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[PMID]:27775158
[Au] Autor:Faleiros F; Pelosi G; Warschausky S; Tate D; Käppler C; Thomas E
[Ti] Título:Factors Influencing the Use of Intermittent Bladder Catheterization by Individuals With Spina Bifida in Brazil and Germany.
[So] Source:Rehabil Nurs;43(1):46-51, 2018 Jan/Feb.
[Is] ISSN:2048-7940
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:PURPOSE: Intermittent catheterization (IC) often is essential for individuals with spina bifida/myelomeningocele (SBM) and neurogenic bladder. This study aimed to identify and analyze the factors that influence the use of IC. DESIGN AND METHODS: Descriptive study with convenience sampling. Data were collected using printed (Brazil) and online (Germany) questionnaires, and analyzed using multivariate logistical regression and analysis of variance. The study included 100 Brazilian and 100 German patients, aged 0-55 years, with SBM who utilized IC. FINDINGS: Intermittent catheterization was used by 188 of the 200 patients. Three variables were important for predicting who did or did not use IC: no discontinuation of IC, absence of technical difficulty, and daily frequency of IC. CONCLUSIONS AND CLINICAL RELEVANCE: Findings suggest that difficulties with IC use experienced by spina bifida patients and their family members that predicted full discontinuation tended to be personal variables, rather than demographic or medical characteristics.
[Mh] Termos MeSH primário: Cateterismo Uretral Intermitente/utilização
Disrafismo Espinal/terapia
[Mh] Termos MeSH secundário: Adolescente
Adulto
Brasil
Criança
Pré-Escolar
Feminino
Alemanha
Seres Humanos
Lactente
Cateterismo Uretral Intermitente/psicologia
Modelos Logísticos
Masculino
Meia-Idade
Enfermagem em Reabilitação/métodos
Disrafismo Espinal/enfermagem
Disrafismo Espinal/psicologia
Inquéritos e Questionários
Bexiga Urinaria Neurogênica/enfermagem
Bexiga Urinaria Neurogênica/terapia
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1802
[Cu] Atualização por classe:180226
[Lr] Data última revisão:
180226
[Sb] Subgrupo de revista:N
[Da] Data de entrada para processamento:161025
[St] Status:MEDLINE
[do] DOI:10.1002/rnj.302


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[PMID]:29339866
[Au] Autor:Wasserman RM; Stoner AM; Stern A; Holmbeck GN
[Ad] Endereço:Department of Pediatrics, Section of Psychology, Baylor College of Medicine, Houston, Texas.
[Ti] Título:ADHD and Attention Problems in Children With and Without Spina Bifida.
[So] Source:Top Spinal Cord Inj Rehabil;22(4):253-259, 2016.
[Is] ISSN:1945-5763
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:To identify differences in the diagnosis and treatment of attention deficit/hyperactivity disorder (ADHD) between typically developing children and children with spina bifida. Sixty-eight children with spina bifida and 68 demographically matched, typically developing children participated in a larger, longitudinal study. Rates of maternal, paternal, and teacher reports of attention problems, as well as rates of maternal reports of ADHD diagnosis, diagnosing provider, pharmaceutical treatment, mental health treatment, and academic accommodations were obtained at 5 time points over a period of 8 years and were compared across groups. Children with spina bifida were more likely to have an ADHD diagnosis and attention problems. Attention problems and ADHD diagnoses were first reported at earlier time points for children with spina bifida than typically developing children. Among children with ADHD or attention problems, children with spina bifida were more likely to be treated with medication, but they were just as likely to use mental health services and receive resource services at school. Children with spina bifida were diagnosed with ADHD and identified as having attention problems more frequently and at an earlier age. This finding could be due to earlier symptom development, greater parental awareness, or more contact with providers. Among those with ADHD or attention problems, stimulant medication was more likely to be prescribed to children with spina bifida, despite research that suggests it may not be as beneficial for them. Further research on the effectiveness of ADHD pharmacological treatment for children with spina bifida is recommended.
