich, J.W. Newburger, J.P. Saul, V.L.
Vetter and G.D. Pearson
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| Doctors
and nurses have many ways to help children with heart
disease, and the outlook for such children has improved
a lot over the last 50 years. Most of the care children
with heart disease receive is still based on expert opinion,
small studies from one hospital, or experiences from adults
with heart disease. Few treatments are backed up by proof
from systematic clinical research, because many barriers
exist to conducting such complex studies. However, continued
improvements in life span, health problems, and quality
of life require these studies.
The Pediatric
Heart Network (PHN) was set up in 2001 by the National
Heart, Lung, and Blood Institute (NHLBI) of the NIH
to help doctors and nurses design and carry out good
clinical studies so that children with heart disease
can receive the best care possible. The purposes of
this article are to describe the makeup and tasks of
the PHN, to review the ongoing studies and to talk about
current challenges and opportunities.
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Impact
of Cardiac Rehabilitation on the Exercise Function of
Children
With
Serious Congenital Heart Disease (PDF)
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Jonathan
Rhodes, Tracy J. Curran, Laurel Camil, Nicole Rabideau,
David R. Fulton, Naomi S. Gauthier, Kimberlee Gauvreau
and Kathy J. Jenkins
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| Children
with congenital heart disease (CHD) often can’t
exercise as well as their friends. Part of this may be
due to their heart defects, and part may be that they
may not be very physically active. This article discusses
a cardiac rehabilitation program planned especially for
children to see if they could improve their ability to
exercise safely. Nineteen patients with CHD were referred
for exercise testing and sixteen patients completed the
program. Improvements were found in 15 of 16 patients
and no patient had any heart problems from the exercise.
This article discusses how a creative cardiac rehabilitation
program may improve the ability of children with CHD to
exercise. You might want to discuss the findings in this
article with your child’s cardiologist. |
2006
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Relationship
of Patient and Medical Characteristics to Health Status
in Children
and Adolescents After the Fontan Procedure (PDF)
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Brian
W. McCrindle, Richard V. Williams, Paul D. Mitchell, Daphne
T. Hsu, Stephen M. Paridon, Andrew M. Atz, Jennifer S.
Li, Jane W. Newburger and for the Pediatric Heart Network
Investigators
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| Children,
whose hearts are formed with only one pumping chamber,
usually have the Fontan procedure after one or two other
surgeries in early childhood. In the Pediatric Heart Network
study of Fontan survivors 6 to 18 years of age, parents
answered questions about their child’s physical
activity as well as behavior, learning, anxiety, depression
and attention problems. The researchers found that between
having only one pumping chamber, and having three or more
surgeries before age 5, children whose hearts require
this approach have more health problems, and problems
with school and daily activities than children and teenagers
with normal hearts or even with other forms of heart disease.
This article discusses the details of this study and suggests
ways to address health problems. You might want to discuss
the findings in this article with your child’s cardiologist. |
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Design
of a Large Cross-Sectional Study to Facilitate Future
Clinical Trials in Children
with
the Fontan Palliation (PDF)
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Lynn
A. Sleeper, ScD, Page Anderson, MD, Daphne T. Hsu, MD,
Lynn Mahony, MD,
Brian W. McCrindle, MD, MPH, Stephen J. Roth, MD, MPH,
J. Phillip Saul, MD, Richard V. Williams, MD,
Tal Geva, MD,Steven D. Colan, MD, and Bernard J. Clark,
MD for the Pediatric Heart Network Investigators
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| Conducting
randomized clinical trials in children with congenital
heart disease has been challenging. This article describes
how the Fontan study was designed and implemented in the
Pediatric Heart Network. The purpose of the study was
to gain information about the relationship between health
status and clinical measurements and to provide a basis
for end point selection for subsequent clinical trials
in this population. |
2007
Randomized
Trial of Pulsed Corticosteroid Therapy for Primary Treatment
of Kawasaki Disease (PDF)
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Jane
W. Newburger, M.D., M.P.H., Lynn A. Sleeper, Sc.D.,
Brian W. McCrindle, M.D., M.P.H., L. LuAnn Minich, M.D.,
Welton Gersony, M.D.,
Victoria L. Vetter, M.D., Andrew M. Atz, M.D., Jennifer
S. Li, M.D., Masato Takahashi, M.D., Annette L. Baker,
M.S.N., P.N.P., Steven D. Colan, M.D., Paul D. Mitchell,
M.S., Gloria L. Klein, M.S., R.D., and Robert P. Sundel,
M.D.
