Long-Term Quality of Life for Patients with Spina Bifida

This review explores the literature that currently exists regarding quality of life for patients with spina bifida and assesses screening tools available for practitioners to assess these outcomes. Domains addressed include health related quality of life, relationships, bowel and bladder dysfunction, sexuality, pain, and mood.

Several recent papers have assessed available questionnaires and reviewed findings of key quality of life domains, with varying results.

Historically, the literature has focused on surgical outcomes for patients with spina bifida. Though some authors have begun to explore quality of life for this patient population, particularly in the short-term, a paucity of quality, long-term studies exist that describe quality of life domains or offer potential targets for improvements in outcomes.