Pediatric Neurosurgery Patients Need More than a Pediatric Neurosurgeon. Part II. A Clinical Report: In the USA Lack of Parent/Caregiver Compliance Interferes with the Patient Care Sequence.

We have previously reported on the initiation, development, and preliminary results of a comprehensive multidisciplinary team for the long-term management of children with neurosurgical conditions other than spina bifida. This report addresses the follow-up of the care of these patients and identifies limitations in the care sequence including, but not limited to, lack of parental/caregiver compliance, unmet educational needs, and medical insurance issues.

Initiating a pediatric spasticity program with multispecialty and multi-institutional support: a preliminary report.

We describe the initiation and development of a comprehensive multidisciplinary and multi-institutional program for the evaluation and management of youth with spasticity. A descriptive step-by-step process of the administrative and organizational sequence of the development of the program is delineated. The Spasticity Clinic now meets regularly, and multiple diagnostic and treatment modalities are performed. This experience may assist those that wish to initiate a similar venue for youth with spasticity.

Pediatric neurosurgery patients need more than a neurological surgeon: a clinical experience.

The Division of Pediatric Neurosurgery of the University of Florida College of Medicine Jacksonville initiated and developed a multidisciplinary comprehensive team for the management of patients with a neurosurgical condition other than spina bifida. This report relates the rationale and stages of development of a multidisciplinary team to facilitate the health care and special needs of these children.

Creating and developing a comprehensive pediatric physical medicine program: A 10-year experience.

PURPOSE: A multi-institutional and multidisciplinary pediatric physical medicine rehabilitation healthcare system was developed to meet regional patient needs. METHODS: A ten-year experience meeting regional patient care needs in northeast Florida and southern Georgia is described. RESULTS: A collaborative effort of multiple institutions resulted in the recruitment of a pediatric physical medicine and rehabilitation physician in June 2009, followed by planning stages that included initiation, development, and structuring of the program. PHASE I: selection of clinic spaces, training of existing staff, creating specialized programs. PHASE II: recruitment of an additional physician and dedicated advanced practice registered nurse, hospital nursing and radiology personnel training, development of protocols for specific disease entities, formulating a team approach for patient care, development of dedicated clinics for disease processes. Phase III: incorporating care into existing multidisciplinary clinics, education of existing physical, occupational, and speech therapists in dedicated remote clinics on early detection and management of specialty issues. Phase IV: ongoing education provided by rehabilitation faculty. Quality improvement aspects included outcome studies, coordinating with the Cerebral Palsy Research Network databank, and others. All phases overlapped in time and are ongoing, adapting to new needs. CONCLUSION: A collaborative program can be created to provide comprehensive pediatric physical medicine and rehabilitation in regions lacking such a system.

Concepts on childhood microcrania: a clinical overview for the neurosurgeon who is evaluating a child with a small head.

PURPOSE: Infants and children with microcrania are referred to pediatric neurosurgeons for evaluation and treatment of possible craniosynostosis and other disorders. We present an approach to these children to facilitate the appropriate clinical evaluation and management. METHODS: We reviewed our experience and the literature on infants and children with microcephaly, and developed a management strategy for these children when seen in the University of Florida Division of Pediatric Neurosurgery. RESULTS: We request the same sex parent to accompany the child for their consultation. If the head circumference of the child matches that of the same sex parent in percentiles, and there are no other abnormalities, no further assessment or studies are performed. If there is a disproportionate head size to that of the same sex parent and/or other structural abnormalities are present, the child is referred to clinical genetics for further assessment. CONCLUSIONS: When patients are referred to pediatric neurosurgery for microcrania, their head size should be compared to that of the same sex parent. This will facilitate the diagnosis of familial microcephaly, and if no other abnormalities are noted, no further studies or surgical interventions are necessary.

Creating a working group for prenatal diagnosis and management as a venue to facilitate neurosurgery health care delivery.

BACKGROUND/AIMS: To facilitate the communication and engagement with the parents of a fetus with a neurosurgical condition, as well as subsequent care of the newborn, the Division of Pediatric Neurosurgery of the University of Florida College of Medicine Jacksonville created a multidisciplinary working group. METHODS: The University of Florida Division of Pediatric Neurosurgery performed a staged process to develop a multidisciplinary prenatal working group. Phase I: establish communications with perinatology, neonatology and radiology. Phase II: initiate clinical working sessions with neurosurgery, neonatology, perinatology, radiology. Phase III: the working sessions were progressively expanded to include other specialties of interest. RESULTS: This report addresses the development and the subsequent monthly meetings that were held between March 2004 and October 2008. There were a total of 246 pregnancies in which a significant fetal condition was present. Of these, 53 generated neurosurgical consultations on the basis of fetal imaging (ultrasound and/or MRI). Those that required postnatal surgery were able to have timely coordinated scheduled delivery and subsequent neurosurgical procedures. CONCLUSIONS: If neurosurgeons do not have access to a multidisciplinary prenatal working group, they may take the lead and facilitate the establishment of such a team approach. This can lead to better prenatal communications with the parents/families, coordination of delivery and timely postnatal neurosurgical management.

