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1.
J Pediatr Rehabil Med ; 16(4): 581-582, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38160377

RESUMO

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.


Assuntos
Emigrantes e Imigrantes , Defeitos do Tubo Neural , Disrafismo Espinal , Gravidez , Feminino , Humanos , Criança , Estados Unidos , Cuidado Pré-Natal , Longevidade , Disrafismo Espinal/complicações , Disrafismo Espinal/prevenção & controle
3.
J Pediatr Rehabil Med ; 16(s1): S1-S2, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37270821

RESUMO

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.


Assuntos
Neurocirurgia , Disrafismo Espinal , Adulto , Gravidez , Feminino , Humanos , Disrafismo Espinal/epidemiologia
4.
Urology ; 173: 17-25, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36473589

RESUMO

Although folic acid fortification and advances in prenatal repair have reduced Spina Bifida (SB) prevalence and the severity of comorbidities, individuals with SB remain at elevated risk for neurocognitive impairments that studies have shown can negatively impact, among other things, urological self-care. Identifying and addressing these impairments with practical interventions can meaningfully improve long-term outcomes for individuals with SB. We review neurocognitive impairments associated with SB and provide practical solutions to support improvement of long-term urological outcomes.


Assuntos
Autogestão , Disrafismo Espinal , Urologia , Gravidez , Feminino , Humanos , Ácido Fólico , Disrafismo Espinal/complicações , Disrafismo Espinal/terapia , Vitaminas
5.
J Pediatr Rehabil Med ; 15(4): 549-557, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36565076

RESUMO

PURPOSE: This study aimed to conduct a national survey of individuals with spina bifida (SB) and their care partners to assess COVID-19 vaccination behaviors and vaccine uptake. METHODS: A survey instrument was designed to assess current vaccination status, general perceptions towards vaccinations, and barriers to vaccination within the SB community. Surveys were administered to individuals with SB or their representing care partner. Chi-squared and independent-samples t-tests were used to analyze the relationship between vaccine uptake and demographics. Multivariable logistic regression modeling was used to test which predictors impacted the odds that a participant received a COVID vaccine. RESULTS: A total of 1,412 participants completed the questionnaire, and 1,145 participants reported their COVID-19 vaccine status. The most common reason for not getting vaccinated was a concern about vaccine safety and efficacy. Overall, healthcare professional recommendations played a significant (OR 2.77 p < 0.001) role in whether to get vaccinated. CONCLUSION: About one in five individuals with SB have not received any COVID-19 vaccine. Actionable and modifiable factors were identified which may help increase vaccine uptake. Importantly, health providers play a critical role in COVID-19 vaccination messaging and should emphasize vaccine safety and efficacy.


Assuntos
COVID-19 , Disrafismo Espinal , Humanos , Vacinas contra COVID-19/uso terapêutico , COVID-19/epidemiologia , COVID-19/prevenção & controle , Vacinação , Pessoal de Saúde , Disrafismo Espinal/complicações
6.
J Pediatr Rehabil Med ; 15(4): 545-547, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36565077

RESUMO

Whereas legislation mandates for folic acid fortification have been implemented throughout many nations, divergent neural tube defects (NTDs) prevalence rates still remain among the world's populations. In North America, the prevalence estimate is 39 infants per 100,000 live births. Open spina bifida (SB), also known as myelomeningocele, remains the most complex congenital abnormality of the central nervous system compatible with long term survival; this recognized complexity gives rise to emerging comorbidities and interventions. For example, increasing autism spectrum disorder rates have been reported among individuals with SB utilizing a 31,220 subject population-based birth cohort. Along with new clinical observations, telecommunication platforms such as Zoom® have evolved as clinical and investigational tools. Historically, society meetings, research conferences, and journals have provided opportunities for professional development and dissemination of up-to-date materials. The Journal of Pediatric Rehabilitation Medicine (JPRM) has arisen as an open-access global platform for the dissemination of SB-related inquiry. The journal has also highlighted the research presented at the Spina Bifida Association's previous Spina Bifida World Congresses. At the last congress, which was held in 2017, twenty-three countries were represented; this number is expected to grow by the next convocation in 2023. This congress will provide an opportunity for health care professionals from around the globe to present a broad array of research topics and build collaborations. Concurrently, the JPRM will continue as an open-access platform for SB advocacy, care, education, and investigation, across our fast changing world for the international SB community well into the future.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Defeitos do Tubo Neural , Disrafismo Espinal , Lactente , Criança , Humanos , Disrafismo Espinal/terapia , Disrafismo Espinal/epidemiologia , Defeitos do Tubo Neural/epidemiologia , Ácido Fólico , Prevalência
7.
Pediatrics ; 150(6)2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36416007

