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Moving from Pediatric Medical Care to Adult Care-Barriers and Unmet Needs
On Tuesday, June 13th, the New York Times in an article entitled "A Graduation That May Carry Unnecessary Risk" written by Perri Klass, M.D. a discussion was initiated around the transition of children from pediatric care settings to adult care settings. "Dr. Debra Lotstein, assistant professor of pediatrics at the University of California, Los Angeles, studies this transition in adolescents and young adults with chronic medical conditions - problems which can range from asthma and diabetes to developmental conditions like autism to complex and rare syndromes. As they move out of the pediatrician's office, Dr. Lotstein and her colleagues have found, transition planning is often limited, and gaps in care occur for as many as two-thirds of these young adults."1
This transition is also a problem in the childhood cancer community. Groups like the Livestrong Young Adult Alliance have been looking into cancer care in young adults (ages 15-39)and others have been looking at follow-up care for this population.
While long term follow-up clinics provide comprehensive care with experts specializing in the late effects of cancer, many childhood cancer survivors and brain tumor survivors are not seen in these clinics. Dr. Daniel Bowers, UT Southwestern, in a study of long term follow-up clinics funded in part by Children's Brain Tumor Foundation, found care for brain tumor patients who were under 18 years old at diagnosis but are now over 21 years old was provided at a designated LTFU clinic for young adults 24.8% of the time, in a neuro-oncology clinic 21.7% of the time, in a pediatric oncology clinic 19.4% of the time, and in an adult neuro-oncology program 10.9% of the time, or by other means 23.3% of the time. Included in the variation of the follow-up was the variability with regard to interval until discontinuation of surveillance MRIs among medulloblastoma survivors. Dr. Bowers study found barriers to care included lack of insurance, lack of funding or dedicated time for providers patients' uncertainty or unwillingness to follow-up or patients being lost to follow-up.2
While the NY Times article brings to light the importance of transitioning to facilities which are familiar with the medical needs of young adults, we need to assure they are able to provide the comprehensive and supportive care they receive in pediatric settings.
CBTF web site lists Long Term Follow-Up Clinics including those specific to young adults. If you have comments about your experience in the transition or the unmet needs of the population please let us know.
1. Klass, P. (2011, June 13) A graduation that may carry unnecessary risk. New York Times, D5.
2. Bowers, D.C., Adhikari. S., El-Khashab, Y. M., Gargan,. L. and Oeffinger . K.C. (2009) Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors. Pediatric Blood and Cancer,53 (7), 1295-1307.