We often don’t think of neurosurgeons as the providers of chronic care or as the gatekeepers of a “medical home.” But, in reality, we often are responsible for the management of comprehensive and collaborative care in interdisciplinary medical homes. Whether these “homes” are centered in one’s office, in a hospital or outpatient setting, we have all experienced the changes in health care — for better or for worse — that have affected our ability to manage our patients’ care. As a parent and as a pediatric neurosurgeon. I care about kids at home and at work. I have always been a responsible care-giver and health-care provider, for my patients and their families. During the 2014 AANS/CNS Joint Section on Pediatric Neurosurgery meeting in Amelia Island, Fla., guest speaker David L. Wood, MD, MPH, gave an outstanding talk on the transition of care for pediatric neurosurgeons. As pediatric neurosurgeons who provide care to children with spina bifida, hydrocephalus and cerebral palsy/movement disorders, we know what neurosurgical surveillance is and how to do it for our patients with congenital and chronic illness.

Helping Pediatric Neurosurgical Patients Transition
Dr. Wood spoke about the management of complex pediatric patients as they age, and how we, as their pediatric neurosurgeons, should carefully construct our patients’ transition from pediatric to adult neurosurgical care. Children with developmental disabilities and neurological disorders often need to follow up with neurosurgeons for many years. As the physicians and surgeons for children with neurological disorders, we experience and understand the stress and the challenges that our patients and their families face every day. As physicians and as caring adults, we often attempt to alleviate this stress by protecting our pediatric patients as much as possible. We provide caring and child-friendly environments for these children. We develop age-appropriate educational materials for our patients and their families. We have spent hours talking to parents about their child’s problems and prognosis. We have our patients’ best interest at heart, and we always have.

Dr. Wood discussed the American Academy of Pediatrics’ Policy Statement: “Care Coordination in the Medical Home: Integrating Health and Related Systems of Care for Children with Special Health Care Needs.” I read this policy statement and found it to be very informative and also very concerning. Many of our neurosurgical patients have complicated medical co-morbidities. There is additional stress related to the socioeconomic status and educational level of the family, which makes caring for these patients extremely challenging. It often takes additional time and effort to ensure that our patients truly can give an informed consent for surgery. In the peri-operative period, our neurosurgical patients often require in-patient consultation of other specialists, such as critical-care physicians, pulmonologists or cardiologists. Many of our patients require extended lengths of stay (LOS). Perhaps because of the Affordable Care Act (ACA) and decreasing reimbursements, many sub-specialists have stopped accepting elective patients with Medicaid, Medicaid HMOs or similar insurance plans. They simply cannot afford to spend the extra time and effort for minimal reimbursement. They are not willing to accept an increased liability risk for caring for these medically complex and fragile neurosurgical patients. Yet more often, our neurosurgical patients are calling for us to provide basic medical care. They get no response when they call the hospital-based “free” clinic. Because some need help immediately, emergency room visits for these patients increase, and they become “frequent fliers” in the emergency department.

Surveillance Needed
Surveillance care for neurosurgery patients is certainly challenging, especially since reimbursement and the ability to provide adequate care have become quite difficult. Through my participation in the adult spina bifida clinic at Kessler Institute of Rehabilitation, I have learned a few things:

• Surveillance / annual neuro-imaging: Annual neuro-imaging is not necessary. I do recommend a good MRI brain and spine to be kept on a CD disk for future reference. For patients in extremis condition, the emergency room providers mandate the necessary scans. We only order follow-up imaging for clinically demonstrated neurological decline.
• Surveillance / annual clinical examination: The annual examination at the adult spina bifida center allows us to evaluate and document the patient’s neurological function over time. We see patients with the physiatrist and family medicine physicians, with the nearby presence of the urologists and neurologists. We often make referrals for physical therapy, social work and electrophysiological studies, and mandate that these less expensive interventions are completed. This process starts in the pediatric interdisciplinary clinics. The history of each pediatric patient is carried over to the adult interdisciplinary clinic by the family medicine physician and the neurosurgeon.

Despite our efforts to provide the best care possible for our patients, I have seen increasing depression and frustration in my patients and their families as services for our patients are increasingly eliminated by budget cuts. State supported programs in New Jersey have been severely restricted and adults with developmental disabilities and neurological problems have been severely affected in a negative way. Some very special doctors still spend hours on the phone advocating for our patients’ wheelchairs, medications and orthotics. Bruce Gans, MD, executive vice president and chief medical officer of Kessler Institute for Rehabilitation, the national medical director for rehabilitation of the Select Medical Corp. and a professor of physical medicine and rehabilitation at Rutgers New Jersey Medical School, has become very involved on a national level for advocating for patients with disabilities.

Over the last several years, the ability to provide surveillance care for neurosurgical patients has been challenging. We have found that through our participation in interdisciplinary medical homes for neurosurgical patients with congenital and chronic illness, we have been able to decrease the need for and the cost of neuroimaging and neurosurgical procedures. We have had a positive effect in our patient’s lives, and we have forced them to engage in the management of their own health care. We have been able to intervene before the need for surgery develops in many cases. In fact, we have developed a very cost-effective method of managing our neurosurgical patients with chronic and congenital illness and disease.

Catherine A. Mazzola, MD, FAANS, is the founder, president and CEO of the New Jersey Pediatric Neuroscience Institute, a large multidisciplinary, neuroscience group that serves several hospitals and locations in New Jersey. Dr. Mazzola completed her pediatric neurosurgical fellowship at the University of Pittsburgh in 2002 and did her neurosurgery residency at New Jersey Medical School. A member of the AANS Neurosurgeon Editorial Board, she has served on the Executive Committee of the Congress of Neurological Surgeons and on the Executive Committee of the Council of State Neurosurgical Societies. The author reported no conflicts for disclosure.