RESUMO

OBJECTIVES: Describe the distribution of weight status categories and determine factors associated with overweight and obesity (OW/OB) in children and adolescents with spina bifida (SB) using the National Spina Bifida Patient Registry. METHODS: Demographic, anthropometric, and clinical data collected from 2009 through 2018 was used to describe the prevalence of OW/OB. The generalized estimating equation model (GEE) identified factors associated with OW/OB among individuals with SB. RESULTS: Participants (n = 7215) were aged 2 to 19 years (mean = 11.1; standard error, 0.06) and 51.4% female. The majority were non-Hispanic white (57.2%) followed by Hispanic or Latino (25.1%) and non-Hispanic Black (7.5%). The myelomeningocele (MMC) subgroup accounted for 76.3%. Most (60.2%) were community ambulators. The overall percentage of OW/OB was 45.2%, with 49.2% of MMC and 32.0% of nonmyelomeningocele OW/OB. Following the Centers for Disease Control Obesity Severity Classification System, 19.7% of MMC were in class 1, 6.6% in class 2, and 3.5% in class 3. Univariate analysis of MMC participants demonstrated demographic (age, sex, race/ethnicity, and clinic region) and clinical variables (functional level of lesion, ambulation, and number of shunt surgeries) were associated with OW/OB. The GEE model showed that OW/OB was independently, and significantly, associated with age, sex, race/ethnicity, lesion levels, and geographic location of the clinics. CONCLUSIONS: The demographic and clinical factors associated with OW/OB in children and adolescents with SB further our understanding of factors contributing to the higher prevalence of OW/OB in this population and may inform OW/OB prevention and treatment strategies.


Assuntos
Meningomielocele , Disrafismo Espinal , Adolescente , Criança , Feminino , Humanos , Masculino , Disrafismo Espinal/epidemiologia , Sobrepeso/epidemiologia , Meningomielocele/epidemiologia , Obesidade , Sistema de Registros
8.
J Pediatr Urol ; 18(6): 800.e1-800.e7, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35843788

RESUMO

INTRODUCTION: Spina bifida (SB) is the most common permanently disabling congenital defect. In 2016, the Spina Bifida Association (SBA) began updating the Guidelines for the Care of People with Spina Bifida (Guidelines). These Guidelines identified over 250 research gaps for the care of individuals with SB. The community of people living with SB prioritized these research gaps to create a formal research agenda that the SBA could support. OBJECTIVE: To present the process and the final research agenda created by individuals with SB, their care partners, clinicians, and researchers. DESIGN: A quantitative survey was developed to allow adults with SB and caregivers of those with SB to rank the impact of each of the 27 topical areas of the Guidelines. The survey was sent via SBA's database to English and Spanish-literate individuals. 1607 responses were captured and analyzed. Two focus groups were convened after survey analysis: adults with SB and caregivers of children with SB. Discussion outlines for the focus groups were developed based on the results from the survey and were used for known-group validation of the highest-ranked topics. The SBA then solicited caregivers of those with SB, adults with SB, and clinical communities to join its initial Research Advisory Council (RAC). Each group generated a list of top research questions to address the gaps in these highest-ranked impact areas. The SBA led discussion groups for each topic area to rank the proposed questions in order of importance to the SB community. They provided content validity and revisions to the language to improve interpretation by the SB community. The final SB Research Agenda was created from the final four to six ranked questions in each of the six topics. RESULTS: A ranking of findings from the quantitative survey identified the two most common topics impacting adults with SB and caregivers of both children and adults with SB were bowel incontinence and urinary incontinence. CONCLUSION: A Research Agenda for SB was rigorously created to prioritize topic areas of highest impact as ranked by individuals in the SB community to fill the research gaps identified in the Guidelines. Bowel and urinary incontinence, both often treated by urologists, were ranked at the top. This agenda will be used to prioritize research efforts to improve the health of those with SB.