Ultrasound-aided fixation of biodegradable implants in pediatric craniofacial surgery.

PURPOSE: Bioresorbable implant systems have been used for the rigid fixation of cranial and facial bones. A relatively recent advancement has been the fixation of these implants using an ultrasonic device. Published reports with such a device in pediatric craniofacial surgery have been limited. We report our experience with ultrasound-aided fixation of bioresorbable implants in the craniofacial surgery of children. METHODS: We retrospectively examined the clinical information, complications and outcome following the use of a commercially available ultrasound-aided bioresorbable implant system (SonicWeld Rx™, KLS Martin, Jacksonville, Fla., USA) during craniofacial surgery by University of Florida College of Medicine Jacksonville surgeons. Follow-up was obtained via clinical examination or telephone interview. RESULTS: Over a period of 3 years, 37 pediatric patients (age range: 2 months to 16 years) had placement of these implants for immediate bony fixation during craniofacial procedures. Pathology consisted mainly of craniosynostosis (n = 19), and trauma (n = 16). Twenty-eight had combined craniofacial procedures; 9 patients had facial procedures. Reoperation was performed for: wound infection (n = 1), plate extrusion (n = 1). Delayed subcutaneous plate-related swelling was seen in 5 patients (4 were infants) and had a benign clinical course. Good cosmetic outcomes were seen in all patients. CONCLUSIONS: The use of a bioresorbable implant system with ultrasound-aided pin fixation in pediatric craniofacial surgery achieves rapid fixation with minimal morbidity and good cosmetic outcome. This system is easy to use and provides reliable stability in the setting of pediatric trauma and craniosynostosis.

Advanced registered nurse practitioners and physician assistants in the practice of pediatric neurosurgery: a clinical report.

OBJECTIVE: This report addresses the clinical experience of the Division of Pediatric Neurosurgery with dedicated nurse practitioners and a physician assistant (PA) in outpatient and inpatient health care delivery, including surgical activities, as well as participation with the neurosurgery call schedule, quality improvement, teaching, and clinical research activities. METHODS: We report on the activities of allied health personnel in the Division of Pediatric Neurosurgery for the purpose of identifying the current and future role for health care delivery, related to the care of the child with a neurosurgical condition. This addresses the participation of 2 advanced registered nurse practitioners (ARNPs) and a PA in the outpatient and inpatient setting, call schedule, interventions in and out of the operating room, quality improvement sessions, continuing medical education, clinical research, clinical databases, presentations in meetings, teaching, and scientific publications. RESULTS: This report covers the period from September 2003 (when the division was initiated) to February 2011. The division currently consists of 3 pediatric neurosurgeons, 2 ARNPs and 1 PA. The ARNPs/PA have participated in the pediatric neurosurgery clinic held 5 half-days per week, the monthly multidisciplinary clinics (Spinal Defects Clinic, Pediatric Neurosciences Clinic, and the Fetal Diagnosis and Therapy Center working group), and inpatient care, as well as assisting in operative interventions. They participated in the on-call schedule and attended the monthly quality improvement sessions of the division in addition to presenting papers and topics in the monthly continuing medical education session. The PA maintained a computerized database of operative interventions, coding, morbidities, and outcomes. All were involved in teaching activities. They prepared preoperative and postoperative orders and practice guidelines, and they were also involved in the preparation of the database of institutional clinical research projects. They have presented posters in a total of 9 national and 2 international meetings, and have co-authored 8 manuscripts published in peer review journals. CONCLUSION: The ARNP/PA members have been active participants in all functions of the Division of Pediatric Neurosurgery. They have facilitated the work of the faculty in day-to-day activities and enhanced the scope of divisional activities, providing a team approach for the care of the patients, families, and caretakers.

Initiating, developing and evaluating a comprehensive spinal defects clinic: a clinical report.