[Mh] Termos MeSH primário: Transtorno do Deficit de Atenção com Hiperatividade/complicações
Disrafismo Espinal/complicações
[Mh] Termos MeSH secundário: Atenção
Estudos de Casos e Controles
Estimulantes do Sistema Nervoso Central
Criança
Feminino
Seres Humanos
Estudos Longitudinais
Masculino
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Nm] Nome de substância:
0 (Central Nervous System Stimulants)
[Em] Mês de entrada:1802
[Cu] Atualização por classe:180220
[Lr] Data última revisão:
180220
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:180118
[St] Status:MEDLINE
[do] DOI:10.1310/sci2204-253


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[PMID]:29215383
[Au] Autor:Patel N; Viguera AC; Baldessarini RJ
[Ti] Título:Mood-Stabilizing Anticonvulsants, Spina Bifida, and Folate Supplementation: Commentary.
[So] Source:J Clin Psychopharmacol;38(1):7-10, 2018 Feb.
[Is] ISSN:1533-712X
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:PURPOSE/BACKGROUND: High risks of neural tube defects and other teratogenic effects are associated with exposure in early pregnancy to some anticonvulsants, including in women with bipolar disorder. METHODS/PROCEDURES: Based on a semistructured review of recent literature, we summarized findings pertaining to this topic. FINDINGS/RESULTS: Valproate and carbamazepine are commonly used empirically (off-label) for putative long-term mood-stabilizing effects. Both anticonvulsants have high risks of teratogenic effects during pregnancy. Risks of neural tube defects (especially spina bifida) and other major malformations are especially great with valproate and can arise even before pregnancy is diagnosed. Standard supplementation of folic acid during pregnancy can reduce risk of spontaneous spina bifida, but not that associated with valproate or carbamazepine. In contrast, lamotrigine has regulatory approval for long-term use in bipolar disorder and appears not to have teratogenic effects in humans. IMPLICATIONS/CONCLUSIONS: Lack of protective effects against anticonvulsant-associated neural tube defects by folic acid supplements in anticipation of and during pregnancy is not widely recognized. This limitation and high risks of neural tube and other major teratogenic effects, especially of valproate, indicate the need for great caution in the use of valproate and carbamazepine to treat bipolar disorder in women of child-bearing age.
[Mh] Termos MeSH primário: Antimaníacos/efeitos adversos
Ácido Fólico/administração & dosagem
Defeitos do Tubo Neural/prevenção & controle
Disrafismo Espinal/prevenção & controle
[Mh] Termos MeSH secundário: Anticonvulsivantes/administração & dosagem
Anticonvulsivantes/efeitos adversos
Antimaníacos/administração & dosagem
Transtorno Bipolar/tratamento farmacológico
Carbamazepina/administração & dosagem
Carbamazepina/efeitos adversos
Suplementos Nutricionais
Feminino
Seres Humanos
Defeitos do Tubo Neural/induzido quimicamente
Gravidez
Complicações na Gravidez/tratamento farmacológico
Disrafismo Espinal/induzido quimicamente
Triazinas/administração & dosagem
Triazinas/efeitos adversos
Ácido Valproico/administração & dosagem
Ácido Valproico/efeitos adversos
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Nm] Nome de substância:
0 (Anticonvulsants); 0 (Antimanic Agents); 0 (Triazines); 33CM23913M (Carbamazepine); 614OI1Z5WI (Valproic Acid); 935E97BOY8 (Folic Acid); U3H27498KS (lamotrigine)
[Em] Mês de entrada:1802
[Cu] Atualização por classe:180201
[Lr] Data última revisão:
180201
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:171208
[St] Status:MEDLINE
[do] DOI:10.1097/JCP.0000000000000813


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[PMID]:29029556
[Au] Autor:Bloemen MAT; de Groot JF; Backx FJG; Benner J; Kruitwagen CLJJ; Takken T
[Ad] Endereço:Research Group Lifestyle and Health, HU University of Applied Sciences Utrecht, Bolognalaan 101, PO Box 85182 3508 AD, Utrecht, the Netherlands.