Assuntos
Incontinência Fecal , Disrafismo Espinal , Incontinência Urinária , Criança , Adulto , Humanos , Disrafismo Espinal/terapia , Inquéritos e Questionários , Cuidadores
9.
J Pediatr Rehabil Med ; 14(4): 569-570, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34864704

RESUMO

Worldwide neural tube defects, such as encephalocele and spina bifida (SB), remain a substantial cause of the global burden of disease; and in the US, Latinos consistently have a higher birth prevalence of SB compared with other ethnic groups. From limited access and fragmented care, to scarcely available adult services, many are the challenges that besiege those living with SB. Thus, to provide inclusion and active involvement of parents of children and adults with SB from all communities, innovative approaches will be required, such as community-based participatory research and culturally competent learning collaboratives. Promisingly, the Spina Bifida Community-Centered Research Agenda was developed by the community of people living with SB through the Spina Bifida Association (SBA). Additionally, the SBA will host the Fourth World Congress on Spina Bifida Research and Care in March of 2023. Just as the SBA is clearly committed to this population, the Journal of Pediatric Rehabilitation Medicine will continue to serve as a catalyst for SB care, education, and research across the SB population in a global context.


Assuntos
Defeitos do Tubo Neural , Disrafismo Espinal , Adulto , Criança , Hispânico ou Latino , Humanos , Prevalência , Disrafismo Espinal/reabilitação
10.
J Pediatr Rehabil Med ; 14(4): 571-582, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34776433

RESUMO

PURPOSE: To investigate the: (1) percent of children with spina bifida (SB) complaining of pain, (2) frequency, duration, and cause of pain by sex, level of lesion type of SB, and ambulation status, (3) body sites reported to hurt, by variables in objective 2, and (4) associations between physical and mental/emotional health between caregiver and child. METHODS: Cross-sectional study of 101 caregivers of children (3 to 6 years old) with SB. Survey data and information from medical records were included. Pearson chi-square, one-way ANOVA, Fisher's exact test, logistic regressions, and bivariate correlations were used. RESULTS: Seventy percent reported that their child complained of pain, which did not significantly differ by sex, level of lesion, type of SB, or ambulation status. Most (86%) were reported to have experienced pain for less than 24 hours. The most frequently reported pain site was the head, followed by the abdomen and the lower body. Number of pain sites was moderately correlated with frequency of pain complaints. Correlations between how caregivers reported their own physical/mental/emotional health and how they rated that of their children ranged from weak (r = 0.22) to moderate (r = 0.55). CONCLUSION: Almost seven of ten children reportedly complained of pain ranging from at least once a month to everyday. Pain needs to be routinely assessed and treated in this population.


Assuntos
Disrafismo Espinal , Cuidadores , Criança , Pré-Escolar , Estudos Transversais , Humanos , Dor/epidemiologia , Dor/etiologia , Disrafismo Espinal/complicações , Disrafismo Espinal/psicologia , Inquéritos e Questionários
11.
Disabil Health J ; 13(4): 100920, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32402791

