The BCH-SBPR: A Multi-disciplinary Registry Collecting Longitudinal Data on Patients with Spina Bifida

Introduction. In the U.S. alone, approximately 1500 infants are born with SB each year. An estimated 166,000 individuals with SB live in the United States. Background. The BCH-SBPR was established in August 2015 to help increase knowledge about new procedures, surgeries and treatment options, growing up with Spina Bifida, and to guide healthcare practices by prospectively studying a cohort of children born with this condition. Objective. The objective of this project is to collect comprehensive longitudinal clinical data (demographics, treatments, and outcomes) from a multi- disciplinary clinic on patients with SB. Design: Prospective longitudinal design. Data collection will occur every six months. Methods. Study subjects include children whose ages range from birth to 35 years with one of the following six SB diagnoses: Myelomeningocele, Meningocele, Lipoma of Spinal Cord, Fatty Thickened Filum, Split Cord Malformation, and Terminal Myelocystocele will be eligible to participate. Results. 653 patients were enrolled in this registry. 635 patients were enrolled in this registry. 66 patients were randomly selected to conduct a descriptive analysis. The mean age was 9.7 (7.63 SD). The majority of the patients\u27 age were between 5 and 13 years old (40 %). The female participants (58.3 % ) were slightly more than male participants (41.7%). The majority was white (56.7%) and None-Hispanic or Latino. 40% of the patient relaid on public insurance. 70% had an MMC and 30 non-MMC diagnoses. The majority of the patients were geographically located in Massachusetts (63.2.%). Therefore, further analysis of descriptive and inferential statistics will be conducted early August 2017. Conclusion. This Registry will provide valuable longitudinal clinical data from approximately 700 patients with SB conditions. The collected data will be used for quality improvement and research projects

An Innovative Nurse-Managed Transition Clinic for Adolescents and Young Adults with Spina Bifida: A Pilot Study

Background. Transition from pediatric to adult care for patients with complex illness is challenging. The Spina Bifida Center at Boston Children’s Hospital (SBC) has approximately 650 patients, of which 25% (N=162) are ≥ 18 years of age. The SBC has not had a structured paradigm for successful transition. A first transition clinic with our pediatric and adult care urology partners was initiated in August 2016. Methods. A 20 question (TRAQ: Transition Readiness Assessment Questionnaire) paper survey was distributed to patients in the first Spina Bifida Transition Clinic at Boston Children\u27s Hospital. TRAQ is a validated, patient-centered questionnaire which providers and families can use to assess youths\u27 readiness to transition to adult care. Results. Seven young adults participated in the Spina Bifida Transition Readiness Assessment Questionnaire (TRAQ). Of the seven patients who took part in the TRAQ survey, 85.7 % (n=6) were males and 14.3% (n=1) were females. 85.7% were white-non-Hispanic or Latino, and 14.3 % were white-Hispanic or Latino. The participants\u27 mean age was 28.1. Of the patients who completed the questionnaires, 61.4 % reported a positive response ( Yes, I have started doing this, or Yes, I always do this when I need to. ) related to their ability level regarding managing medications, appointment keeping, tracking health issues, talking with providers, and managing daily activities. 16.4% reported a negative response ( No, I do not know how, ) related to the domains mentioned above, and 22.1% had a negative response but were either willing to learn or already learning how to manage and develop skills needed for the transition to adult care. Conclusion. Transition is a multi-step process. We found that successful transition for the patient and family requires investment from pediatric and adult providers, involvement of social work and the support of local spina bifida association