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Birth Defects Research Jan 2020Maternal pregestational diabetes mellitus (PGDM) is a known risk factor for neural tube defects. We examined the association between maternal PGDM and spina bifida in...
BACKGROUND
Maternal pregestational diabetes mellitus (PGDM) is a known risk factor for neural tube defects. We examined the association between maternal PGDM and spina bifida in the offspring using PGDM status from medical records in Finland.
METHODS
We conducted a nationally representative, multiregistry, population-based case-control study in Finland. Cases were included if they were live or stillborn infants and diagnosed with spina bifida and delivered between years 2000 and 2014 in Finland. Controls were Finnish infants without spina bifida or other major structural birth defects and delivered during the same time period as cases. Clinical and demographic data were obtained by linking multiple national health registers and census. Crude and adjusted odds ratios (ORs) and 95% confidence intervals (CI) for PGDM were estimated using logistic regression analysis. Interaction by maternal obesity was examined.
RESULTS
Our study included 181 spina bifida cases (61% isolated) and 876,672 controls. Overall, 2.2% percent of all case, and 0.5% of control mothers, had PGDM during pregnancy. Maternal PGDM was significantly associated with an increased odds of spina bifida (adjusted OR 4.35; 95% CI 1.37, 13.82). A similar association was found in our subanalysis on isolated spina bifida cases (adjusted OR 4.41; 95% CI 1.07, 18.24). There was no significant interaction by maternal obesity.
CONCLUSIONS
Maternal PGDM was positively associated with spina bifida in Finland, and maternal obesity did not modify this effect. We lacked information on maternal PGDM for electively terminated and spontaneously aborted cases; results should be interpreted with caution.
Topics: Case-Control Studies; Databases, Factual; Diabetes Mellitus; Diabetes, Gestational; Female; Finland; Humans; Logistic Models; Mothers; Neural Tube Defects; Odds Ratio; Pregnancy; Pregnancy in Diabetics; Risk Factors; Spinal Dysraphism
PubMed: 31774241
DOI: 10.1002/bdr2.1624 -
Child's Nervous System : ChNS :... Aug 2022Spina bifida is a type of a neural tube defect which affects 243.14 per 100,000 babies in Asia. Research articles on spina bifida have increased in the recent years....
BACKGROUND
Spina bifida is a type of a neural tube defect which affects 243.14 per 100,000 babies in Asia. Research articles on spina bifida have increased in the recent years. However, no study has focused on the research trends in this field in Asia.
METHODS
A systematic review of literature on spina bifida in Asia was performed using the Scopus database from inception to 2020. All published studies on spina bifida conducted in or published by authors from Asia were included in our analysis. Bibliometric information was obtained from Scopus and bibliometrics diagrams were created using VOSviewer software.
RESULTS
A total of 652 articles were obtained in this study. The number of publications showed an upward trend starting 2000s. The country with the greatest number of publications was Japan while All India Institute of Medical Sciences was the most productive institution in spina bifida research in Asia. The current focus of this field in Asia was prevalence of spina bifida, prenatal diagnosis, folic acid supplementation, and complications of spina bifida. Future areas of research in spina bifida include the genetic basis of neural tube defects and the use of stem cell technology as therapies for spina bifida.
CONCLUSION
This is the first bibliometric analysis on spina bifida in Asia. It showed the trend and future areas of research on spina bifida in Asia. Despite the increase in scientific literature on spina bifida research, more research outputs and collaborations are needed especially in developing countries in Asia.
Topics: Bibliometrics; Female; Humans; Neural Tube Defects; Pregnancy; Prenatal Diagnosis; Prevalence; Spinal Dysraphism
PubMed: 35474541
DOI: 10.1007/s00381-022-05527-2 -
Journal of Pediatric Rehabilitation... 2023Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube...
Whether it is for collaboration on folic acid fortification or the standardization of care efforts concerning neurogenic bowel dysfunction, a global forum on neural tube defects related issues is needed. Propitiously, the 2023 Spina Bifida World Congress sponsored by the Spina Bifida Association (SBA) was a catalyst for transnational dialog in the field of spina bifida (SB) research. Concurrently, the Journal of Pediatric Rehabilitation Medicine (JPRM) provides a platform for both international research as well as numerous clinical and educational projects, such as The Lifespan Bowel Management Protocol, and social interventions taught through the American Academy of Pediatrics' Spina Bifida Transition ECHO. Through this open access issue, work by colleagues in Ethiopia, the Nordic countries, and Switzerland, as well as among other transnational populations is highlighted. The development of the Spina Bifida Global Learning Collaborative is also showcased, representing a training initiative across four continents. Correspondingly in this issue, JPRM published an update to the Transition Guidelines for the Care of People with Spina Bifida. The clinical guidelines are a product of the SBA Collaborative Care Network cooperative agreement with the National Center on Birth Defects and Developmental Disabilities in the Centers for Disease Control and Prevention. While colleagues across the globe remain committed to native, immigrant, and displaced populations of individuals affected by SB, JPRM will continue to distribute premier research in multidisciplinary care, education, and advocacy.
