On a clear fall day in October of 2004, Bridget Lane took her new daughter Mary
Alice to see her pediatrician. She was a
fussy 7-week-old that did not want to grow.
The reason for her lack of growth was quickly identified as an inability
to digest and absorb the fat in her formula.
This was just one complication of a disease called Cystic Fibrosis. Mary Alice’s parents are now experts in
Cystic Fibrosis and the care of a child with a complex, chronic disease. This is because of their exceptional dedication
to Mary Alice and a medical care delivery structure called “the Family Centered
Medical Home.” This structure has been
at the backbone of the care of children for over 40 years.
The American
Academy of Pediatrics set
the “Medical Home” as the standard of Pediatric care in 1992 with a formal
policy statement:
The goal of pediatricians is that the
medical care of infants, children and adolescents ideally should be accessible,
continuous, comprehensive, family-centered, coordinated and compassionate. It should be delivered or directed by
well-trained physicians who are able to manage or facilitate essentially all
aspects of pediatric care. The
physicians should be known to the child and family and should be able to
develop a relationship of mutual responsibility and trust with them.
A Medical Home model of healthcare means that the
pediatrician's office serves as the "hub" of a busy wheel of care. Most children need some specialized services
over the course of their childhood, adolescent and young adult years. The “spokes” of this care wheel could be an
Orthopedist for a broken arm, a Speech Therapist for a language problem or a
Nutritionist for dietary causes of obesity.
For children with chronic, complex diseases; there can be many spokes. The patient has the best chance of preventing
or effectively managing their health challenges if the Medical Home serves as
the hub, keeping all providers in good communication. A study published in the Journal of Maternal
and Child Health in 2011 clearly showed reduced health care costs, more stable
health and reduced Emergency Room visits for children with special health care
needs who have a Medical Home.
Advances in medical technology have made it possible for
doctors to cure or provide life-sustaining treatments to patients whose
illnesses would have been lethal only a few decades ago. However, for many of
these patients and their families, maintaining their best quality of life
involves the care of many medical subspecialists, taking many medications, and
using various therapy services and medical devices. Navigating this degree of
medical support is overwhelming for most parents of medically complex children.
Ideally, parents should be able to count on a team to support the coordinated
care among the roster of medical subspecialists and services. This pediatric
care team, known as the "Medical Home", synthesizes information
coming in from subspecialists and other providers and ensures the parents'
understanding of all ongoing issues. The Medical Home team spots opportunities
for prevention, keeps problems simple before they get more serious, streamlines
care, minimizes complications and eliminates unnecessary therapies.
Unfortunately, one out of every five children in the Tennessee Valley region does not have a primary
care physician, let alone a “Medical Home.”
These children, often, need this type of care coordination and family
support the most. The 2007 National
Survey of Children’s Health showed that as children get older in Tennessee the likelihood
of a child being in a Medical Home decreases.
The percent of children in a medical home from birth to preschool in our
region is 67.1% and drops to 54.5% by 12-17 years. Another factor is family income. In families who make more than $94,000 per
year, three out of four have a Medical Home.
In contrast, only half of the children in families who make less than
$24,000 per year have a Medical Home. Race
also has an impact. Seven out of ten
White children have a medical home while only five out of ten Hispanic and four
out of ten Black children have a medical home.
The Pediatric Health Improvement Coalition of the Tennessee Valley (PHIC-TV) believes that the
adequate healthcare for children is in a Family Centered Medical Home. PHIC-TV is an organization that is working to
define why children in our region do not have Family Centered Medical
Homes. This organization is dedicated to
breaking down barriers to our children to this type of care. Please support the ongoing work of PHIC-TV by
getting more information at healthychattanoogakids.blogspot.com or following on
Twitter @PHIC_TV.
Alan Kohrt, MD, FAAP
Alan Kohrt, MD, FAAP
Professor and Chair, Department of Pediatrics, UTCOM, Chattanooga
CEO, Children's Hospital at Erlanger
Kourtney Santucci, MD, FAAP
Hospitalist Physician, Children's Hospital at Erlanger
R. Allen Coffman, Jr., MD, FAAP
Pediatrician, Highland Pediatrics
President, Tennessee Chapter of the American Academy of Pediatrics
healthychattanoogakids@gmail.com