[Ti] Título:Wheelchair Shuttle Test for Assessing Aerobic Fitness in Youth With Spina Bifida: Validity and Reliability.
[So] Source:Phys Ther;97(10):1020-1029, 2017 10 01.
[Is] ISSN:1538-6724
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:Background: Testing aerobic fitness in youth is important because of expected relationships with health. Objective: The purpose of the study was to estimate the validity and reliability of the Shuttle Ride Test in youth who have spina bifida and use a wheelchair for mobility and sport. Design: Ths study is a validity and reliability study. Methods: The Shuttle Ride Test, Graded Wheelchair Propulsion Test, and skill-related fitness tests were administered to 33 participants for the validity study (age = 14.5 ± 3.1 y) and to 28 participants for the reliability study (age = 14.7 ± 3.3 y). Results: No significant differences were found between the Graded Wheelchair Propulsion Test and the Shuttle Ride Test for most cardiorespiratory responses. Correlations between the Graded Wheelchair Propulsion Test and the Shuttle Ride Test were moderate to high (r = .55-.97). The variance in peak oxygen uptake (VO2peak) could be predicted for 77% of the participants by height, number of shuttles completed, and weight, with large prediction intervals. High correlations were found between number of shuttles completed and skill-related fitness tests (CI = .73 to -.92). Intraclass correlation coefficients were high (.77-.98), with a smallest detectable change of 1.5 for number of shuttles completed and with coefficients of variation of 6.2% and 6.4% for absolute VO2peak and relative VO2peak, respectively. Conclusions: When measuring VO2peak directly by using a mobile gas analysis system, the Shuttle Ride Test is highly valid for testing VO2peak in youth who have spina bifida and use a wheelchair for mobility and sport. The outcome measure of number of shuttles represents aerobic fitness and is also highly correlated with both anaerobic performance and agility. It is not possible to predict VO2peak accurately by using the number of shuttles completed. Moreover, the Shuttle Ride Test is highly reliable in youth with spina bifida, with a good smallest detectable change for the number of shuttles completed.
[Mh] Termos MeSH primário: Teste de Esforço/métodos
Consumo de Oxigênio/fisiologia
Aptidão Física/fisiologia
Disrafismo Espinal/fisiopatologia
Cadeiras de Rodas
[Mh] Termos MeSH secundário: Adolescente
Limiar Anaeróbio/fisiologia
Criança
Teste de Esforço/estatística & dados numéricos
Feminino
Seres Humanos
Masculino
Países Baixos
Reprodutibilidade dos Testes
Respiração
Taxa Respiratória/fisiologia
Esportes
Transportes
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171017
[Lr] Data última revisão:
171017
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:171015
[St] Status:MEDLINE
[do] DOI:10.1093/ptj/pzx075


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[PMID]:28991086
[Au] Autor:Brochard C; Peyronnet B; Dariel A; Ménard H; Manunta A; Ropert A; Neunlist M; Bouguen G; Siproudhis L
[Ad] Endereço:1 Service des Maladies de l'Appareil Digestif, Centre Hospitalier Universitaire Pontchaillou, Université de Rennes 1, Rennes, France 2 Service d'Explorations Fonctionnelles Digestives, Centre Hospitalier Universitaire Pontchaillou, Université de Rennes 1, Rennes, France 3 Institut National de la Santé et de la Recherche Médicale U1235, Université de Nantes, Nantes, France 4 Centre d'Investigation Clinique 1414, Inflammation and Physiology, Université de Rennes 1, Rennes, France 5 Service d'Urologie, Centre Hospitalier Universitaire Pontchaillou, Rennes, France 6 Centre Référence National Maladies Rares Spina Bifida, Centre Hospitalier Universitaire Pontchaillou, Rennes, France 7 Institut National de la Santé et de la Recherche Médicale U991, Université de Rennes, Rennes, France.