Topics: Pregnancy; Female; Humans; Child; United States; Prenatal Care; Longevity; Spinal Dysraphism; Neural Tube Defects; Emigrants and Immigrants
PubMed: 38160377
DOI: 10.3233/PRM-239020 -
Journal of Pediatric Rehabilitation... 2023As with the wide range in spina bifida (SB) incidence rates across nations, there is also wide variance in topics encountered by clinicians today. Both the wide variance...
As with the wide range in spina bifida (SB) incidence rates across nations, there is also wide variance in topics encountered by clinicians today. Both the wide variance in SB incidence rates and the wide diversity of topics to be addressed provide the backdrop for any dialogue among professionals serving this population. On the international stage, the World Congress on Spina Bifida Research and Care has been the only conference dedicated solely to research, practical challenges, and real-life solutions for those living with SB, their families, and caregivers. As a conference with a clear sense of the growing global village, the 2023 congress showcased innovative research from junior to preeminent investigators. Topical areas included urology, neurosurgery, global health, prenatal surgery, and transition to adult care amid others. Ultimately, through the dissemination of a compendium of conference abstracts, we hope that professionals will be aided and inspired to continue to improve the education, advocacy, and care among the many communities of individuals affected by SB globally.
Topics: Adult; Pregnancy; Female; Humans; Spinal Dysraphism; Neurosurgery
PubMed: 37270821
DOI: 10.3233/PRM-239016 -
Journal of Pediatric Rehabilitation... 2020Bowel dysfunction, such as constipation and fecal incontinence, has a significant impact on health, activities of daily living, and quality of life among people with... (Review)
Review
PURPOSE
Bowel dysfunction, such as constipation and fecal incontinence, has a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Secondary complications may result from bowel dysfunction and include urologic dysfunction, loss of skin integrity, shunt (hydrocephalus) function, as well as loss of social opportunities and employability.
METHODS
Using a consensus building methodology, the guidelines for management of bowel dysfunction in spina bifida were written by experts in the field of spina bifida and bowel function and care.
RESULTS
The evidence-based guidelines are presented in table format and provide age-specific recommendations to achieve fecal continence without constipation. Recommended treatments are presented from least to most invasive options. Literature supporting the recommendations and the interval research published to date is also presented.
CONCLUSION
These guidelines present a standardized approach to management of bowel dysfunction in spina bifida. Bowel management in children and young adults with spina bifida is limited by variability in clinical practice and paucity of robust research in neurogenic bowel. Collaborative multi-institutional efforts are needed to overcome research barriers and provide innovative solutions.
Topics: Adolescent; Adult; Child; Child, Preschool; Female; Humans; Infant; Infant, Newborn; Intestinal Diseases; Male; Practice Guidelines as Topic; Spinal Dysraphism; Young Adult
PubMed: 33252093
DOI: 10.3233/PRM-200724 -
Journal of Pediatric Rehabilitation... 2020Sexual development is not only comprised of the changes to a person's body during puberty; it is a part of social development and should be considered in the context of... (Review)
Review
Sexual development is not only comprised of the changes to a person's body during puberty; it is a part of social development and should be considered in the context of basic and routine human desires for connectedness and intimacy, beliefs, values and aspirations. As is true for everyone, it is important that individuals with spina bifida have opportunities to acquire developmentally appropriate, relevant and accurate sexual health knowledge. Those with spina bifida need to be able to negotiate sexual desire, intimacy and sexual expression. They also need education about their sexual health and how to limit the negative outcomes of sexual activity related to sexually transmitted infections, unplanned pregnancy or sexual coercion, violence, abuse or exploitation. This article discusses the Spina Bifida Sexual Health and Education Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida using the World Health Organization's framing of sexual health and reviews the literature on sexual health and education for individuals with spina bifida.
