Transitioning patients from pediatric to adult care is an issue of increasing concern, especially when it involves children with chronic conditions that are congenital or complex.1 Care of these children often requires the special expertise of pediatric subspecialists in addition to ongoing primary care. Pediatric specialists and generalists anticipate that patients will age out of their care, yet many adult medicine practitioners do not feel comfortable assuming responsibility for young adults chronically ill with pediatric disorders. A growing array of strategies and interventions are being designed to facilitate this transition, yet they all may not be necessary. The conclusion that a transition to adult care is indicated is generally based on traditional age cutoffs rather than science. Although it would be a significant change, pediatric subspecialists could reframe their services as condition-specific rather than age-specific care and continue to provide care to their aging patients over the life course...
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June 2015
Drs. White and Cooley are leaders in the field of care transition whose work I highly respect. They are quite right that the solution to providing care to older adolescents and young adults with chronic health problems that have required pediatric subspecialty care is multi-faceted. My suggestion that pediatric subspecialists continue to care for their patients beyond some arbitrary age cut-off was intended to add to the list of available options. If the origin of the need for transition for some children is the ending of care by pediatric subspecialists, then it makes sense to go to the source for a solution. I am aware that providers of care for children with cystic fibrosis have developed specialty clinics that successfully maintain high quality care over the life course. Training adult cardiologists to care for adults with congenital heart disease is surely one approach to transitioning care for this population, but creating new subspecialties for every chronic or complex childhood condition when pediatric subspecialists already exist seems inefficient. Their misreading of my commentary also led Drs. White and Cooley to minimize the scope of the problem addressed by my commentary. Indeed, complex congenital conditions make up a small proportion of youth with special health care needs, but the number with congenital or complex conditions is substantially larger, especially when developmental conditions are included. Care transition remains a concern for large numbers of families with children and youth with special health care needs ranking just below subspecialty access and care coordination as problems they encounter. Got Transition/Center for Health Care Transition Improvement is a valuable resource for these families and for their health care providers.
Conflict of Interest:
None declared
Edward Schor's (1) recent commentary raises questions about the age cut-offs for transitioning from pediatric subspecialty care. Although we recognize the current difficulties of maintaining continuity of care for young adults with complex congenital conditions aging out of pediatric care without adult providers comfortable in assuming their care, we believe the solution is multi-faceted and should not be addressed by broadly extending the age cut-offs for all pediatric subspecialty care. Unfortunately, the population of children with congenital complex conditions was not well defined in Dr. Schor's commentary; he referenced the AAP/AAFP/ACP Clinical Report on Transition, which incorporates a broad population of youth with special health care needs (YSHCN) and thus Dr. Schor implies that most of YSHCN should be cared for by pediatric providers. We would agree that having pediatric subspecialists provide care over the life course for the small number (0.4%) of youth with medical complexity (2) may make sense. The broader population of YSHCN (25%) (3) does not need a pediatric specialist to care for them in adulthood. Most adult providers have experience managing some childhood onset chronic conditions; for others, expanded efforts are needed to strengthen adult training in childhood-onset conditions (4) they have not seen and to expand pediatric subspecialty consultation as called for in the Six Core Elements of Health Care Transition (HCT) (5). Aligned with the AAP/AAFP/ACP Clinical Report, this intervention has been tested using a rigorous quality improvement approach. Thus only a small subset of children with complex chronic conditions should have pediatric subspecialists retaining life-long responsibility. For the majority of YSHCN, a planned collaborative transition is needed and has been shown to work (cystic fibrosis and congenital heart disease) where adult providers learn the medicine of specific conditions and utilize pediatric consultation. This is a better model than training pediatric subspecialists in adult medicine.
1) Schor EL. Transition: changing old habits. Pediatrics. 2015; 135(6):958-60.
2) Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011; 127(3):529-38.
3) Prevalence estimates for 12-17 year olds from the 2011/12 National Survey of Children's Health. Available at http://childhealthdata.org/browse/survey/results?q=25468&r=18g=448. Accessed on 22 June 2015.
4) Okumura MJ, Heisler M, Davis MM, Cabana MD, Demonner S, Kerr EA. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med. 2008; 23(10):1621-7.
5) The Six Core Elements of Health Care Transition. Washington, DC: Got Transition/Center for Health Care Transition Improvement; 2014. Accessed at http://gottransition.org/providers/index.cfm on 28 March 2015.
Conflict of Interest:
None declared