RESUMO

BACKGROUND: Individuals with spina bifida are at increased risk for urinary tract infection (UTI), however there are few population-based investigations of the burden of UTI hospitalizations. OBJECTIVE: We assessed rates and risk factors for UTI hospitalization in individuals with and without spina bifida. METHODS: We conducted a retrospective cohort study to estimate rates of UTI hospitalization by spina bifida status. We included individuals enrolled in Tennessee Medicaid who lived in one of the Emerging Infections Program's Active Bacterial Surveillance counties between 2005 and 2013. Spina bifida was primarily defined and UTI hospitalizations were identified using International Classification of Diseases, Ninth Revision diagnoses. We also studied a subset without specific health conditions potentially associated with UTI. We used Poisson regression to calculate rate ratios (RR) of UTIs for individuals with versus without spina bifida, adjusting for race, sex and age group. RESULTS: Over the 9-years, 1,239,362 individuals were included and 2,493 met criteria for spina bifida. Individuals with spina bifida had over a four-fold increased rate of UTI hospitalization than those without spina bifida-in the overall study population and in the subset without specific, high-risk conditions (adjusted rate ratios: 4.41, 95% confidence intervals: 3.03, 6.43) and (4.87, 95% CI: 2.99, 7.92), respectively. We detected differences in rates of UTI hospitalization by race and sex in individuals without spina bifida that were not seen among individuals with spina bifida. CONCLUSIONS: Individuals with spina bifida had increased rates of UTI hospitalizations, and associated demographic patterns differed from those without spina bifida.


Assuntos
Pessoas com Deficiência/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Medicaid/estatística & dados numéricos , Disrafismo Espinal/complicações , Infecções Urinárias/diagnóstico , Infecções Urinárias/etiologia , Infecções Urinárias/terapia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Disrafismo Espinal/epidemiologia , Tennessee/epidemiologia , Estados Unidos , Infecções Urinárias/epidemiologia , Adulto Jovem
12.
Disabil Health J ; 13(2): 100883, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31928964

RESUMO

The multidisciplinary model (MCM) is described as one that utilizes skills and experience from practitioners belonging to various disciplines, each treating patients from a specific clinical perspective.1 The Spina Bifida Association (SBA) supports and recommends that clinical care for people with Spina Bifida (SB) be provided in specialty clinics of which the MCM is an example; that care be coordinated; and that there be a plan for transitional care.2 This paper explores the challenges the MCM faces with a transitioning and aging population in a care system that calls for a positive patient experience, engaged health care professionals, desired outcomes, with consideration of cost.


Assuntos
Atenção à Saúde/estatística & dados numéricos , Pessoas com Deficiência/psicologia , Pessoas com Deficiência/estatística & dados numéricos , Pessoal de Saúde/psicologia , Equipe de Assistência ao Paciente/normas , Disrafismo Espinal/psicologia , Disrafismo Espinal/terapia , Adolescente , Adulto , Atitude do Pessoal de Saúde , Criança , Pré-Escolar , Feminino , Pessoal de Saúde/estatística & dados numéricos , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Filosofia Médica , Guias de Prática Clínica como Assunto , Estados Unidos , Adulto Jovem
13.
Disabil Health J ; 13(2): 100833, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31399347

RESUMO

BACKGROUND: Spina Bifida (SB) is one of the most common birth defects and causes of permanent disability in the United States (US), with approximately 3.5 cases per 10,000 live births. OBJECTIVE: To identify complications associated with SB related to skin breakdown, pain, and urinary tract infections (UTIs), and to examine socio-demographic differences related to these complications. METHODS: Exploratory cross-sectional study via online of a national US convenience sample of adults with SB. RESULTS: We collected 1485 survey responses, of which 852 had complete, useable data. Skin breakdown in one or more locations during the past year was reported by 43.1%. After controlling for socio-demographic characteristics, only mobility variables remained significant predictors of skin breakdown (assistive device use OR = 3.119, 95% CI: 1.749, 5.564; using a wheelchair OR = 6.336, 95% CI: 3.442, 11.662). Pain in past seven days was reported by 46.9%. Single respondents (OR = 0.621; 95% CI: 0.419, 0.921) and those with at least a Bachelor's degree (vs high school degree or less, OR = 0.468; 95% CI: 0.283, 0.774) were less likely, and those using assistive devices were significantly more likely (OR = 1.960; 95% CI: 1.163, 3.303), to report pain. About one-third (32.7%) reported having a UTI within the past 12 months. Notably, almost half (49.6%) of respondents did not answer this question. The presence of UTIs was not significantly related to any socio-demographic characteristics assessed. CONCLUSIONS: Adults with SB in the US live with a wide range of complications which are potentially under-monitored, with predictors of complications that require further research.


