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Urology Mar 2021To identify demographic and clinical characteristics associated with depression, anxiety, and social isolation among adults with spina bifida. We hypothesize that lower...
OBJECTIVE
To identify demographic and clinical characteristics associated with depression, anxiety, and social isolation among adults with spina bifida. We hypothesize that lower urinary tract dysfunction is associated with poor psychosocial outcomes.
METHODS
An anonymous survey was distributed via Facebook advertising to individuals with congenital urologic conditions. Adults with spina bifida were included in our analysis. Lower urinary tract dysfunction was assessed with the Neurogenic Bladder Symptom Score. Depression, anxiety, and social isolation T-scores were measured using Patient-Reported Outcome Measures Information System instruments. A composite depression-anxiety score was calculated. Separate adjusted linear models assessed the association between lower urinary tract dysfunction and depression, anxiety, composite depression-anxiety, and social isolation.
RESULTS
Around 195 participants were included. Rates of depression, anxiety, and social isolation were 48%, 47%, and 43%, respectively. Comorbid depression and anxiety occurred in 39% of subjects. On adjusted regression analysis, lower urinary tract dysfunction was associated with depression (P < 001), anxiety (P <.001), composite depression-anxiety (P <.001), and social isolation (P = .010).
CONCLUSION
Depression, anxiety, and social isolation are common in individuals with spina bifida relative to the general population, and associated with lower urinary tract dysfunction. Interventions focused on optimizing lower urinary tract symptoms and function, transition-age adults, group psychotherapy, and comorbid depression and anxiety may be of particular value in this population.
Topics: Adult; Anxiety; Cross-Sectional Studies; Depression; Female; Humans; Male; Middle Aged; Self Report; Social Isolation; Spinal Dysraphism
PubMed: 33221413
DOI: 10.1016/j.urology.2020.11.016 -
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 -
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 -
The Pan African Medical Journal 2022
Topics: Humans; Spinal Dysraphism; Meningomyelocele
PubMed: 36338552
DOI: 10.11604/pamj.2022.42.258.35894 -
Developmental Medicine and Child... Sep 2004
Topics: Child; Gait; Humans; Orthopedic Procedures; Spinal Dysraphism
PubMed: 15344516
DOI: 10.1017/s0012162204000982 -
TheScientificWorldJournal Nov 2007Survival to adulthood for people with Spina Bifida now exceeds 85% due to improvements in medical and surgical management. Rates remain lower than expected for community... (Review)
Review
Survival to adulthood for people with Spina Bifida now exceeds 85% due to improvements in medical and surgical management. Rates remain lower than expected for community participation, healthy lifestyle choices, employment and independent living. The importance of transition programming to help adolescents with disabilities prepare for adult life roles is now understood. Literature currently is mainly conceptual or descriptive, but informs the process of developing transition program models. The need for competent and effective adult care providers is discussed. Both the transition to adulthood and the transfer of care to adult care clinics are important and distinct components of spina bifida lifespan care.
Topics: Adult; Attitude to Health; Continuity of Patient Care; Disease Progression; Female; Humans; Male; Role; Spinal Dysraphism; United States
PubMed: 18060327
DOI: 10.1100/tsw.2007.179 -
Journal of Pediatric Rehabilitation... 2023This article provides an update to the 2018 Spina Bifida Association's Transition to Adult Care Guidelines. (Review)
Review
PURPOSE
This article provides an update to the 2018 Spina Bifida Association's Transition to Adult Care Guidelines.
METHODS
A workgroup of topic experts was convened including authors from the initial guideline workgroup. The workgroup reviewed and updated the primary, secondary, and tertiary outcome goals, clinical questions, and guideline recommendations based on a literature review.
RESULTS
Twenty-two additional articles were identified from the literature search. Updated references included observational studies describing transition to adult care outcomes, transition care model initiatives, and a validated self-management assessment tool.
CONCLUSION
Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.
Topics: Young Adult; Humans; Quality of Life; Transition to Adult Care; Spinal Dysraphism; Self-Management; Chronic Disease
PubMed: 38160373
DOI: 10.3233/PRM-230052 -
Journal of Pediatric Rehabilitation... 2021Post-operative complication rates may vary among racial and/or ethnic groups and have not been previously described in individuals with spina bifida (SB) undergoing...
PURPOSE
Post-operative complication rates may vary among racial and/or ethnic groups and have not been previously described in individuals with spina bifida (SB) undergoing urologic surgery. The aim of this study was to compare in-hospital complication frequencies of individuals with SB following urologic surgery by race/ethnicity.
