The development of a lifetime care model in comprehensive spina bifida care

PURPOSE: To describe the development and implementation of the Children's of Alabama (COA) Spina Bifida (SB) Lifetime-Care-Model, including standardized care protocols and transition plan. METHODS: In 2010, members of the pediatric team at COA began to evaluate limitations in access to care for patients with SB at various stages of life. Through clinic surveys, observations, and caregiver report, a Lifetime-Care-Model was developed and implemented. Partnerships were made with adult medicine colleagues to create an interdisciplinary model at each stage. Since developing this program, it has evolved to include standardized care protocols. RESULTS: Since 2011, there have been 42 prenatal clinics; 114 families received counseling and prenatal care. Of these, 106 have delivered at our center and established care in our pediatric clinic. There are currently 474 patients in the pediatric and 218 in the adult clinics. CONCLUSIONS: Our institutional experience suggests that patients with SB benefit from continuity of care throughout their lifetime. This article describes early failures which led to an evolution in approach and implementation of a Lifetime-Care-Model which results in a smooth transition between all phases of life. We hope that other institutions may adapt and build upon it to create programs unique to their specific patient needs.