OBJECTIVE: The Division of Pediatric Neurosurgery of the University of Florida College of Medicine - Jacksonville developed a multidisciplinary clinic for the better management of pediatric patients with spinal defects. The purpose of this report is to assist neurosurgeons in those regions and countries where there are no spinal defects clinics (SDC). METHODS: We induced a staged process to develop a comprehensive multidisciplinary clinic for pediatric patients with spinal defects: phase I - during December 2003 to June 2004, the organizational planning, multiinstitutional recruitment of health care personnel and location of clinic space occurred; phase II - the SDC sessions initiated in June 2004 and have consequently been held on a monthly basis; phase III - this consisted of a quality improvement program during which parents/caregivers were surveyed. RESULTS: Between June 2004 and February 2009, 139 patients/families were evaluated. Diagnoses included: myelomeningocele (102), lipomeningocele (18), meningocele (1), myelocystocele (3), spina bifida occulta (9), spinal trauma (2), spasticity of cerebral origin (2), spinal arachnoid cyst (1) and syringomyelia (1). During this period, 110 parents/caregivers were questioned on how the SDC assisted in the care of their child. A total of 62% (of 53 responders) indicated the SDC allowed them to be better informed about their child's medical conditions and short/long-term health care plans, 52% stated health care needs were better coordinated than prior to their participation in the SDC, and 26% responded that the initiation of the clinic had reduced their medical care travel. CONCLUSIONS: Pediatric neurosurgeons may take the lead in organizing a multidisciplinary clinic for the betterment of these children. Multidisciplinary care settings facilitate health care delivery and lead to better patient care as perceived by parents/caregivers.

Titanium screws as fiducial markers for image-guided stereotactic proton irradiation in pediatric central nervous system tumors: a technical report.

OBJECTIVES: Fiducial markers (FM) have been used to enhance the accuracy of radiation therapy in central nervous system (CNS) tumors. Recently, image-guided radiotherapy utilizing FM has been used in proton therapy of CNS tumors. We describe our surgical technique of placement of titanium screws as cranial FM in children undergoing proton therapy for CNS tumors. METHODS: Records of children undergoing cranial fiducial placement for proton therapy were reviewed. Details of the adjuvant treatment of their CNS tumors were examined. Indications for placement of the FM, the technique of placement as well as the operative data and complications were reviewed. RESULTS: Twelve children, aged 10 months to 16 years (mean: 7.6 years), underwent FM placement. When available, the patients had their proton irradiation as part of or according to Children's Oncology Group protocols. All patients had implantations of FM onto bilateral frontal and parietal bone sites, using commercial titanium screws, in a noncollinear fashion. Ten operations were performed on an outpatient basis. There were no surgery-related complications. FM facilitated the cranial alignment for targeting of proton irradiation in all patients. CONCLUSIONS: Commercially available titanium screws can be used as FM for cranial proton radiotherapy. The procedure can be done quickly and safely on an outpatient basis. Pediatric neurosurgeons can perform this procedure on their patients at their home institutions to facilitate treatment at regional proton therapy centers.

Socioeconomic patient benefits of a pediatric neurosurgery telemedicine clinic.

OBJECTIVE: The objective of this study was to examine the socioeconomic benefits to the patients and families attending a regional pediatric neurosurgery telemedicine clinic (PNTMC). METHODS: A PNTMC was organized by the Division of Pediatric Neurosurgery of the University of Florida College of Medicine-Jacksonville based at Wolfson Children's Hospital and by the Children's Medical Services (CMS) to service the Southeast Georgia Health District. Monthly clinics are held with the CMS nursing personnel at the remote location. A retrospective review of the clinic population was performed, socioeconomic data were extracted, and cost savings were calculated. RESULTS: Clinic visits from August 2011 through January 2017 were reviewed. Fifty-five patients were seen in a total of 268 initial and follow-up PNTMC appointments. The average round-trip distance for a family from home to the University of Florida Pediatric Neurosurgery (Jacksonville) clinic location versus the PNTMC remote location was 190 versus 56 miles, respectively. The families saved an average of 2.5 hours of travel time and 134 miles of travel distance per visit. The average transportation cost savings for all visits per family and for all families was $180 and $9711, respectively. The average lost work cost savings for all visits per family and for all families was $43 and $2337, respectively. The combined transportation and work cost savings for all visits totaled $223 per family and $12,048 for all families. Average savings of $0.68/mile and $48.50/visit in utilizing the PNTMC were calculated. CONCLUSIONS: Managing pediatric neurosurgery patients and their families via telemedicine is feasible and saves families substantial travel time, travel cost, and time away from work.

