Every pediatrician faces the difficult problem of how best to transition older teens with chronic medical conditions to appropriate adult care providers. Articles in this month’s Pediatric Annals highlight programs in the United States, Canada, and Great Britain that have developed transition strategies, and what can be learned from each. These articles were solicited and edited by Jill Weissberg-Benchell, PhD, Associate Professor of Psychiatry and Behavioral Sciences, Northwestern University Feinberg School of Medicine. Dr. Weissberg-Benchell has studied this issue extensively.
While it appears the perfect system doesn’t yet exist, some general principles can be stated and used as guidance in this area. To some degree, this issue is handled in a subspecialty-specific fashion, and geographic variability can be striking. Among the most important issues for young adults with chronic illnesses is finding insurance coverage for their health care needs; losing coverage from their parents’ policies and having a pre-existing condition can be major impediments, especially if the Affordable Care Act is overturned by the Supreme Court.
Danny Thomas commemorative “Forever” stamp, honoring the 100th anniversary of his birth as well as the 50th anniversary of St. Jude’s Children Research Hospital, which Thomas founded in 1962.All images courtesy of Stanford T. Shulman, MD. Reprinted with permission.
The article by White and colleagues (see page 191) highlights that 18% of US adolescents have a special health care need, and that almost all survive to adulthood. It outlines a new health care transition model using a quality improvement approach that is applicable to all youth as they transition to adult care providers and is based on a new report of the American Academy of Pediatrics, American College of Physicians, and the American Academy of Family Pediatrics. This includes introducing the transition policy at the 12- to 13-year-old visit and having the youth experience an adult model of care at 18 years, even if they have not yet transitioned to an adult practice. This is a must-read article.
I would like to call your attention to this month’s Trend Watch coverage of research done by Susan E. Swedo, MD, and colleagues, published in Pediatrics and Therapeutics. Their work, “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome),” represents a potentially very important change, in that it greatly reduces emphasis on the (unproven) relation of strep throat to obsessive-compulsive disorder (OCD) behavior.
Proof of a causative role for acute strep throat has been elusive and never substantiated in what has been termed PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci). This has led to considerable controversy. These investigators now want to shift their focus to the subgroup of patients who have abrupt onset of OCD or anorexic behaviors, but they are not now suggesting a specific infectious trigger. In my opinion, this is overall a step in the right direction. However, I am somewhat puzzled by the virtually complete absence of tic disorder from the new proposed entity, as patients with abrupt onset of tics have been very prominent among those considered for PANDAS. Also I am unclear what the basis is for adding patients with sudden onset of “severely restricted food intake.” Hopefully Dr. Swedo and colleagues will continue to gather clinical data and be willing to refine their criteria further in the future if warranted.
This Month’s Stamps
On Feb. 16, 2012, the US Postal Service issued the Danny Thomas commemorative “Forever” stamp, honoring the 100th anniversary of the comedian/humanitarian’s birth (Thomas died in 1991 at age 79). The stamp also marks the 50th anniversary of St. Jude Children’s Research Hospital, which Thomas founded in 1962. Located in Memphis, Tenn., St. Jude’s is a major US pediatric hospital, particularly for children with cancer.
Danny Thomas, (born as Amos Muzyad Yakhoob Kairouz), grew up in Toledo, Ohio (my hometown), where he was a high school classmate of my late father-in-law at Woodward High School. Thomas’s parents were Maronite Catholic Lebanese immigrants. After attending the University of Toledo, then working in radio in Detroit and at clubs in Chicago, Thomas became a star of radio, television and film. His TV show Make Room for Daddy, later The Danny Thomas Show, dominated from 1953 to 1965, winning numerous Emmy Awards. Thomas also became a highly successful TV producer. His daughter, Marlo Thomas, a well-known TV personality in her own right as well as spokeswoman for St. Jude’s, is married to former TV talk show host Phil Donahue.
In 1957, Thomas founded the American Lebanese Syrian Associated Charities, which has become the highly effective fundraising organization for St. Jude Children’s Research Hospital. The founding premise was that, “No child should die in the dawn of life.” Named after St. Jude Thaddeus, the patron saint of hopeless causes, St. Jude Hospital is not affiliated with any religious organization, and treats all patients without regard to the family’s ability to pay. The Hospital also assists families with transportation, lodging, and meals. This is truly remarkable today and is related to the very impressive fundraising activities and endowment of the institution.
St. Jude further distinguishes itself with outstanding research programs and prominent investigators, such as Peter C. Doherty, PhD, the co-recipient of the 1996 Nobel Prize in physiology or medicine for his studies of the immune mechanisms of killing virus-infected cells.