-
Saudi Medical Journal Jan 2016
Topics: Anencephaly; Folic Acid; Food, Fortified; Humans; Mediterranean Region; Oman; Saudi Arabia; Spinal Dysraphism; Vitamin B Complex
PubMed: 26739968
DOI: 10.15537/smj.2016.1.13550 -
Urology Nov 2023To contextualize the challenges that persons with congenital genitourinary conditions (CGC) may encounter in adulthood, we examined health care access, readiness for...
OBJECTIVE
To contextualize the challenges that persons with congenital genitourinary conditions (CGC) may encounter in adulthood, we examined health care access, readiness for self-management, and health care utilization of adults with spina bifida (SB).
METHODS
Through surveys distributed via social media, persons with SB were asked about access and barriers to care, readiness for self-management, and health care utilization (ie, medical visits, missed visits, emergency room [ER] visits, hospital admissions) within the past year. Multivariable models were fitted to examine determinants of utilization.
RESULTS
Of the 270 eligible respondents (mean age 39), 24.5% had not received care from a urologist in the past year. The odds of missing any medical visits were increased among those with more prior urologic surgeries (odds ratio (OR) 1.35, 95%confidence interval (CI) 1.05-1.78) and those with ER visits for urologic condition within the past year (OR 2.65, 95%CI 1.22-6.01). Those with private insurance had lower odds of having ER visits for urologic condition (OR 0.46, 95%CI 0.22-0.84). The odds of hospital admission related to urologic condition were increased among female (OR 2.35, 95%CI 1.01-6.64), those with more prior urologic surgeries (OR 1.18, 95%CI 1.09-1.51), and those with a urologist (OR 2.98, 95%CI 1.15-14.47).
CONCLUSION
A substantial proportion of adults with CGC lack routine urologic care. Considering the significant barriers to care and lapses in care, efforts to improve access and optimize health care services utilization for this population with high medical complexity are warranted.
Topics: Adult; Female; Humans; Patient Acceptance of Health Care; Health Services Accessibility; Health Facilities; Spinal Dysraphism; Hospitalization
PubMed: 37690544
DOI: 10.1016/j.urology.2023.08.026 -
Child's Nervous System : ChNS :... Jul 2023Spina bifida is a serious birth defect affecting the central nervous system, characterized by incomplete closure of the neural tube. Ethiopia has a very high prevalence... (Review)
Review
Spina bifida is a serious birth defect affecting the central nervous system, characterized by incomplete closure of the neural tube. Ethiopia has a very high prevalence of spina bifida, affecting about 40 cases per 10,000 births. Babies born with spina bifida require early closure surgery, done within the first 2-3 days after birth. Some babies need repeat surgeries to address complications, including hydrocephalus. Without medical care, babies have a high risk of death within the first 5 years of their life. Neurosurgical capacity for spina bifida closure surgery at birth is a relatively new development in Ethiopia. ReachAnother Foundation, a not-for-profit organization based in OR, USA, started work in Ethiopia in 2009 and has been instrumental in training neurosurgeons and improving treatment for spina bifida and hydrocephalus. Along with the development of neurosurgical care, the Foundation has invested in training multi-disciplinary teams to conduct patient aftercare and has launched a platform for improved patient outcomes research. As of year 2022, they support six spina bifida "Centers of Excellence" nationwide and are continuously advocating for primary prevention of spina bifida through mandatory fortification of staple foods in Ethiopia. This paper describes ReachAnother's efforts in Ethiopia in a short interval of time, benefiting numerous patients and families with spina bifida and anencephaly. We document this as a case study for other countries to model where resources are limited and the prevalence of spina bifida and hydrocephalus is high, especially in Asia and Africa.
Topics: Infant, Newborn; Humans; Folic Acid; Ethiopia; Food, Fortified; Spinal Dysraphism; Hydrocephalus; Prevalence; Primary Prevention
PubMed: 36964773
DOI: 10.1007/s00381-023-05932-1 -
Topics in Spinal Cord Injury... 2022Spina bifida is a congenital neural tube defect that affects the spine and spinal cord, as well as the brain in many cases, with life-long health-related consequences....