[Ti] Título:Bowel Dysfunction Related to Spina Bifida: Keep It Simple.
[So] Source:Dis Colon Rectum;60(11):1209-1214, 2017 Nov.
[Is] ISSN:1530-0358
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Although care of urological disorders in spina bifida is well established, there is yet no agreement on a standardized approach to bowel dysfunction in this population. OBJECTIVE: The purpose of this study was to assess bowel dysfunction using validated instruments and the risk factors in adults with spina bifida. DESIGN: A multidisciplinary team prospectively collected patient data, focusing on anorectal and urological symptoms. SETTINGS: The study was conducted with data from a French referral center for spina bifida. PATIENTS: A total of 228 adults with spina bifida (sex ratio men:women, 92 (40%):136 (60%)) with a median age of 34.7 years (range, 26.8-44.7 y) were assessed. MAIN OUTCOMES MEASURES: Factors associated with severe fecal incontinence (Cleveland Clinic Incontinence Score ≥9) and severe bowel dysfunction (Neurogenic Bowel Dysfunction score ≥14) were assessed in a multivariate analysis model. RESULTS: The prevalence rates of severe fecal incontinence and severe bowel dysfunction were 60% (130/217) and 42% (71/168). Bowel dysfunction was the second most common major concern of patients after lower urinary tract dysfunction. Male sex, obesity, urinary incontinence, and a Knowles-Eccersley-Scott symptom constipation score ≥10 were independently associated with severe fecal incontinence. Patients with soft stools had significantly less severe bowel dysfunction. Neither neurologic level nor other neurologic features of spina bifida were associated with severe fecal incontinence or severe bowel dysfunction. LIMITATIONS: The recruitment of patients with spina bifida through a national referral center might have resulted in selection bias, and some data were missing especially regarding BMI and Neurogenic Bowel Dysfunction score (21% and 26% of missing data). CONCLUSIONS: The prevalence rates of severe fecal incontinence and severe bowel dysfunction in adults with spina bifida were high and were adequately perceived by the patients. The present study emphasized the association of bowel dysfunction and fecal incontinence with obesity, urologic disorders, and stool consistency rather than neurologic features. See Video Abstract at http://links.lww.com/DCR/A394.
[Mh] Termos MeSH primário: Enteropatias/etiologia
Disrafismo Espinal/complicações
[Mh] Termos MeSH secundário: Adulto
Constipação Intestinal/diagnóstico
Constipação Intestinal/epidemiologia
Constipação Intestinal/etiologia
Incontinência Fecal/diagnóstico
Incontinência Fecal/epidemiologia
Incontinência Fecal/etiologia
Feminino
França
Seres Humanos
Enteropatias/diagnóstico
Enteropatias/epidemiologia
Masculino
Prevalência
Estudos Prospectivos
Fatores de Risco
Índice de Gravidade de Doença
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171013
[Lr] Data última revisão:
171013
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:171010
[St] Status:MEDLINE
[do] DOI:10.1097/DCR.0000000000000892


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[PMID]:28934221
[Au] Autor:Qian C; Wong CWY; Wu Z; He Q; Xia H; Tam PKH; Wong KKY; Lui VCH
[Ad] Endereço:Department of Surgery, LKS Faculty of Medicine, The University of Hong Kong, Hong Kong SAR, China.
[Ti] Título:Stage specific requirement of platelet-derived growth factor receptor-α in embryonic development.
[So] Source:PLoS One;12(9):e0184473, 2017.