METHODS
The Nationwide Inpatient Sample was used to identify pediatric patients with SB who underwent inpatient urologic procedures. A pediatric cohort (<18 years old) with SB that underwent urologic surgery were assessed. All analyses report weighted descriptive statistics, outcomes, and race/ethnicity was the primary predictor variable. The primary outcome of interest was post-operative complications which were defined using NSQIP ICD-9 code definitions. Secondary analysis included length of stay (LOS), and encounter cost was estimated using the cost-to-charge ratio files provided by the Healthcare Cost and Utilization Project.
RESULTS
The unadjusted model showed no differences in complications, LOS, and cost. In the adjusted model there were no differences in complications, LOS, and cost between Black and White encounters. However, Hispanic ethnicity was associated with a 20%(95%CI: 4-40%) increase in LOS and 18%(95%CI: 2-35%, p = 0.02) increase in cost compared to White encounters.
CONCLUSION
There was no evidence of variation for in-hospital complication rates among racial/ethnic groups undergoing urologic surgery. Hispanic ethnicity was associated with higher costs and longer LOS in pediatric SB encounters.
Topics: Adolescent; Child; Hispanic or Latino; Hospitals; Humans; Inpatients; Length of Stay; Postoperative Complications; Spinal Dysraphism
PubMed: 34864697
DOI: 10.3233/PRM-200699 -
Birth Defects Research Oct 2021Use of nonsteroidal anti-inflammatory drugs (NSAIDs) during pregnancy may increase risk for neural tube defects (NTDs), including spina bifida. Folic acid intake can...
BACKGROUND
Use of nonsteroidal anti-inflammatory drugs (NSAIDs) during pregnancy may increase risk for neural tube defects (NTDs), including spina bifida. Folic acid intake can prevent NTDs, but it is not known whether it modifies any risks associated with NSAID use.
OBJECTIVES
To assess the impact of periconceptional NSAID use on the risk of spina bifida overall and stratified by folic acid intake.
STUDY DESIGN
We analyzed 1998-2015 data from the Slone Epidemiology Center Birth Defects Study, a multi-site, case-control study. Mothers were interviewed to identify sociodemographic factors, behaviors, and exposures during pregnancy. Periconceptional NSAID use was defined as use of aspirin, ibuprofen, naproxen, or COX2 inhibitors within the month before or after the last menstrual period. Logistic regression models were used to estimate adjusted odds ratios (aORs) and 95% confidence intervals (CIs) for NSAID use, adjusted for study center and race/ethnicity stratified by average daily folic acid intake above ("high FA") or below ("low FA") 400 mcg/day.
RESULTS
We compared mothers of 267 infants with spina bifida to mothers of 6,233 nonmalformed controls. Among control mothers, 20% used NSAIDS periconceptionally (16% ibuprofen, 4% aspirin, 3% naproxen, and <1% COX-2 inhibitors). For any NSAID use, the aORs among low FA and high FA women were 1.70 (95% CI [1.13, 2.57]) and 1.09 (95% CI [0.69, 1.71]), respectively.
CONCLUSIONS
We observed a small increase in the risk for spina bifida among infants born to women who used NSAIDs periconceptionally, but this risk was limited to those who had inadequate folic acid intake.
Topics: Anti-Inflammatory Agents, Non-Steroidal; Case-Control Studies; Female; Folic Acid; Humans; Infant; Pharmaceutical Preparations; Pregnancy; Spinal Dysraphism
PubMed: 34346174
DOI: 10.1002/bdr2.1944 -
Journal of Pediatric Psychology Feb 2023Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across...
OBJECTIVE
Caregiver expressed emotion (EE), an interview-based measure of emotional valence within an interpersonal relationship, is associated with psychosocial outcomes across multiple conditions. Guided by a model implicating a bidirectional role of "Chronic Family Stress" in the unfolding of EE in family environments, the current study examined demographic, medical, and family-level variables in association with EE in caregivers of children with spina bifida (SB).
METHODS
Data were combined from 2 distinct studies of families with a child with SB, resulting in a sample of 174 (ages 8-17). Linear regressions examined the family stressors and child variables in association with maternal and paternal warmth and criticism, as coded from EE interviews.
RESULTS
Higher levels of family stress were associated with paternal criticism (p = .03), while having non-Hispanic White children was associated with both maternal and paternal criticism (ps < .005). Having children younger in age (ps < .01) and without a shunt (ps < .01) was associated with higher warmth.
CONCLUSIONS
Family stressors, absence of the negative impacts of systemic racism, shunt status, and age appear to be associated with the expression of EE in caregivers of a child with SB. Findings highlight multiple assessment considerations, including assessing EE when children are younger to engage caregivers with children with SB when they are more likely to be expressing more warmth. Pinpointing factors associated with caregiver EE in SB will help to better identify families at risk for high levels of criticism and also aid in the development of targeted prevention and intervention programs.
Topics: Child; Humans; Adolescent; Expressed Emotion; Caregivers; Family; Spinal Dysraphism; Demography
PubMed: 36164839
DOI: 10.1093/jpepsy/jsac073