Editorial Comment

Abstract

The goal of caring for a child with spina bifida should be to help them live as normal a life as possible. In order to achieve this goal, we as providers may perform procedures that are medically necessary as well as those that help them to become more independent and “fit” better into everyday life. Who decides what is “normal”? The challenge of managing patients with a birth defect that results in varying degrees of physical limitations, bowel and bladder dysfunction, and neurologic issues becomes even more difficult as the child ages. Along with the potential need of undergoing multiple surgeries, these individuals must work toward independence in the face of aging parents or caregivers, integrate themselves into school and work, strive for a sense of belonging into a society filled with discrimination and prejudice, and ultimately be provided adequate access to medical care as they transition into adulthood. Despite advances in medical care, it is still quite difficult to compare outcomes across institutions as we have yet to standardize our approach to patients with spina bifida. The current paper highlights the importance of having a tool to truly measure health-related quality of life in this patient population. As stated, quality of life can be perceived very differently between guardian and patient, yet both reported outcomes are extremely important to us as caretakers to ensure that we are on the right path to counsel and prepare both guardian and child for their journey ahead. Despite the mentioned limitations and need for external validation, this construction of a self-reported health-related quality of life assessment tool is one more step to helping these children communicate how their lives are affected by spina bifida. In return, we can use this information to help personalize our approach to each individual patient to help them achieve the best possible outcomes.