As a parent and as a pediatric neurosurgeon I REALLY care about kids. During the AANS/CNS Joint Section on Pediatric Neurosurgery meeting in Amelia Island, FL, guest speaker David L. Wood, MD, MPH, gave an outstanding talk on the Transition of Care with Pediatric Neurosurgery Patients. He focused on the management of complex pediatric patients as they age, and how we, as their pediatric neurosurgeons, should carefully plan for our patients’ transition from pediatric to adult neurosurgical care. He suggested that we start the process for our patients at age fourteen. His interest in children with developmental disabilities and neurological disorders is similar to that in many pediatric neurosurgeons. As the surgeons for children with cerebral palsy (CP) and spina bifida, 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 the children who we care for as neurosurgeons have many medical co-morbidities. There is additional stress related to socioeconomic status and educational level of the family, which makes caring for these children extremely challenging. It often takes additional time and effort to ensure that the parents truly can give an informed consent for surgery. In the peri-operative period, these children often require in-patient consultation of other specialists, such as pediatric pulmonologists or critical care specialists. Many of these children require extended lengths of stay (LOS). Often we are called by hospital-employed utilization review specialists to explain our patients’ need for this. Perhaps because of the Affordable Care Act (ACA) and decreasing reimbursements, many pediatric sub-specialists have stopped accepting elective patients with Medicaid, Medicaid HMO’s 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 children. More often, parents are calling me to provide basic medical care, which I cannot provide as a neurosurgeon. They get no response when they call the hospital-based, “free” clinic, and since they need help immediately, emergency room visits for these children increase and they become “frequent fliers” in the pediatric emergency department.
Transition of care from pediatric to adult neurosurgery is not an issue for me, since I will care for kids with spina bifida and cerebral palsy (CP), who grow up. Here are some strategies I have employed successfully:
- I work with the adult spina bifida patients at Kessler Institute of Rehabilitation, in West Orange, NJ.
- I developed an adult cerebral palsy clinic with Drs. Theodore Feigelman and Michelle Sirak at Morristown Medical Center.
Despite these efforts, I have seen increasing depression and frustration in my patients and their families as services to these patients are increasingly eliminated. State supported programs in New Jersey have been severely cut and adults with developmental disabilities and neurological problems have been dramatically affected. Some very special doctors still spend hours on the phone advocating for our patients’ wheelchairs, medications and orthotics. Dr. Bruce Gans has become very involved on a national level for advocating for patients with disabilities. Dr. Gans, Dr. Feigelman and Dr. Sirak and I are all honored and privileged to take care of adults with CP and spina bifida. We enjoy caring for our patients and our patients truly appreciate the care that we provide.
It was nice to listen to Dr. Wood’s presentation about the transition of care with pediatric neurosurgery patients. It is clear to me that he really cares about his patients and all patients with developmental disabilities and neurological problems. But it is a chilling reminder that our young patients, who are safely sheltered in their “pediatric” medical “homes,” will soon be facing a scary and unavoidable predicament when they grow up. Not all pediatric specialists can care for adults. Some can’t and some won’t, and for some patients, the adult world will not be as happy and protected as their childhood “medical homes” were. I really worry about his when I think about my kids and my patients who are “growing-up” in America.