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Sexual Medicine Reviews Apr 2021As most adults with spina bifida are either sexually active or interested in becoming sexually active, providers should understand how spina bifida impacts sexual... (Review)
Review
INTRODUCTION
As most adults with spina bifida are either sexually active or interested in becoming sexually active, providers should understand how spina bifida impacts sexual function and options for treatment.
OBJECTIVES
The objective of this study is to summarize the current literature describing how features of spina bifida impact sexual function in men and women, effective available treatment options for sexual dysfunction, and to identify research gaps.
METHODS
Searches were conducted in PubMed, CINAHL Complete, PsychInfo, Cochrane Central, Scopus, and Web of Science Core Collection databases using keywords related to spina bifida and sexual function. 34 primary research studies were included.
RESULTS
Most men (56-96%) can achieve an erection, although it may be insufficient for penetration. Although 50-88% ejaculate, it is often dripping, retrograde, or insensate. Twenty percent to 67% achieve orgasm. Generally, men with lower lesions and intact sacral reflexes have better outcomes, although some men with all levels of lesion report good function. Sildenafil is efficacious at treating erectile dysfunction for most men. The "TO-MAXimize sensation, sexuality, and quality of life" procedure may improve sexual function in selected men with low-level lesions. Female sexual function and treatment is less well understood. Women may experience decreased arousal, difficulties with orgasm, and pain. No treatment has been studied in women. Bowel and bladder incontinence during intercourse appears to be bothersome to men and women. Although both men and women have diminished sexual satisfaction, their sexual desire appears to be least impacted. Present studies are limited by studies' small, heterogeneous populations, the misuse of validated questionnaires in the sexually inactive population, and the lack of a validated questionnaire specific to people with spina bifida.
CONCLUSIONS
Spina bifida impacts the sexual function of both men and women. Future studies should seek a better understanding of female sexual function and treatment, use validated questionnaires appropriately, and ultimately create a validated sexual function questionnaire specific to this population. Streur CS, Corona L, Smith JE, et al. Sexual Function of Men and Women With Spina Bifida: A Scoping Literature Review. Sex Med Rev 2021;9:244-266.
Topics: Adult; Female; Humans; Male; Quality of Life; Sexual Behavior; Sexual Dysfunction, Physiological; Sexuality; Spinal Dysraphism
PubMed: 33608247
DOI: 10.1016/j.sxmr.2020.09.001 -
Child's Nervous System : ChNS :... Jul 2023Globally, spina bifida (SB) occurs more often in low- and middle-income countries, where the healthcare demands are often quite challenging. Several social/societal... (Review)
Review
INTRODUCTION
Globally, spina bifida (SB) occurs more often in low- and middle-income countries, where the healthcare demands are often quite challenging. Several social/societal issues and/or lack of government support makes for incomplete SB management in many areas. Clearly, neurosurgeons should be knowledgeable about initial closure techniques and the basics of SB management, but must also advocate for the patients outside our immediate scope of care.
METHODS
Recently, the Comprehensive Policy Recommendations for the Management of Spina Bifida and Hydrocephalus in Low- and Middle-Income Countries (CHYSPR) and the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) publications emphasized the need for a more unified approach to SB care. Although both documents discuss other neurological conditions, they support SB as a congenital malformation needing attention.
RESULTS
We identified several similarities for comprehensive SB care in these approaches - including education, governance, advocacy, and the need for continuum of care. Prevention was recognized as the most important aspect for SB going forward. A significant return of investment was noted, and both documents recommend more active neurosurgical involvement (i.e., folic acid fortification).
CONCLUSION
A new call for holistic and comprehensive care for SB management is recognized. Neurosurgeons are called upon to use solid science to educate governments and actively participate to advocate for better care and most importantly, prevention. Folic acid fortification schemes are mandatory and neurosurgeons should advocate for global strategies.