Assuntos
Pessoas com Deficiência , Dor/etiologia , Tecnologia Assistiva/efeitos adversos , Dermatopatias/etiologia , Disrafismo Espinal/complicações , Infecções Urinárias/etiologia , Cadeiras de Rodas/efeitos adversos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Razão de Chances , Inquéritos e Questionários , Estados Unidos , Adulto Jovem
14.
J Pediatr Rehabil Med ; 12(4): 383-392, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31744034

RESUMO

PURPOSE: We conducted a needs assessment among parents/guardians of children and independent adults with spina bifida, served by the Spina Bifida Association of Georgia (SBAGA). The objective was to assess if SBAGA is adequately meeting the needs of its constituents and to identify challenges and opportunities to improve services. METHODS: The survey targeted all members of SBAGA in 2017. Survey questions were drafted separately for parents/guardians of children, and independent adults with spina bifida. Both closed- and open-ended response options were provided. The survey was pilot-tested, and administered in English and Spanish, using email, post, or in person. RESULTS: A total of 119 individuals completed the survey. For parents/guardians (n= 96), the most important needs were bladder and bowel education, social and communication skills education, medical support, and transition and independence training. Independent adults (n= 23) responded that they mostly needed bladder and bowel education, medical support, and transition and independence training. Location of the SBAGA events and transportation to the events were the most frequent limiting factors for both groups. CONCLUSIONS: Our survey findings highlighted that SBAGA services are valued overall. The survey findings will be used to guide quality improvement of current programs, and develop programs addressing emerging needs and challenges.


Assuntos
Avaliação das Necessidades , Disrafismo Espinal , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Georgia , Pesquisas sobre Atenção à Saúde , Humanos , Lactente , Masculino , Disrafismo Espinal/terapia , Adulto Jovem
15.
J Urol ; 201(6): 1193-1198, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30730412

RESUMO

PURPOSE: The lifetime risk of renal damage in children with spina bifida is high but only limited baseline imaging data are available for this population. We evaluated a large prospective cohort of infants with spina bifida to define their baseline imaging characteristics. MATERIALS AND METHODS: The UMPIRE Protocol for Young Children with Spina Bifida is an iterative quality improvement protocol that follows a cohort of newborns at 9 United States centers. Using descriptive statistics, we report the initial baseline imaging characteristics, specifically regarding renal bladder ultrasound, cystogram and dimercaptosuccinic acid nuclear medicine scan. RESULTS: Data on 193 infants from 2015 to 2018 were analyzed. Renal-bladder ultrasound was normal in 55.9% of infants, while 40.4% had Society for Fetal Urology grade 1 to 2 hydronephrosis in at least 1 kidney, 3.7% had grade 3 to 4 hydronephrosis in either kidney and 21.8% had grade 1 or higher bilateral hydronephrosis. There was no vesicoureteral reflux in 84.6% of infants. A third of enrolled infants underwent dimercaptosuccinic acid nuclear medicine renal scan, of whom 92.4% had no renal defects and 93.9% had a difference in differential function of less than 15%. CONCLUSIONS: The majority of infants born with spina bifida have normal baseline imaging characteristics and normal urinary tract anatomy at birth. This proactive protocol offers careful scheduled surveillance of the urinary tract with the goal of lifelong maintenance of normal renal function and healthy genitourinary development.