[Is] ISSN:1932-6203
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Platelet-derived growth factor receptor alpha (PDGFRα) is a cell-surface receptor tyrosine kinase for platelet-derived growth factors. Correct timing and level of Pdgfra expression is crucial for embryo development, and deletion of Pdgfra caused developmental defects of multiple endoderm and mesoderm derived structures, resulting in a complex phenotypes including orofacial cleft, spina bifida, rib deformities, and omphalocele in mice. However, it is not clear if deletion of Pdgfra at different embryonic stages differentially affects these structures. PURPOSE: To address the temporal requirement of Pdgfra in embryonic development. METHODS: We have deleted the Pdgfra in Pdgfra-expressing tissues at different embryonic stages in mice, examined and quantified the developmental anomalies. RESULTS: Current study showed that (i) conditional deletion of Pdgfra at different embryonic days (between E7.5 and E10.5) resulted in orofacial cleft, spina bifida, rib cage deformities, and omphalocele, and (ii) the day of Pdgfra deletion influenced the combinations, incidence and severities of these anomalies. Deletion of Pdgfra caused apoptosis of Pdgfra-expressing tissues, and developmental defects of their derivatives. CONCLUSION: Orofacial cleft, spina bifida and omphalocele are among the commonest skeletal and abdominal wall defects of newborns, but their genetic etiologies are largely unknown. The remarkable resemblance of our conditional Pdgfra knockout embryos to theses human congenital anomalies, suggesting that dysregulated PDGFRA expression could cause these anomalies in human. Future work should aim at defining (a) the regulatory elements for the expression of the human PDGFRA during embryonic development, and (b) if mutations / sequence variations of these regulatory elements cause these anomalies.
[Mh] Termos MeSH primário: Desenvolvimento Embrionário/fisiologia
Receptor alfa de Fator de Crescimento Derivado de Plaquetas/metabolismo
[Mh] Termos MeSH secundário: Parede Abdominal/anormalidades
Parede Abdominal/embriologia
Anormalidades Múltiplas/embriologia
Anormalidades Múltiplas/genética
Anormalidades Múltiplas/metabolismo
Animais
Apoptose/fisiologia
Fenda Labial/embriologia
Fenda Labial/genética
Fenda Labial/metabolismo
Fissura Palatina/embriologia
Fissura Palatina/genética
Fissura Palatina/metabolismo
Regulação da Expressão Gênica no Desenvolvimento
Técnicas de Inativação de Genes
Hérnia Umbilical/embriologia
Hérnia Umbilical/genética
Hérnia Umbilical/metabolismo
Imuno-Histoquímica
Marcação In Situ das Extremidades Cortadas
Camundongos Endogâmicos C57BL
Camundongos Transgênicos
Receptor alfa de Fator de Crescimento Derivado de Plaquetas/genética
Esqueleto/anormalidades
Esqueleto/embriologia
Esqueleto/metabolismo
Disrafismo Espinal/embriologia
Disrafismo Espinal/genética
Disrafismo Espinal/metabolismo
Tamoxifeno
Fatores de Tempo
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Nm] Nome de substância:
094ZI81Y45 (Tamoxifen); EC 2.7.10.1 (Receptor, Platelet-Derived Growth Factor alpha)
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171018
[Lr] Data última revisão:
171018
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170922
[St] Status:MEDLINE
[do] DOI:10.1371/journal.pone.0184473


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[PMID]:28885344
[Au] Autor:Sato T; Yonezawa I; Onda S; Yoshikawa K; Takano H; Shimamura Y; Okuda T; Kaneko K
[Ad] Endereço:Department of Orthopedic Surgery, Juntendo University School of Medicine, Tokyo, Japan.
[Ti] Título:Surgical treatment for lumbar hyperlordosis after resection of a spinal lipoma associated with spina bifida: A case report.
[So] Source:Medicine (Baltimore);96(36):e7895, 2017 Sep.