Topics: Humans; Developing Countries; Spinal Dysraphism; Folic Acid; Policy; Hydrocephalus
PubMed: 37199787
DOI: 10.1007/s00381-023-05988-z -
PloS One 2021A systematic review was conducted in high-income country settings to analyse: (i) spina bifida neonatal and IMRs over time, and (ii) clinical and socio-demographic... (Meta-Analysis)
Meta-Analysis
OBJECTIVES
A systematic review was conducted in high-income country settings to analyse: (i) spina bifida neonatal and IMRs over time, and (ii) clinical and socio-demographic factors associated with mortality in the first year after birth in infants affected by spina bifida.
DATA SOURCES
PubMed, Embase, Ovid, Web of Science, CINAHL, Scopus and the Cochrane Library were searched from 1st January, 1990 to 31st August, 2020 to review evidence.
STUDY SELECTION
Population-based studies that provided data for spina bifida infant mortality and case fatality according to clinical and socio-demographical characteristics were included. Studies were excluded if they were conducted solely in tertiary centres. Spina bifida occulta or syndromal spina bifida were excluded where possible.
DATA EXTRACTION AND SYNTHESIS
Independent reviewers extracted data and assessed their quality using MOOSE guideline. Pooled mortality estimates were calculated using random-effects (+/- fixed effects) models meta-analyses. Heterogeneity between studies was assessed using the Cochrane Q test and I2 statistics. Meta-regression was performed to examine the impact of year of birth cohort on spina bifida infant mortality.
RESULTS
Twenty studies met the full inclusion criteria with a total study population of over 30 million liveborn infants and approximately 12,000 spina bifida-affected infants. Significant declines in spina bifida associated infant and neonatal mortality rates (e.g. 4.76% decrease in IMR per 100, 000 live births per year) and case fatality (e.g. 2.70% decrease in infant case fatality per year) were consistently observed over time. Preterm birth (RR 4.45; 2.30-8.60) and low birthweight (RR 4.77; 2.67-8.55) are the strongest risk factors associated with increased spina bifida infant case fatality.
SIGNIFICANCE
Significant declines in spina bifida associated infant/neonatal mortality and case fatality were consistently observed, advances in treatment and mandatory folic acid food fortification both likely play an important role. Particular attention is warranted from clinicians caring for preterm and low birthweight babies affected by spina bifida.
Topics: Female; Humans; Infant; Infant Mortality; Infant, Newborn; Pregnancy; Premature Birth; Spinal Dysraphism
PubMed: 33979363
DOI: 10.1371/journal.pone.0250098 -
Journal of Health Psychology Apr 2022The purpose of the current study was to examine benefit-finding in a sample of young adults with SB and assess relationships between demographic and medical variables...
The purpose of the current study was to examine benefit-finding in a sample of young adults with SB and assess relationships between demographic and medical variables and benefit-finding. Young adults with SB ( = 329), ranging in age from 18 to 30 ( = 23.44 ± 2.93), completed the Benefit-Finding Scale (BFS), a 17-item self-report questionnaire, and reported on demographic and medical information related to their SB diagnosis. Participants endorsed a range of benefits associated with living with SB. The most frequently endorsed benefits were related to personal strengths, interpersonal relationships, and life philosophy. Younger age, majority race, higher education level, and employment were significantly associated with higher BFS scores. Young adults with SB report benefits associated with their chronic condition. Future research should examine these benefits in relation to psychosocial outcomes.
Topics: Employment; Humans; Interpersonal Relations; Self Report; Spinal Dysraphism; Surveys and Questionnaires; Young Adult
PubMed: 33541148
DOI: 10.1177/1359105321990804 -
Journal of Pediatric Rehabilitation... 2020An estimated 85% of individuals with spina bifida (SB) survive into adulthood, warranting SB-specific transition to adult healthcare guidelines to address the diverse... (Review)
Review
An estimated 85% of individuals with spina bifida (SB) survive into adulthood, warranting SB-specific transition to adult healthcare guidelines to address the diverse and complex medical, adaptive, and social needs particular to this condition. Latex allergy constitutes one important health concern for this population that requires ongoing and life-long evidence-based management. This article discusses management of latex allergy according to the SB Latex Allergy Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida, reviews current care models in which such latex allergy guidelines can be implemented, and explores further relevant research topics in SB care relative to latex allergy.