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Kawasaki
disease (KD) gives children high fevers, red eyes and
tongue, swollen glands, a rash and red, swollen hands
and feet. A few children also have problems with the blood
vessels that feed the heart. These are called coronary
arteries. The walls of these arteries can become thin
and develop a bulge or "balloon". This is called
an aneurysm. Because of this, children with KD are treated
with intravenous gamma globulin (IVIG) and aspirin, which
has been shown in previous studies to reduce the number
of aneurysms. Despite this therapy, however, some children
still get coronary artery aneurysms when they have KD.
We enrolled 199 children with KD from 2002-2004. We wanted
to see if adding a single high dose of IV steroids to
the usual therapy of IVIG and aspirin would decrease the
number of children who got aneurysms. We found that adding
steroids did not help. A small group of the sickest children
may have been helped by steroids but we need to do more
research to really answer this question.
If your child has Kawasaki disease, you should talk with
your pediatrician about treatment.
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Coronary
Artery Involvement in Children With Kawasaki Disease.
Risk Factors From Analysis of Serial Normalized Measurements
(PDF)
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Brian
W. McCrindle, Jennifer S. Li, L. LuAnn Minich, Steven
D. Colan, Andrew M. Atz, Masato Takahashi, Victoria
L. Vetter, Welton M. Gersony, Paul D. Mitchell, Jane
W. Newburger and for the Pediatric Heart Network Investigators
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| Kawasaki
disease (KD) is a disease in young children that can affect
the blood vessels that supply the heart itself with blood.
These blood vessels are called coronary arteries. In KD,
the coronary arteries can be hurt and weakened, causing
bulges called aneurysms, which can burst or lead to heart
attacks. However, most children who have had KD will have
very little or no changes in their coronary arteries.
An ultrasound test called an echocardiogram can look at
the coronary arteries and measure them, to see if damage
has occurred. Specialists need to know which children
are at highest risk for having damaged arteries, so that
they may give them better treatments and watch them more
closely.
The Pediatric
Heart Network did a study on 190 patients to find out
how coronary arteries can change over time in patients
with KD. Very few patients had any aneurysms, but some
had vessels that were larger than normal, and this seemed
to go away within a few weeks. Things that predicted
if coronary arteries would be bigger included some of
the blood test results that the patients had when they
first came to hospital, if the patient was very young
and if the treatment was delayed. Overall, the patients
did very well, with very few heart problems.
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Physical
activity levels in children and adolescents are reduced
after the Fontan procedure, independent of exercise capacity,
and are associated with lower perceived general health.
(PDF)
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Brian
W. McCrindle, Richard V. Williams, Seema Mital, Bernard
J. Clark, Jennifer L. Russell, Gloria Klein and Joey
C Eisenmann
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Children
who have hearts with only one pumping chamber usually
have an operation called the Fontan procedure. These children
often can't exercise as well as their healthy friends
can. The Pediatric Heart Network studied 147 children
who had the Fontan procedure and looked at how physically
active they were. They compared this with how much physical
activity their exercise tests showed they could do safely.
The researchers found that these children did not take
part in enough physical activity, even if their exercise
tests showed that they could exercise safely. This was
because the children did not feel that they were healthy
enough. Regular exercise is important for all children
to be healthy. You should talk with your child's cardiologist
about what exercises your child can do and encourage your
child to do the exercises that he or she recommends.
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Department
of Health and Human Services
National
Institutes of Health
National
Heart, Lung, and Blood Institute