Spina bifida is a congenital neural tube defect that affects the spine and spinal cord, as well as the brain in many cases, with life-long health-related consequences. In most cases, the term refers to open myelomeningocele but includes a spectrum of dysraphic conditions. Early recognition and comprehensive care improve long-term health, well-being, and quality of life and decrease the use of emergency services and hospitalizations over the lifespan. Current evidence-based care guidelines are comprehensive, but they are not easily interpreted in busy primary care settings. The development of a periodicity schedule serves to simplify the current spina bifida guidelines into a document that is easy to use by all practitioners and families.
Topics: Humans; Meningomyelocele; Quality of Life; Spinal Cord Injuries; Spinal Dysraphism
PubMed: 36017126
DOI: 10.46292/sci21-00097 -
Journal of Pediatric Rehabilitation... 2020It is estimated that a significant percentage of individuals with spina bifida (SB) are shorter than their age-matched typical peers. Parents of children with spina... (Review)
Review
It is estimated that a significant percentage of individuals with spina bifida (SB) are shorter than their age-matched typical peers. Parents of children with spina bifida may ask if human growth hormone is appropriate for their child. This article discusses short stature and the use of human growth hormone among children with SB. This guideline was developed for SB Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida.
Topics: Adolescent; Adult; Child; Child, Preschool; Dwarfism; Female; Human Growth Hormone; Humans; Infant; Infant, Newborn; Male; Practice Guidelines as Topic; Spinal Dysraphism; Young Adult
PubMed: 32986629
DOI: 10.3233/PRM-200710 -
Proceedings of the Royal Society of... Jun 1963
Topics: Humans; Hydrocephalus; Meningomyelocele; Postoperative Care; Spinal Dysraphism; Urinary Incontinence
PubMed: 13937597
DOI: No ID Found -
Research in Developmental Disabilities Jul 2020People with Spina Bifida usually experience difficulties with mathematics. In a series of other developmental disorders, a magnitude processing deficit was considered to...
People with Spina Bifida usually experience difficulties with mathematics. In a series of other developmental disorders, a magnitude processing deficit was considered to be the main source of subsequent difficulties in mathematics. The processing of magnitude could be numerical (which is the larger number) or non-numerical such as spatial (e.g., which is the longer?) or temporal (which one last longer?) for instance. However, no study yet has examined directly magnitude processes in a population with Spina Bifida. On the other hand, recent studies in people with genetic syndromes have suggested that visuospatial and working memory processes play an important role in magnitude processing, including number magnitude. Therefore, in this study we explored for the first time magnitude representation using several tasks with different visuospatial and working memory processing requirements, cognitive skills frequently impaired in Spina Bifida. Results showed children with SB presented a global magnitude processing deficit for non-numerical and numerical comparison tasks, but not in symbolic number magnitude tasks compared to controls. Importantly, visuospatial skills and working memory abilities could partially explain the differences between groups in comparison and estimation tasks. This study proposes that magnitude processing difficulties in children with SB could be due to higher cognitive factors such as visuospatial and working memory processes.
Topics: Child; Humans; Mathematics; Memory, Short-Term; Spinal Dysraphism
PubMed: 32413584
DOI: 10.1016/j.ridd.2020.103655 -
Journal of Pediatric Rehabilitation... 2020Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics... (Review)
Review
PURPOSE
Skin-related issues have a significant impact on health, activities of daily living, and quality of life among people with spina bifida. Data presented by select clinics that participate in the National Spina Bifida Patient Registry reported that 26% of individuals had a history of pressure injuries with 19% having had one in the past year. The spina bifida community lack direct guidelines on prevention of these and other skin related issues. The Integument (skin) Guidelines focus on prevention, not treatment, of existing problems.
METHODS
Using a consensus building methodology, the guidelines were written by experts in spina bifida and wound care.
RESULTS
The guidelines include age-grouped, evidence-based guidelines written in the context of an understanding of the whole person. They are presented in table format according to the age of the person with spina bifida.
CONCLUSION
These guidelines present a standardized approach to prevention of skin-related issues in spina bifida. Discovering what results in successful minimization of skin-related issues with testing of technology or prevention strategies is the next step in protecting this vulnerable population.
Topics: Adolescent; Adult; Child; Child, Preschool; Female; Humans; Infant; Infant, Newborn; Integumentary System; Male; Practice Guidelines as Topic; Registries; Skin Diseases; Spinal Dysraphism; Young Adult
PubMed: 33252092
DOI: 10.3233/PRM-200723 -
Child's Nervous System : ChNS :... Jan 2024The aim of the present study is to evaluate a population of young patients affected by Spina Bifida (SB) to describe their cardiorespiratory function and bone mineral...
