Adults with Childhood-Onset Disorders in Danger of Falling Off Radar

Adults with childhood-onset disorders are in danger of slipping through
the health care system’s cracks, according to Laura L. Tosi, MD, principal
investigator for the Children’s Research Institute at Children’s
National Medical Center in Washington D.C.

  Laura L. Tosi
  Laura L. Tosi

Large numbers of patients diagnosed with childhood-onset disorders of
the musculoskeletal system such as cerebral palsy; spina bifida; osteogenesis
imperfecta, commonly known as brittle bone disease; and arthrogryposis
multiplex congenita (AMC), a disease that limits joint movement, are living
well into adulthood.

Years ago, reports suggested that it was unlikely for individuals with
cerebral palsy and spina bifida to survive into adulthood, according to Tosi.
However, with advances in health care technology and medicines, survival rates
for children born with musculoskeletal disorders have vastly improved.

“In my own experience, far more than 95% of my cerebral palsy
patients make it to adulthood,” Tosi estimated. “This depends on
their functional abilities. But with good functional ability, their survival
rate is essentially equal to the non-cerebral palsy population. The data on
individuals with spina bifida is less robust, but in the United States, we
expect at least 75% of patients with spina bifida to reach adulthood.”

As these patients transition into adulthood, it has become increasingly
clear that the adult health care system is not yet ready for them.

“The numbers of individuals living into adulthood are
growing,” Tosi told O&P Business News. “There are no
solutions right now. There are a large number of work-arounds and model
projects. Are patients in danger of slipping through the cracks? You bet your
bottom dollar. A large number of people believe we need to do a better

The health care industry must begin to look at new models of care that
allow these patients to receive the same quality of services that they received
as children.

“This is a tidal wave coming our way and it is time to think about
creative solutions,” Tosi explained. “We help these children grow up,
now we need to help them be successful or, if possible, independent adults. We
have to get better.”

A recent University of California at San Francisco survey reported that
only half of general internists surveyed considered themselves capable of
filling the primary care needs of young adults with childhood onset disorders.
In the same survey, 62% of pediatricians believed that these patients would
have difficulty finding a primary care provider.

According to Tosi, the reality is most pediatric institutions are forced
to discharge adult patients with childhood-onset disorders because adult care
is outside their mission. The staffs at these institutions are not trained in
adult medical issues and they do not have the equipment to care for adult sized

“If you have a patient with cerebral palsy having a heart attack
who is going to take care of them?” Tosi asked. “There are a lot of
reasons why the pediatric hospitals are totally justified in saying these
patients simply do not belong here anymore. Unfortunately, many patients,
particularly those who are severely physically disabled, slowly but surely stop
leaving their homes, so they disappear. They fall off the radar.”

According to Tosi, the need to provide high-quality care for adults with
a wide range of childhood-onset disorders including sickle cell disease,
congenital heart disease and cystic fibrosis, demands a new look at how care is
delivered to individuals with complex disorders across the age span. —
by Anthony Calabro

For more information:

  • Okumura MJ, Kerr EA, Cabana MD, Davis MM, Demonner S, Heisler M.
    Physician views on barriers to primary care for young adults with
    childhood-onset chronic disease. Pediatrics. 2010; 125(4):748-754.


I agree that this is a challenge, but one that is being tackled in
multiple ways. Many pediatric hospitals have transition plans in place to help
the young adult move to adult care. I know that Shriners has developed a
detailed, well-organized transition program. We have several programs to assist
families in making the transition to adult care because we usually stop
providing care when the client is 21-years old. In rehabilitation medicine, we
are fortunate to have several physicians who practice at Seattle
Children’s and the University of Washington Medical Center so they are
able to provide care and get to know the child and family prior to moving into
adult care.

I agree that this is an area that needs more attention for the reasons
stated in the article. I have found it helpful to encourage the teen and their
parents to clearly understand the issues related to their on- going medical
needs, assist them in seeking out resources and provide support to community
clinicians who will be providing on-going care.

— Sharon Greenberg, MOT, OTR/L
therapist, Seattle Children’s Hospital, Research Foundation

Leave a Reply

Your email address will not be published.