Assuntos
Sistema Urinário/diagnóstico por imagem , Doenças Urológicas/diagnóstico por imagem , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Estudos Prospectivos , Disrafismo Espinal/complicações , Doenças Urológicas/etiologia
16.
Arch Phys Med Rehabil ; 100(8): 1475-1481, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30684491

RESUMO

OBJECTIVE: To estimate differences in the length of stay and costs for comparable hospitalizations of patients with spina bifida (SB) with and without pressure injuries. DESIGN: Retrospective, cross-sectional, observational study. SETTING: Nationwide Inpatient Sample from years 2010-2014. PARTICIPANTS: Hospitalizations of patients with SB (N=7776). Hospitalizations among patients with SB and pressure injuries (n=3888) were matched to hospitalizations among patients with SB but without pressure injuries (n=3888). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Differences in length of stay and total costs between the 2 groups. RESULTS: After successful matching, multivariate modeling of costs and length of stay on matched sample showed that hospitalizations with pressure injuries had an increased 1.2 inpatient days and excess average costs of $1182 in 2014 dollars. CONCLUSIONS: The estimated average cost of hospitalization increased by 10%, and the estimated average length of stay increased by 24% in the presence of pressure injuries among hospitalized patients with SB, compared with their peers without these injuries. These results highlight the substantial morbidity associated with pressure injuries, which are potentially preventable before or during hospitalizations among persons with SB.


Assuntos
Custos Hospitalares/estatística & dados numéricos , Hospitalização/economia , Tempo de Internação/estatística & dados numéricos , Úlcera por Pressão/economia , Úlcera por Pressão/terapia , Disrafismo Espinal/economia , Disrafismo Espinal/terapia , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos
17.
Pediatrics ; 142(3)2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30158199

RESUMO

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; n = 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% (n = 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.


Assuntos
Disrafismo Espinal/diagnóstico por imagem , Disrafismo Espinal/cirurgia , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Masculino , Sistema de Registros , Disrafismo Espinal/epidemiologia , Resultado do Tratamento , Adulto Jovem
18.
J Urol ; 200(1): 187-194, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29588216

RESUMO

PURPOSE: Most children with spina bifida now survive into adulthood, although most have neuropathic bladder with potential complications of incontinence, infection, renal damage and diminished quality of life. In this study we sought to 1) describe contemporary bladder management and continence outcomes of adults with spina bifida, 2) describe differences from younger individuals and 3) assess for association with socioeconomic factors. MATERIALS AND METHODS: We analyzed data on bladder management and outcomes in adults with spina bifida from the National Spina Bifida Patient Registry. A strict definition of continence was used. Results were compared to young children (age 5 to 11 years) and adolescents (12 to 19). Statistical analysis compared cohorts by gender, ethnicity, spina bifida type, lesion level, insurance status, educational attainment, employment status and continence. RESULTS: A total of 5,250 patients with spina bifida were included, of whom 1,372 (26.1%) were adults. Of the adult patients 45.8% did not take medication, but 76.8% performed clean intermittent catheterization. Continence was decreased in adults with myelomeningocele (45.8%) vs those with nonmyelomeningocele spina bifida (63.1%, p <0.0001). Continence rates were higher in the older cohorts with myelomeningocele (p <0.0001) but not in those with nonmyelomeningocele spina bifida (p = 0.1192). Bladder management and history of urological surgery varied among age groups. On univariate analysis with spina bifida related or socioeconomic variables continence was significantly associated with educational level but on multivariable logistic regression analysis bladder continence was significantly associated with employment status only. CONCLUSIONS: Bladder management techniques differ between adults and children with spina bifida. Bladder continence outcomes were better in adults, with nearly half reporting continence. Continence was significantly associated with employment status in patients age 25 years or older.


Assuntos
Disrafismo Espinal/complicações , Bexiga Urinaria Neurogênica/terapia , Incontinência Urinária/terapia , Adolescente , Adulto , Fatores Etários , Criança , Pré-Escolar , Humanos , Cateterismo Uretral Intermitente , Sistema de Registros , Autocuidado , Fatores Socioeconômicos , Estados Unidos , Bexiga Urinaria Neurogênica/etiologia , Incontinência Urinária/etiologia , Adulto Jovem
19.
J Urol ; 199(1): 268-273, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28830753

