ReviewNeurology and therapy2013
A review of the social, psychological, and economic burdens experienced by people with spina bifida and their caregivers.
Review in Neurology and therapy, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
23 citing papers in PubMed, 58 citations in OpenAlex.
- Impact on family and parental stress of prenatal vs postnatal repair of myelomeningocele.American journal of obstetrics and gynecology · 2016Trial
- Self-management in youth with spina bifida: predictors of health and quality of life outcomes.Disability and rehabilitation · 2026Article
- Chiari II brain malformation is secondary to open spina bifida.Disease models & mechanisms · 2026Article
- Advances in Fetal Repair of Spina Bifida Integrating Prenatal Surgery, Stem Cells, and Biomaterials.Biomedicines · 2026Review
- Management of sexual health issues in adolescents and young adults with congenital lower urinary tract malformations: concerns emerging from a survey of Italian pediatric urology centers.Frontiers in pediatrics · 2026Article
- Emergency department utilization by spina bifida patients in Florida 2016-2020.Journal of rehabilitation medicine · 2025Article
- Clinical and Demographic Factors Linked to Low-Value Emergency Department Visits in Pediatric Patients With Spina Bifida.The Journal of urology · 2025Article
- Out-of-pocket and indirect expenditure of spina bifida and hydrocephalus patients admitted for inpatient treatment and follow-up at two university-affiliated hospitals in Ethiopia.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2024Article
- Long-term outcome of transanal irrigation for individuals with spina bifida: a 12-year experience study.Techniques in coloproctology · 2024Article
- Unveiling the Therapeutic Potential of Folate-Dependent One-Carbon Metabolism in Cancer and Neurodegeneration.International journal of molecular sciences · 2024Review
- Cost analysis of outpatient services for major external structural birth defects: an ingredient approach in selected hospitals in Kiambu County, Kenya.The Pan African medical journal · 2024Article
- Quality of life in children operated for spina bifida; low- and middle-income country perspective.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2023Article
- Virtually Delivered Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease: Feasibility and Acceptability of HEARTPrep.Pediatric cardiology · 2023Article
- Neural tube defects: a review of global prevalence, causes, and primary prevention.Child's nervous system : ChNS : official journal of the International Society for Pediatric Neurosurgery · 2023Review
- Economic Evaluation of the Community Benefit of the Australian Pregnancy Register of Antiseizure Medications.Neurology · 2023Observational
- LATS1/2 control TGFB-directed epithelial-to-mesenchymal transition in the murine dorsal cranial neuroepithelium through YAP regulation.Development (Cambridge, England) · 2022Article
- Healthcare Burden of Rare Diseases: A Population-Based Study in Tuscany (Italy).International journal of environmental research and public health · 2022Article
- Article
- A Novel Scale for Assessing the Burden of Caregiving for Functionally Compromised Patients: Proposal and Validation.Korean journal of family medicine · 2021Article
- Neural Tube Defects and Associated Factors among Neonates Admitted to the Neonatal Intensive Care Units in Hiwot Fana Specialized University Hospital, Harar, Ethiopia.Global pediatric health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionDespite 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).
methodsPubMed, 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.
resultsAreas 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.
conclusionsThis 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.