Aggressive management of shunt infection: combined intravenous and intraventricular antibiotic therapy for twelve or less days.

OBJECTIVE: This report is limited to patients with a single cerebrospinal fluid (CSF) shunt infected by a single organism, and compares two treatment protocols. METHODS: In the initial protocol (1975-1991), patients underwent removal of the shunt system and received intravenous and intraventricular antibiotics. Intraventricular antibiotics were administered twice daily to those with external ventricular drainage. When CSF was cultured 48 h off all antibiotics and found to be sterile at 24 h of incubation, a new shunt was inserted. Follow-up CSF cultures were obtained in all patients between 1-6 months following placement of the new shunt. RESULTS: There were 25 patients (ages 1 month to 16 years; mean +/- SD: 23 +/- 4.0 months). CSF obtained from the shunt yielded the following: Staphylococcus epidermidis (19), Staphylococcus aureus (2), Streptococcus species (2), Serratia marcescens (1), and Propionebacterium species (1). The duration of intravenous antibiotics was 7-12 days (mean +/- SD: 9.7 +/- 1.3 days), and intraventricular antibiotic therapy was 6.2 +/- 1.7 days. Total hospital stay was 15.2 +/- 2.3 days. The follow-up period was 7.7 +/- 3.6 years. Following the initial protocol in another 15 patients (1992-2004), the treatment regime was modified in that intraventricular antibiotics were administered once daily in patients with external ventricular drainage, and the CSF was cultured at 24 h off antibiotics, instead of 48 h. Results were similar to the initial protocol with respect to days of antibiotic therapy and hospital stay. CONCLUSION: Based on our retrospective nonrandomized series, we believe patients with a single shunt and noncompartmentalized hydrocephalus can be successfully treated without a prolonged antibiotic course and lengthy hospital stay.

Spinal peritoneal shunts for conditions other than hydrocephalus and pseudotumor cerebri: a clinical report.

BACKGROUND: To treat with minimally invasive surgery, recurrent spinal arachnoid cysts, progressive syringomyelia, cranial and spinal cerebrospinal fluid fistulas. PATIENTS AND METHODS: This is a clinical report that describes the management of recurrent spinal arachnoid cysts (2 patients), progressive syringomyelia (11 patients), postoperative spinal cerebrospinal fluid fistulas (15 patients) and postoperative cranial cerebrospinal fluid fistulas (2 patients) that were treated with spinal peritoneal shunts. The spinal arachnoid cyst and syringomyelia patients promptly resolved the signs and symptoms. The cranial and spinal cerebrospinal fluid fistula patients had a resolution of the fistulas. The shunts placed for spinal arachnoid cysts and syringomyelia required permanent implantation. The shunts placed for cerebrospinal fluid fistulas were temporary. All were removed, except for 2 patients whose parents did not want further operative interventions. CONCLUSION: Spinal peritoneal shunts have a variety of clinical applications and should be considered by neurological surgeons for disease processes other than communicating hydrocephalus and pseudotumor cerebri.

Primary treatment with temporary subcutaneous peritoneal shunts for postoperative spinal cerebrospinal fluid fistulas.

OBJECT: The authors describe a series of attempts to treat with minimally invasive surgery cerebrospinal fluid (CSF) fistulas that develop following operations of the spine for congenital anomalies. METHODS: Sixteen patients in whom CSF fistulas developed following repair of congenital spinal disorders (nine lipomeningoceles, one arachnoid cyst, two myelocystoceles, three tethered cords after myelomeningocele repair, and one scoliosis surgery) underwent placement of a temporary subcutaneous peritoneal shunt. The CSF fistulas resolved in all instances. Two patients required revision of the shunts prior to resolution of the fistula and subsequent shunt removal. Three patients suffered a lumbar wound or shunt infection, which necessitated shunt removal. Subsequent to the removal, the infection resolved and there was no recurrence of the CSF leak. Fourteen patients had their shunts completely removed within 1 year of placement. Two patients did not have their shunts removed because parental consent for the additional surgery was not given. CONCLUSIONS: Postoperative subcutaneous CSF fistulas of the spine can be successfully treated using temporary subcutaneous peritoneal shunts. This procedure reduces hospital stay and obviates the need for more extensive or multiple surgical interventions.

Pediatric neurosurgery telemedicine clinics: a model to provide care to geographically underserved areas of the United States and its territories.

