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.