RESUMO

PURPOSE: We performed an exploratory analysis of data from the NSBPR (National Spina Bifida Patient Registry) to assess variation in the frequency of bladder reconstruction surgeries among NSBPR centers. MATERIALS AND METHODS: We queried the 2009-2014 NSBPR to identify patients who had ever undergone bladder reconstruction surgeries. We evaluated demographic characteristics, spina bifida type, functional level, mobility and NSBPR center to determine whether any of these factors were associated with reconstructive surgery rates. Multivariable logistic regression was used to simultaneously adjust for the impact of these factors. RESULTS: We identified 5,528 patients with spina bifida enrolled in the NSBPR. Of these patients 1,129 (20.4%) underwent bladder reconstruction (703 augmentation, 382 continent catheterizable channel, 189 bladder outlet procedure). Surgical patients were more likely older, female, nonHispanic white, with a higher lesion level, myelomeningocele diagnosis, nonambulators (all p <0.001) and nonprivately insured (p=0.018). Bladder reconstruction surgery rates varied among NSBPR centers (range 12.1% to 37.9%, p <0.001). After correcting for known confounders NSBPR center, spina bifida type, mobility, gender and age (all p <0.001) were significant predictors of surgical intervention. Race (p=0.19) and insurance status (p=0.11) were not associated with surgical intervention. CONCLUSIONS: There is significant variation in rates of bladder reconstruction surgery among NSBPR centers. In addition to clinical factors such as mobility status, lesion type and lesion level, nonclinical factors such as patient age, gender and treating center are also associated with the likelihood of an individual undergoing bladder reconstruction.


Assuntos
Hospitais Especializados/estatística & dados numéricos , Meningomielocele/epidemiologia , Procedimentos de Cirurgia Plástica/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , Disrafismo Espinal/cirurgia , Procedimentos Cirúrgicos Urológicos/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Cobertura do Seguro/estatística & dados numéricos , Masculino , Meningomielocele/complicações , Pessoa de Meia-Idade , Seleção de Pacientes , Procedimentos de Cirurgia Plástica/métodos , Fatores Sexuais , Disrafismo Espinal/complicações , Bexiga Urinária/cirurgia , Procedimentos Cirúrgicos Urológicos/métodos , Adulto Jovem
20.
J Urol ; 199(3): 837-843, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29132982

RESUMO

PURPOSE: Achieving bladder continence in individuals with spina bifida is a lifetime management goal. We investigated bladder continence status through time and factors associated with this status in patients with spina bifida. MATERIALS AND METHODS: We used National Spina Bifida Patient Registry data collected from 2009 through 2015 and applied generalized estimating equation models to analyze factors associated with bladder continence status. RESULTS: This analysis included 5,250 participants with spina bifida in a large, multi-institutional patient registry who accounted for 12,740 annual clinic visit records during the study period. At last followup mean age was 16.6 years, 22.4% of participants had undergone bladder continence surgery, 92.6% used some form of bladder management and 45.8% reported bladder continence. In a multivariable regression model the likelihood of bladder continence was significantly greater in those who were older, were female, were nonHispanic white, had a nonmyelomeningocele diagnosis, had a lower level of lesion, had a higher mobility level and had private insurance. Continence surgery history and current management were also associated with continence independent of all other factors (adjusted OR and 95% CI 1.9, 1.7-2.1 and 3.8, 3.2-4.6, respectively). The association between bladder management and continence was stronger for those with a myelomeningocele diagnosis (adjusted OR 4.6) than with nonmyelomeningocele (adjusted OR 2.8). CONCLUSIONS: In addition to demographic, social and clinical factors, surgical intervention and bladder management are significantly and independently associated with bladder continence status in individuals with spina bifida. The association between bladder management and continence is stronger in those with myelomeningocele.


Assuntos
Sistema de Registros , Disrafismo Espinal/complicações , Bexiga Urinaria Neurogênica/etiologia , Micção/fisiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Prognóstico , Estudos Retrospectivos , Disrafismo Espinal/epidemiologia , Fatores de Tempo , Estados Unidos/epidemiologia , Bexiga Urinaria Neurogênica/epidemiologia , Bexiga Urinaria Neurogênica/fisiopatologia , Adulto Jovem
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