Leaving the Nest with Special Needs

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Children with special needs in health care need preparation to transition to adult care

May 12, 2013 / Author:  / Reviewed by: Robert Carlson, M.D

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(dailyRx News) Millions of children grow up with long-term health conditions. They will need to continue receiving care as adults, but are they ready to take on that responsibility?

A recent study found that too few children with special health care needs are being prepared to transition to adult health care.

Approximately 4.5 million adolescents, aged 12 to 18, have a special health care need in the US.

This number comprises about 18.4 percent of US youth, and about one third of these young people have emotional, behavioral or developmental conditions.

"Discuss health care transitions with your pediatrician."

These study, led by Margaret A. McManus, MHS, of The National Alliance to Advance Adolescent Health in Washington, DC, looked at how well children with special health care needs are able to transition to adult health care.

The researchers gathered data from 17,114 parents in the 2009-2010 National Survey of Children with Special Health Care Needs.

All the parents surveyed had children between the ages of 12 and 18 who had some kind of special need related to their health care.

The parents were asked about all the aspects associated with moving a child's care from a pediatric care provider to an adult care provider.

These aspects include the ways in which the child's health needs change, how the responsibility for those needs changes, finding an adult care provider and keeping health insurance coverage during the process.

The researchers found that only 40 percent of the respondents had children who were effectively transitioning from pediatric care to adult care.

Successful transition preparation means that the following conditions have been met:

  • A doctor has discussed finding an adult provider (if needed) with the parents and the child
  • A doctor has discussed with the parents and child what the child's future health care needs are likely to be
  • A doctor has discussed with the parents and child what the child's future insurance needs are likely to be
  • Caretakers have encouraged children to take responsibility for their health care needs

Those most likely to successfully transition from pediatric care to adult care were girls, white children, non-Hispanic children, younger children and those in higher income brackets (at least 400 percent of the federal poverty guidelines).

Those who had a medical home or were privately insured were also more likely to make the transition fully.

A "medical home" is a type of "home base" for a child's medical records, needs and information. It includes a primary doctor and coordinated care with any specialists the children need for their conditions.

Those with emotional, behavioral or developmental conditions were less likely to have a successful transition from pediatric care to adult care.

The researchers concluded that not enough children are being prepared for the transition to adult care. They noted that the numbers have not improved much since the 2005-2006 National Survey of Children with Special Health Care Needs.

"Our findings suggest that a much more concerted focus is needed to achieve progress in transition from pediatric to adult health care for youth with special health care needs, prioritizing those least likely to receive transition support," they wrote.

The study was published May 13 in the journal Pediatrics. The research was funded by the National Health Care Transition Center. The authors declared no conflicts of interest.