OBJECTIVE The author describes the creation, structuring, and development of a pediatric neurosurgery telemedicine clinic (TMC) to provide telehealth across geographical, time, social, and cultural barriers. METHODS In July 2009 the University of Florida (UF) Division of Pediatric Neurosurgery received a request from the Southeast Georgia Health District (Area 9-2) to provide a TMC to meet regional needs. The Children's Medical Services (CMS) of the State of Georgia installed telemedicine equipment and site-to-site connectivity. Audiovisual connectivity was performed in the UF Pediatric Neurosurgery office, maintaining privacy and HIPAA (Health Insurance Portability and Accountability Act) requirements. Administrative steps were taken with documentation of onsite training of the secretarial and nursing personnel of the CMS clinic. Patient preregistration and documentation were performed as required by the UF College of Medicine-Jacksonville. Monthly clinics are held with the CMS nursing personnel presenting the pertinent clinical history and findings to the pediatric neurosurgeon in the presence of the patient/parents. Physical findings and diagnostic studies are discussed, and management decisions are made. RESULTS The first TMC was held in August 2011. A total of 40 TMC sessions have been held through January 2016, with a total of 43 patients seen: 13 patients once; 13 patients twice; 8 patients for 3 visits; 2 for 4 visits; 2 for 6 visits; 2 for 5 visits; 2 for 7 visits; and 1 patient has been seen 8 times. CONCLUSIONS Pediatric patients in areas of the continental US and its territories with limited access to pediatric neurosurgery services could benefit from this model, if other pediatric neurosurgery centers provide telehealth services.

Young adults with spina bifida transitioned to a medical home: a survey of medical care in Jacksonville, Florida.

OBJECT The transition of the young adult with spina bifida (YASB) from pediatric to adult health care is considered a priority by organized pediatrics. There is a paucity of transition programs and related studies. Jacksonville Health and Transition Services (JaxHATS) is one such transition program in Jacksonville, Florida. This study's purpose was to evaluate the health care access, utilization, and quality of life (QOL) of a group of YASBs who have transitioned from pediatric care. METHODS A survey tool addressing access to health care and quality of health and life was developed based on an established survey. Records of the Spinal Defects Clinic held at Wolfson Children's Hospital and JaxHATS Clinic were reviewed and YASBs (> 18 and < 30 years old) were identified. RESULTS Ten of the 12 invited YASBs in the Jacksonville area completed the surveys. The mean age of respondents was 25.1 years. All reported regular medical home visits, 8 with JaxHATS and 2 with other family care groups. All reported easy access to medical care and routine visits to spina bifida (SB) specialists; none reported difficulty or delays in obtaining health care. Only 2 patients required emergent care in the last year for an SB-related medical problem. Seven respondents reported very good to excellent QOL. Family, lifestyle, and environmental factors were also examined. CONCLUSIONS In this small group of YASBs with a medical home, easy access to care for medical conditions was the norm, with few individuals having recent emergency visits and almost all reporting at least a good overall QOL. Larger studies of YASBs are needed to evaluate the positive effects of medical homes on health and QOL in this population.

Terminal myelocystocele.

OBJECT: The authors describe the cases of eight patients with terminal myelocystoceles and report on their initial diagnoses, neuroimaging findings, surgical procedures, and clinical follow-up examinations. METHODS: There were seven girls and one boy. The initial age at diagnosis ranged from prenatal age (determined by imaging) to 14 years. Operative correction was performed from 6 weeks to 14 years of age. One patient presented with a large prevertebral (intraabdominal) meningocele. Four patients have associated abdominal wall defects and are significantly handicapped. Two are wheelchair bound and the other two ambulate with prosthetic devices; all are incontinent. The four patients without abdominal wall defects are fully ambulatory; one wears an ankle-foot orthosis. One patient has normal bowel and bladder functions, and the other three require intermittent clean catheterization. No patient to date has had clinical evidence of retethering, although a low-set conus medullaris and residual lipoma were visible on postoperative neuroimaging. No patient in this series had hydrocephalus or Chiari malformation. CONCLUSIONS: It is concluded that patients with myelocystoceles without abdominal wall defects have a favorable neurological outcome when compared with those having ventral wall defects.

Prenatal assignation of lesion levels in neural tube defects by using ultrasonography. Case report and review of the literature.

Myelomeningoceles are routinely diagnosed prenatally by using ultrasonography. Because the level of the neural defect has been shown to correlate with functional and cognitive outcome in infants with myelomeningocele, it is of prognostic importance to identify the level prenatally. The authors report on a case in which the postnatal vertebral level of the myelomeningocele was more rostral than expected based on prenatal imaging.