Bridging the Pediatric-Adult Divide in Neuroscience Care

It’s past time to fulfill the call for truly transitional care

By Neil R. Friedman, MBChB

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While the old adage “children are not just small adults” remains true with respect to anatomic, physiologic, developmental and psychological characteristics, increasingly the discrepancies between the realms of adult and pediatric care realms are being challenged.

Medical innovations have improved survival for children with previously fatal childhood conditions, with resulting shifts in demographic and disease profiles. For example, there are now more adult survivors of congenital heart disease than there are children with the condition. Similarly, advances in technology and the understanding and treatment of childhood neurological conditions over the past several decades have allowed many children with challenging and disabling neurological conditions to live longer.

Every year at least 500,000 to 750,000 young people with special healthcare issues become adults.1,2 Diagnoses that were once exclusive to the care of children are now being seen in adulthood, the management of which sometimes leads to discomfort among adult-care providers. Children with medical complexity and functional and/or intellectual disability have medical fragility and demanding care needs that are not easily met by existing healthcare models. The style of neurological care delivery is typically quite different in the pediatric and adult settings. Additionally, adult neurologists, accustomed to a culture of subspecialization, may be hesitant to assist in the coordination of the systems of care necessary to manage these patients. Balancing subspecialty care against age-appropriate care appears difficult, providing both challenges and opportunities. There is no “one-size-fits-all” solution.

Beyond survival: Grownups with complex childhood diseases

Patients with rare and/or complex diseases often receive fragmented and inadequate care unless efforts are coordinated among providers. In 1989, then-U.S. Surgeon General C. Everett Koop coined the term “transition” and addressed the deficiencies in the healthcare system for children with these conditions as they entered adult systems of care.3 The transition of care from childhood to adulthood in patients with complex neurological disorders should therefore be one of continuity rather than abrupt migration.

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As an integrated healthcare system providing care from fetal life to death, Cleveland Clinic is ideally situated to tackle these challenges as it develops innovative models of care to address this health divide. One example is the Congenital and Transitional Neurosurgical Program offered through our Center for Pediatric Neurosciences to care for patients with congenital hydrocephalus and cerebrospinal fluid diversion procedures. As showcased in a recent case-based article by Onwuzulike and Recinos, this unique care model facilitates comprehensive, integrated and coordinated transitional care to meet the special needs of this underserved population.

Genetic disease across the continuum

Another focus in bridging the pediatric-adult divide has been the development of interdisciplinary clinics with both pediatric and adult specialty providers for rare genetic conditions that extend across the life span. Genetic disease has had an undeniable and momentous impact in all areas of pediatric neurological disorders: It is estimated that of the roughly 10,000 known genetic diseases, approximately one-third are primarily neurological or have a neurologic component.

There is increasing recognition that the spectrum and manifestations of these diseases change as patients age. The ability to provide coordinated, interdisciplinary, patient-centered care allows for optimal patient management and satisfaction. It also provides a rich opportunity for collaborative research in these rare disorders. Cleveland Clinic’s multidisciplinary PTEN (phosphatase and tensin homolog) clinic is a prime example of this type of highly integrated caregiving that goes beyond the individual life span to extend to broader family evaluation and management, as detailed in a recent case-based article by Parikh and Eng.

Children are at risk of being left behind

An additional manifestation of the pediatric-adult divide has been in the application of technology and medical and surgical devices. All too often, adult devices are modified to accommodate pediatric populations, with too few critical devices designed specifically for children. Children are not generally the targeted patient population for most complex medical devices. Recognizing this, the FDA has committed to supporting the development and availability of safe and effective pediatric devices through a plan to increase the number of medical devices with labeling for pediatric patients. This can best be achieved by incorporating known information about device effects in adult populations.4 In the meantime, judicious off-label use of devices in appropriate pediatric patients with critical needs can be an option when supported by close collaboration with adult-care colleagues, as illustrated in this recent case study of mechanical thrombectomy in a pediatric stroke patient treated at our center.

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Cleveland Clinic is well positioned to offer constructive challenges to the traditional divide between pediatric and adult care. As the number of adult survivors of childhood conditions continues to increase, pediatric and adult medicine can no longer be viewed as immutably separate spheres. Facilitating a seamless transition from pediatric to adult care, along with providing coordinated, interdisciplinary patient-centered care across the life span, allows for optimal patient management and outcomes as well as ongoing opportunities for collaborative research.

References

  1. Lotstein DS, McPherson M, Strickland B, et al. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics. 2005;115:1562-1568.
  2. Scal P, Ireland M. Addressing transition to adult health care for adolescents with special health care needs. Pediatrics. 2005;115:1607-1612.
  3. Koop CE. Introductory remarks. In: McGrab P, Millar H, eds. Surgeon General’s Conference. Growing Up and Getting Medical Care: Youth with Special Health Care Needs. Washington, DC: National Center for Networking Community Based Services, Georgetown University Child Development Center; 1989. Available at: https://profiles.nlm.nih.gov/ps/access/NNbczs.pdf.
  4. U.S. Food and Drug Administration. Leveraging Existing Clinical Data for Extrapolation to Pediatric Uses of Medical Devices: Guidance for Industry and Food and Drug Administration Staff. U.S. FDA Guidance Document ID: FDA-2015-D-1376. September 19, 2016 (Final). Available at: fda.gov/downloads/medicaldevices/deviceregulationandguidance/guidancedocuments/ucm444591.pdf.

Dr. Friedman is Director of the Center for Pediatric Neurosciences in Cleveland Clinic Neurological Institute and Cleveland Clinic Children’s.