Topics: Adolescent; Adult; Child; Child, Preschool; Female; Humans; Infant; Infant, Newborn; Male; Practice Guidelines as Topic; Sex Education; Sexual Health; Spinal Dysraphism; Young Adult
PubMed: 33361622
DOI: 10.3233/PRM-200743 -
Pediatric Emergency Medicine Practice Apr 2021Children with syndromes often access emergency services and they may present unique challenges for emergency clinicians. This issue reviews 3 pediatric syndromes-spina... (Review)
Review
Children with syndromes often access emergency services and they may present unique challenges for emergency clinicians. This issue reviews 3 pediatric syndromes-spina bifida, Down syndrome, and Marfan syndrome-each of which are associated with unique emergent conditions. Patients with spina bifida have chronic colonization of bacteria in the urine, and antibiotics are not always needed. Children with Down syndrome are at risk for neurologic injury with minor trauma; advanced imaging such as magnetic resonance imaging may be needed in select cases. For children in whom a connective tissue disorder is suspected, aortic dissection and spontaneous pneumothorax must be considered. This issue reviews the pitfalls in interpreting routine testing and discusses the diagnostic and therapeutic approaches helpful in evaluating children with syndromes.
Topics: Child; Down Syndrome; Emergency Service, Hospital; Humans; Marfan Syndrome; Spinal Dysraphism; Syndrome
PubMed: 33779129
DOI: No ID Found -
Acta Paediatrica (Oslo, Norway : 1992) Sep 2022The aim of this scoping review was to summarise findings concerning cognitive characteristics in people with spina bifida and explain how cognitive factors influence... (Review)
Review
AIM
The aim of this scoping review was to summarise findings concerning cognitive characteristics in people with spina bifida and explain how cognitive factors influence activities and participation in different areas and stages of life.
METHODS
PubMed, Psych INFO, ERIC, Scopus, CINAHL and the Cochrane Library were searched for English language papers published in 2000-2018. A total of 92 papers were selected and quality was assessed according to the McMaster criteria. The results were presented related to body functions, activity and participation from the International Classification of Function and Health, ICF.
RESULTS
People with spina bifida tended to have a lower IQ than those without. The majority also had cognitive difficulties manifested in problems with language, perception, memory, executive and attentional functions. Those difficulties affected activity and participation in all life domains in ICF. This may affect medical adherence and responsibility and by extension the prevention of secondary complications.
CONCLUSION
It is important for caregivers, professionals and especially individuals with spina bifida themselves to understand and handle both physical and cognitive consequences in all life circumstances. Having insight into one's own assets and difficulties paves the way to managing life challenges, which could enhance health, self-management and participation in society.
Topics: Attention; Cognition; Humans; Social Behavior; Spinal Dysraphism
PubMed: 35608513
DOI: 10.1111/apa.16420 -
The Pan African Medical Journal 2022
Topics: Humans; Spinal Dysraphism; Meningomyelocele
PubMed: 36338552
DOI: 10.11604/pamj.2022.42.258.35894 -
Pediatrics Sep 2018Patients with spina bifida (SB) typically develop serious secondary conditions and undergo surgical procedures related to neurologic disorders, orthopedic abnormalities,...
BACKGROUND AND OBJECTIVES
Patients with spina bifida (SB) typically develop serious secondary conditions and undergo surgical procedures related to neurologic disorders, orthopedic abnormalities, bladder and bowel dysfunction, and skin breakdown. In this study, we describe the age distribution of common surgical procedures and health outcomes in patients with SB.
METHODS
Using serial cross-sectional data from the National Spina Bifida Patient Registry (2009-2013; = 4664), we examined surgical procedures (gastrointestinal, neurologic, orthopedic, skin, urologic, and other) and health outcomes (fecal continence, urinary continence, skin breakdown, and ambulation status) of patients with SB by age and SB type (myelomeningocele and nonmyelomeningocele).
RESULTS
All patients who were enrolled had available health outcome data, and 81.5% ( = 3801) of patients had complete surgical procedure data, which totaled 18 891 procedures across their lifetimes. Almost all procedures (91.4%) occurred among participants with myelomeningocele SB. For both types of SB, the distribution of procedures varied by age. The most frequent procedures were neurologic, with approximately half (53%) occurring in patients <1 year of age; orthopedic and urologic procedures followed in frequency but tended to occur at older ages. The health outcomes for patients with myelomeningocele SB revealed lower frequencies of positive health outcomes than those for patients with nonmyelomeningocele SB across all age groups. Overall, the rates of fecal and urinary continence and skin breakdown increased with age whereas the ability to ambulate declined with age.
CONCLUSIONS
Understanding the surgical procedures and health outcome variations by age and SB type can help clinicians and populations that are affected set expectations regarding the occurrence of these procedures and the outcomes throughout the patients' life spans.
Topics: Adolescent; Adult; Child; Child, Preschool; Cross-Sectional Studies; Female; Humans; Infant; Male; Registries; Spinal Dysraphism; Treatment Outcome; Young Adult
PubMed: 30158199
DOI: 10.1542/peds.2017-3730