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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 Psychology Jul 2020This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional...
OBJECTIVE
This study examined: (a) the nature and prevalence of pain in youth with spina bifida (SB) (b) common coping responses to pain, and (c) longitudinal, bi-directional associations between internalizing symptoms and pain characteristics.
METHODS
Data were collected from youth (N = 140, 53.6% female, ages 8-15 at Time 1) and their parents and teachers at two time points spaced 2 years apart. Youth reported on several pain characteristics and coping responses. Multiple informants reported on child internalizing symptoms. Evaluation of Aims 1-3 was based on descriptive analyses, bivariate correlations, and linear and logistic regressions.
RESULTS
About 25% of the sample reported chronic pain (e.g., experiencing pain one or more times per week over the past 3 months) at Time 1 or 2, with roughly one-third of this chronic pain subsample reporting chronic pain both time points. Pain was usually rated as mild in intensity for the full sample and most commonly experienced in the head, abdomen, and back, and described as "aching." Youth with chronic pain reported significantly higher pain intensity and tended to use condition-specific methods to cope with pain (e.g., taking off braces). In 2 of 10 analyses, internalizing symptoms at Time 1 were associated with chronic pain and pain intensity at Time 2.
CONCLUSIONS
Roughly one-fourth of youth with SB are at risk for experiencing chronic pain, highlighting the need for increased assessment and treatment of pain in this population. Youth psychological functioning appears to more often precede, rather than being a consequence of pain symptoms.
Topics: Adaptation, Psychological; Adolescent; Child; Family; Female; Humans; Male; Pain; Spinal Dysraphism
PubMed: 32483627
DOI: 10.1093/jpepsy/jsaa037 -
American Journal of Medical Genetics.... Feb 2014Mandatory folic acid fortification in the United States corresponded with a decline in the prevalence of spina bifida (SB). The aim of this study was to describe the...
Mandatory folic acid fortification in the United States corresponded with a decline in the prevalence of spina bifida (SB). The aim of this study was to describe the epidemiologic characteristics of isolated versus non-isolated SB cases in both pre- and post-fortification periods. SB cases in the Slone Epidemiology Center Birth Defects Study from 1976 to 2011 without chromosomal anomalies and syndromes were included. A maternal interview, conducted within 6 months of delivery, collected information on demographics, reproductive history, diet, and supplement use. Daily folic acid intake in the periconceptional period was calculated using both dietary and supplement information and categorized as low intake (<400 µg/day) or high intake (≥400 µg/day). SB cases (n = 1170) were classified as isolated (80.4%) or non-isolated (19.1%). Non-isolated cases were further divided into subgroups based on accompanying major malformations (midline, renal, genital, heart, laterality). Compared to non-isolated cases, isolated cases were more likely to be white, non-Hispanic and have more than 12 years of education. Cases in the renal, genital, and heart subgroups had the lowest proportions of mothers with a high folic acid intake. The change from pre- to post-fortification was associated with a decrease in the proportion of isolated cases from 83% to 72%, though in both periods isolated cases were more likely to be female and their mothers were more likely to have high folic acid intake. These findings highlight the importance of separating isolated and non-isolated cases in etiologic research of SB.
Topics: Canada; Comorbidity; Food, Fortified; History, 20th Century; History, 21st Century; Humans; Prevalence; Risk Factors; Spinal Dysraphism; United States
PubMed: 24357196
DOI: 10.1002/ajmg.a.36324 -
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