Thanks in large part to Dr. Harold Rekate and Dr. Joseph Piatt, two Hydrocephalus Association Medical Advisory Board (HA MAB) members, awareness about the transition from pediatric to adult-centered care is being raised within important professional medical societies. It is with gratitude, delight and hope that we share with you recent attention by the American Association of Neurological Surgeons (AANS), the Pediatric Section of the AANS and Congress of Neurological Surgeons, and the American Academy of Pediatrics (AAP) as they take up the cause of addressing transition concerns with us. These organizations are large and don’t tend to move quickly; it may be a while for these efforts to bear fruit. We can, however, celebrate their efforts.

Transition to adult care settings is a critical challenge to members of the Hydrocephalus Association, many of whom have already or will soon be forced to transition out of their pediatric care setting and find adult-centered care. The issue of transition of care is not specific to hydrocephalus, but is shared by many conditions and diseases that are medically or surgically treated in childhood, including spina bifida, cerebral palsy, syringomyelia and congenital heart malformations. The medical community performs lifesaving interventions in childhood that allow people to grow into adulthood; however, they have chronic pre-existing conditions that make them virtually uninsurable and a mystery to those who were trained in adult medicine during a time when there were not yet adults with these conditions. It is a frontier that is in great need of wise leadership and positive change.

The AAP’s 2002 “Consensus Statement on Health Care Transition for Young Adults with Special Care Needs” inspired and informed HA’s Health-Care Transition Guide for Teens and Young Adults, which was published in 2003. In our Transition Guide, we focus on helping families and teens—beginning years before aging out of pediatric care—to work with potential providers of adult healthcare and put transition plans in place. But even with the best plans, adequate care is often not available or accessible within our current healthcare system for adults with complex, chronic medical conditions from childhood.

In 2004, pediatric neurosurgeon Dr. Andrew Parent wrote an article for Pediatric Short Cuts, a publication of the Pediatric Section, titled “What Happens When Our Patients Grow Up? Taking on the Tough Topic of Transitional Care.” In this article (reprinted in the HA Spring 2005 newsletter), Dr. Parent boldly states that all neurosurgeons must address the issue and acknowledge the impediments to appropriate transitional care for their patients before they can resolve the problem— which they must do for the good of their patients and the larger medical community.

In 2005, at a meeting of the HA MAB, Debby Buffa— member of the HA Board of Directors and mother of two daughters with hydrocephalus who are in the transition process—presented a heartfelt letter regarding the issues of transitional care for young adults with hydrocephalus. A lengthy dialogue ensued among the HA MAB members, and the topic was embraced as one of importance for our Association to continue to address— and for our HA MAB members to raise in other venues.

In January of 2006, Dr. Piatt proposed to the AAP Annual Leadership Forum (ALF) that transition to adult care settings for children with chronic medical and surgical conditions be made a top priority. The ALF is the AAP’s political, operational and strategic planning meeting, where resolutions are adopted and prioritized for recommendation to the board of directors. Dr. Piatt was an eloquent advocate: “Only the AAP can address systematic issues such as the benefit policies of CMS and other payors, the regulations of social service organizations, the structures of physician practices, and the training of medical and surgical subspecialists. If the AAP does not take ownership of this issue, no one else will.” The resolution passed with only supportive testimony from the floor, and ultimately it squeaked into the top 10 priorities.

These resolutions are not binding on the AAP board, which still needs to decide where to put its resources and how quickly to act. With Dr. Piatt’s guidance, the Association worked with the National Health Council, the National Organization for Rare Disorders, the Spina Bifida Association and other condition-specific advocacy groups with whom we share a stake in this issue to send an orchestrated message of support to the AAP. Many letters were sent to Dr. Jay Berkelhamer, President of the AAP board, encouraging action on this priority. The Hydrocephalus Association will have an exhibit booth at the 2007 AAP annual meeting in San Francisco to show our support and keep this issue of transition in the limelight.

Dr. Piatt warns, “Even if the board does convene a task force, and even if the task force’s recommendations are adopted, this process will yield benefits for our patients only over a very long timeline. Problems particular to neurosurgery, such as how to provide services for 30-year-olds with hydrocephalus, are not likely to receive focused attention. So this initiative complements but does not compete with efforts within our own subspecialty, as keynoted recently by Hal Rekate at the December meeting, to solve our own continuity-of-care problems.”

As Dr. Piatt mentions, another HA MAB member, Dr. Harold Rekate, has been working diligently within the Pediatric Section of the AANS/CNS. In December 2006, Dr. Rekate convened an affinity group at the Pediatric Section meeting that drew at least 100 people. The attendees explicitly recognized the issue’s importance, and shared examples of problems and solutions. Those assembled realized that we don’t yet have the answer, and that any one solution is not likely to work in all medical institutions or states; a group is forming under Dr. Rekate’s leadership for further exploration.

Keeping this issue at the forefront, Dr. Rekate chose it as his topic for the prestigious Matson Lecture at the April 2007 annual meeting of the full AANS: “A Contemporary Diaspora—The Role of the Neurosurgeon in the Transition of Care for Pediatric Neurosurgical Patients.” Showing a picture of the far-flung migration pattern of those displaced by Hurricane Katrina, he compared diaspora— the migration and scattering of peoples from their ancestral homes—to young adults with hydrocephalus having to leave their pediatric hospital homes. Dr. Rekate talked about the concern of “too many pitchers and not enough catchers,” referring to the number of pediatric neurosurgeons passing on “their kids” to too few adult neurosurgeons who are willing and qualified to take care of them. He proposed redefining the Pediatric Section as a Joint Section on Pediatric and Congenital Care, which would address surgically relevant congenital disorders and support those who commit to their care throughout life. In addition, he proposed building bridges with med-peds practitioners who have had two years of pediatric specialty training and two years of internal medicine and are board eligible in both.

Med-peds practices that aim to provide continuity of care for children who have been treated since infancy are being developed across the country, including in Phoenix, under the leadership of Dr. Rekate; in Cleveland, under the leadership of Dr. Mark Luciano; in Jacksonville, under the leadership of Dr. Hector James; and in Salt Lake City, under the leadership of Dr. Marion L. (Jack) Walker and Dr. John Kestle.

As a recent member of the National Health Council and longtime member of the National Organization for Rare Disorders, it is rewarding for HA to be working together with organizations advocating for our brother and sister conditions, as well as with members of our Medical Advisory Board, to create systemic healthcare change that will benefit us all.