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Introduction Despite measures to reduce the incidence of neural tube defects (NTDs), the rate of decline has not been as dramatic as expected. At least 300,000 newborns worldwide are known to be affected by NTDs each year. This comprehensive literature review summarizes the human and economic burden of NTDs to patients and caregivers, with particular focus on spina bifida (SB). Methods PubMed, PsycINFO, and Embase were searched for studies from January 1976 to November 2010 that included clinical terms, such as NTD, and at least one patient-reported outcome or cost term. A conceptual model was also developed. Results Areas of peoples’ lives affected by SB included physical and role functioning, activities of daily living, bodily pain, vitality, emotional functioning, mental health, self-esteem, self-image, social functioning, relationships, and sexual functioning. Areas of caregivers’ lives affected included activities of daily living, work impact, time consumption, parental responsibilities (including responsibilities to other children), confidence, feelings and emotions, mental health, stress, social impact, psychological adjustment, relationships (with SB child, siblings, other family members), social support, coping strategies, and termination decisions. Cost burdens on patients and caregivers also include out-of-pocket costs, lost wages, or household production due to increased morbidity and mortality, transportation and other nonmedical costs. Conclusions This review highlights the need to provide care and support to individuals with SB and their caregivers. Results also emphasize the importance of effective long-term public health campaigns and/or newer strategies to prevent NTDs, such as SB.

Introduction Neural tube defects (NTDs) are the second most common birth defects. Spina bifida (SB) and anencephaly make up approximately 90% of total NTDs. Given the number of infants born with an NTD each year, anyone who provides unpaid care for the child (especially caregivers) is affected. This literature review explores the humanistic burden on caregivers of people with SB, specifically myelomeningocele. Methods A search using PubMed, PsycINFO, and Embase was performed to find studies from 1976 to 2010. Interpretative phenomenological analysis was performed on qualitative data and relevant extracts from the data were collated to form master themes. Results A total of 168 abstracts met the inclusion and exclusion criteria. Of these, 25 articles related to caregivers of individuals with SB. Four master themes emerged: initial diagnosis, living with an individual with SB, social support, and coping. Different aspects of caregivers’ lives were found to be affected by caring for a child with SB, including activities of daily living, work impact, time consumption, parental responsibilities, confidence, feelings and emotions, mental health, stress, social impact, psychological adjustment, and relationships. Conclusion NTDs, such as SB, present a multitude of issues to caregivers. Issues that affect caregivers of individuals with SB must be addressed in order to reduce the considerable burden that SB places on the caregiver. Continued and enhanced support from health services and patient advocacy groups is needed. For example, providing additional information, support, and empathy can help parents prepare themselves for dealing with the needs of a child with SB over their lifetime.