Topics: Adolescent; Adult; Child; Child, Preschool; Female; Humans; Infant; Infant, Newborn; Latex Hypersensitivity; Male; Practice Guidelines as Topic; Spinal Dysraphism; Young Adult
PubMed: 33285646
DOI: 10.3233/PRM-200741 -
Journal of Pediatric Rehabilitation... 2020While the neuropsychological profile for individuals with Spina Bifida (SB) can vary, often certain patterns of strengths and weaknesses are evident across the lifespan.... (Review)
Review
While the neuropsychological profile for individuals with Spina Bifida (SB) can vary, often certain patterns of strengths and weaknesses are evident across the lifespan. Understanding variability related to neural structure, genetics, ethnicity, and the environment is key to understanding individual differences in outcomes and can be vital in planning interventions and tracking progress. This article outlines the SB Guideline for the Neuropsychological Care of People with Spina Bifida from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB neurocognitive profiles is warranted.
Topics: Adolescent; Adult; Child; Child, Preschool; Female; Humans; Infant; Infant, Newborn; Male; Nervous System Diseases; Practice Guidelines as Topic; Spinal Dysraphism; Young Adult
PubMed: 33285647
DOI: 10.3233/PRM-200761 -
Topics in Spinal Cord Injury... 2017The care for adults with spina bifida is an important area to study. As increasing numbers of patients with spina bifida survive into adulthood, they expect to thrive... (Review)
Review
The care for adults with spina bifida is an important area to study. As increasing numbers of patients with spina bifida survive into adulthood, they expect to thrive and receive the best possible care into adulthood to maintain their health. Understanding the health needs in this emerging and changing population will help clinicians provide the best anticipatory care for adults with spina bifida and continue to improve outcomes. This will also impact pediatric care by improving the ability to determine preventive methods from early on and understand the impacts of pediatric care and decisions over the lifespan.
Topics: Adolescent; Adult; Female; Health Services Needs and Demand; Humans; Male; Spinal Dysraphism; Transition to Adult Care; Young Adult
PubMed: 29339892
DOI: 10.1310/sci2302-155 -
Topics in Spinal Cord Injury... 2022Individuals living with cerebral palsy (CP) or spina bifida (SB) are at heightened risk for chronic health conditions that may develop or be influenced by the impairment...
BACKGROUND
Individuals living with cerebral palsy (CP) or spina bifida (SB) are at heightened risk for chronic health conditions that may develop or be influenced by the impairment and/or the process of aging.
OBJECTIVES
The objective of this study was to compare the incidence of and adjusted hazards for musculoskeletal (MSK) morbidities among adults living with and without CP or SB.
METHODS
A retrospective, longitudinal cohort study was conducted among adults living with ( = 15,302) CP or SB and without ( = 1,935,480) CP or SB. Incidence estimates of common MSK morbidities were compared at 4 years of enrollment. Survival models were used to quantify unadjusted and adjusted hazard ratios for incident MSK morbidities. The analyses were performed in 2019 to 2020.
RESULTS
Adults living with CP or SB had a higher 4-year incidence of MSK morbidity (55.3% vs. 39.0%) as compared to adults without CP or SB, and differences were to a clinically meaningful extent. Fully adjusted survival models demonstrated that adults with CP or SB had a greater hazard for all MSK disorders; this ranged from hazard ratio (HR) 1.40 (95% CI, 1.33 to 1.48) for myalgia to HR 3.23 (95% CI, 3.09 to 3.38) for sarcopenia and weakness.
CONCLUSION
Adults with CP or SB have a significantly higher incidence of and risk for common MSK morbidities as compared to adults without CP or SB. Efforts are needed to facilitate the development of improved clinical screening algorithms and early interventions to reduce risk of MSK disease onset/progression in these higher risk populations.
Topics: Adult; Cerebral Palsy; Humans; Longitudinal Studies; Morbidity; Retrospective Studies; Spinal Cord Injuries; Spinal Dysraphism
PubMed: 36017121
DOI: 10.46292/sci21-00078 -
The Pan African Medical Journal 2022
Topics: Humans; Spinal Dysraphism; Meningomyelocele
PubMed: 36338552
DOI: 10.11604/pamj.2022.42.258.35894 -
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