PURPOSE
The aim of the present study is to evaluate a population of young patients affected by Spina Bifida (SB) to describe their cardiorespiratory function and bone mineral density profile, analyzing any differences between people performing and those who do not perform sports activity. The study also aimed to rule out possible congenital heart disease associated with spina bifida, considering the common origin of certain cardiac structures with those found to be altered in SB patients.
METHODS
Thirty-four young patients, aged between 12 and 22 years, diagnosed with spinal dysraphism (SD), have been clinically described and, in order to evaluate their physical fitness, functional capacity and bone mass, almost all of them underwent a complete cardiorespiratory assessment, including electrocardiogram (ECG), echocardiogram, Cardiopulmonary Exercise Test (CPET), body composition analysis using bioimpedance analysis (BIA) and Dual Energy X-ray Absorptiometry (DEXA), as well as the estimation of bone mineral density (BMD) with Computerized Bone Mineralometry (CBM).
RESULTS
Collected data demonstrated that only 35% of the subjects practiced physical activity during the week. BMI and percentage FM values were pathological in at least 50% of the population. On cardiological investigations (ECG and echocardiogram), no significant alterations were found. In all patients who performed CPET (79.4%), pathological values of the main functional capacity parameters were revealed, especially peak oxygen consumption (VO peak), even when corrected for BCM or FFM estimated at BIA and DEXA, respectively. In the CBM analysis, out of 27 patients in whom the femoral T-score was evaluated, a condition of osteopenia was revealed in 40.7% of the patients (11/27) and osteoporosis in 18.5% (5/27); out of 27 patients in whom the lumbar T-score was evaluated, 37% of the patients showed osteopenia (10/27) and 29.6% osteoporosis (8/27). When the comparison between exercising and non-exercising patients was performed, the only statistically significant difference that emerged was the median lumbar T-score value, which appeared lower in the group not performing physical activity (p = 0,009).
CONCLUSIONS
The extensive cardiorespiratory evaluation, including CPET, of our cohort of spina bifida patients showed altered values of the main parameters related to cardiorespiratory fitness and is the only study in the literature that analysed bone mineralization values in physically active and sedentary spina bifida patients and demonstrated a statistically significant difference. Furthermore, it is the only study to date that investigated the possible association of congenital heart diseases with SD, without demonstrating the existence of pathological conditions.
Topics: Humans; Child; Adolescent; Young Adult; Adult; Spinal Dysraphism; Physical Fitness; Bone Density; Osteoporosis; Neural Tube Defects; Leisure Activities
PubMed: 37688616
DOI: 10.1007/s00381-023-06152-3 -
Child: Care, Health and Development Nov 2015The aim of this paper was to examine sexual knowledge, concerns and needs of youth with spina bifida (SB) to inform the medical community on ways to better support their...
OBJECTIVE
The aim of this paper was to examine sexual knowledge, concerns and needs of youth with spina bifida (SB) to inform the medical community on ways to better support their sexual health.
METHODS
As part of the Video Intervention/Prevention Assessment (VIA) - transitions, a prospective cohort study, 309 h of video data were collected from 14 participants (13-28 years old) with SB. Participants were loaned a video camcorder for 8-12 weeks to shoot visual narratives about any aspects of their lives. V/A visual narratives were analysed with grounded theory using NVivo.
RESULTS
Out of 14 participants, 11 (six women) addressed issues surrounding romantic relationships and sexuality in their video clips. Analysis revealed shared concerns, questions and challenges regarding sexuality gathered under four main themes: romantic relationships, sexuality, fertility and parenthood, and need for more talk on sexuality.
CONCLUSIONS
Youth with SB reported difficulties in finding answers to questions regarding their sexuality, romantic relationships and fertility. This study revealed a need for help from the medical community to inform and empower youth with SB in the area of sexual health. Through sexual and reproductive health education with patients and parents starting at an early age, medical providers can further encourage healthy emotional and physical development in adolescents transitioning into adulthood.
Topics: Adolescent; Adult; Female; Humans; Male; Prospective Studies; Sexuality; Spinal Dysraphism; Video Recording
PubMed: 26331351
DOI: 10.1111/cch.12282