Closing the Gap between Pediatric and Adult Care: Establishing Proper Transition Care
This Journal of Pediatric Neurology (JPN) special edition on “Problems in the Transition from Childhood Neurosurgery to Adult Neurosurgery” has been ignited by a posting from the editorial office of JPN at a time, when I found an advertisement leaflet that I picked up some time ago from Cleveland Clinics. It was titled Pediatric Neurosciences Brief, published by their Pediatric Neurosciences Program and edited by Neil Friedman. It astutely identified a problem in the clinical neurosciences that requires joint efforts to improved patient-centered care and it helped me realize that it implicitly pointed at a very relevant gap in the literature, where transitional care in neurosurgery patients is insufficiently addressed and evidence for optimal patient care is lacking.
However, reflecting on it some more, it brought to my attention that over the last decades, an increasing number of specific disease entities that once were encountered in pediatric patients only are now also seen in adult patients, albeit with varied—and sometimes delayed—manifestations. This phenomenon is due to improvements in medical care that have bolstered survival in previously inevitably fatal diseases. Advances and more widespread availability of medical technology have promoted this development and led to a much-improved rate of early diagnosis and a better understanding in the etiology and treatment of complex conditions of the nervous system, thus permitting prolonged survival even with complicated and sometimes very challenging conditions.
Undoubtedly, the few existing experts in the field agree that the transition from childhood care to adult care in this unique setting should preferably be one with an emphasis on continuity of care, rather than an abrupt handing-over at a given (but arbitrarily chosen) age. This realization has not happened yet everywhere, but is becoming increasingly important, and you may ask: Why?—Let me attempt to give a brief answer:
The success story of modern medicine has shifted demographics and disease profiles in a way that adult-care providers are now increasingly confronted with patients who were not previously seen in their practice and these providers are facing a multitude of questions from patients, families, and colleagues about how to manage such conditions. This scenario may leave doctors both uncomfortable and inexperienced—and it poses a new challenge to many health care workers and systems, since pediatric and adolescent patients with distinct physical, functional, or intellectual compromise often have care needs that are not served well in existing organizational structures where the delivery of subspecialty care is usually fragmented.
Adult neurosurgeons, neurologist, and allied health care providers frequently work in an environment promoting specialization, creating a network where the transition of care of these patients with their particular needs is not coordinated routinely. With this JPN special edition, the authors are trying to point out that this needs to change. To this end, some innovative health care teams have already embarked on innovative concepts of extended multidisciplinary clinics addressing specific diseases longitudinally (e.g., in neoplastic or syndromic disorders and for rare genetically caused conditions) sometimes involving multiple affected families allowing to also generate better peer support. Such multidisciplinary clinics will create coordinated patient and family-centered care and allow for optimized disease- and patient-specific management, which likely leads to improved patient satisfaction. Such clinics can also be designed in a way that resources and databases are shared between pediatric and adult providers of various neuroscience specialties (e.g., neurology, neurosurgery, physiatry, genetics, and radiation oncology to name but a few), which create further unique opportunities for research, that is, late sequelae and quality of life studies of survivors with pediatric brain tumors and other pathologies. Such centers specializing in the transition of care can also be drivers of specific pediatric medical device development and/or guide off-label use of critical devices that were initially approved for adults only. In these circumstances, the adult care provider team benefits from the experience of the pediatric team and gains valuable insight from their extensive prior experience.
By picking a few exemplary topics such as hydrocephalus and shunt surveillance, intracranial vascular disease,  intrinsic brain tumors, spina bifida, and surgery for epilepsy as well as “Management and Surveillance of Short- and Long-Term Sequelae of Radiation Therapy for the Treatment of Pediatric Brain Tumors” of the rich list of problems that are being encountered in this uniquely vulnerable patient population, we are hoping to instigate further discussion in the field to create new opportunities to bridge the pediatric-adult care divide in neurosurgery wherever we identify them.
We very much hope that this issue will serve as a spark to ignite a much-needed debate among us and our colleagues how to better address these problems in an interdisciplinary fashion in hope of achieving further improvement in our patients' care.
Received: 08 January 2020
Accepted: 15 January 2020
20 August 2020 (online)
© 2020. Thieme. All rights reserved.
Georg Thieme Verlag KG
Stuttgart · New York
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