[Is] ISSN:1536-5964
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:RATIONALE: A hyperlordosis deformity of the lumbar spine is relatively rare, and surgical treatment has not been comprehensively addressed. In this case report, we describe the clinical presentation, surgical treatment, and medium-term follow-up of a patient presenting with a progressive lumbar hyperlordosis deformity after resection of a spinal lipoma associated with spina bifida. PATIENT CONCERNS: The patient was a 20-year-old woman presenting with a progressive hyperlordosis deformity of the lumbar spine associated with significant back pain (visual analog pain score of 89/100 mm), but with no neurological symptoms. DIAGNOSES: The lumbar lordosis (LL), measured on standing lateral view radiographs, was 114°, with a sagittal vertical axis (SVA) of -100 mm. The patient had undergone excision of a lipoma, associated with spina bifida of the lumbar spine, at 7 months of age.She was first evaluated at our hospital at 18 years of age for progressive spinal deformity and lumbago. INTERVENTIONS: An in situ fusion, from T5 to S1, using pedicle screws with bone graft obtained from the iliac crest, was performed. OUTCOMES: Postoperatively, the LL decreased to 93°, and the SVA decreased to -50 mm. The decision to not correct the hyperlordosis deformity fully was intentional. Seven years and 1 month postsurgery, the patient had no limitations in standing and walking and reported a pain score of 8/100 mm; there was no evidence of a loss of correction. LESSONS: Lumbar hyperlordosis after resection of a spinal lipoma associated with spina bifida is rare. Posterior fixation provided an effective treatment in this case. As the lumbar hyperlordosis deformity is often high, correction can be difficult. In this case, although the correction and fusion were performed in situ, there was no progression of either the deformity or the lumbago. Early detection remains an essential component of effective treatment, allowing correction when the spinal deformity is easily reversible.
[Mh] Termos MeSH primário: Lipoma/cirurgia
Lordose/etiologia
Lordose/cirurgia
Vértebras Lombares/cirurgia
Neoplasias da Medula Espinal/cirurgia
Disrafismo Espinal/cirurgia
[Mh] Termos MeSH secundário: Feminino
Seres Humanos
Lipoma/complicações
Lordose/diagnóstico por imagem
Vértebras Lombares/diagnóstico por imagem
Complicações Pós-Operatórias/diagnóstico por imagem
Complicações Pós-Operatórias/cirurgia
Neoplasias da Medula Espinal/complicações
Disrafismo Espinal/complicações
Adulto Jovem
[Pt] Tipo de publicação:CASE REPORTS; JOURNAL ARTICLE
[Em] Mês de entrada:1709
[Cu] Atualização por classe:170918
[Lr] Data última revisão:
170918
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170909
[St] Status:MEDLINE
[do] DOI:10.1097/MD.0000000000007895


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[PMID]:28619502
[Au] Autor:Brar R; Prasad A; Goudihalli S; Pathak A
[Ad] Endereço:Departments of Radiology and Neurosurgery, Fortis Hospital Mohali, Punjab, India. Electronic address: brar.rahat@gmail.com.
[Ti] Título:"Outside Support": Curious Case of Duplicated Posterior Elements.
[So] Source:World Neurosurg;105:1030.e1-1030.e2, 2017 Sep.
[Is] ISSN:1878-8769
[Cp] País de publicação:United States
[La] Idioma:eng
[Mh] Termos MeSH primário: Disrafismo Espinal/diagnóstico por imagem
Disrafismo Espinal/cirurgia
[Mh] Termos MeSH secundário: Seres Humanos
Lactente
Masculino
Coluna Vertebral/diagnóstico por imagem
Tomógrafos Computadorizados
Tomografia Computadorizada por Raios X
[Pt] Tipo de publicação:CASE REPORTS; JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171004
[Lr] Data última revisão:
171004
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170617
[St] Status:MEDLINE


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[PMID]:28548634
[Au] Autor:Davis MC; Hopson BD; Blount JP; Carroll R; Wilson TS; Powell DK; Jackson McLain AB; Rocque BG
[Ad] Endereço:Departments of 1 Neurosurgery.
[Ti] Título:Predictors of permanent disability among adults with spinal dysraphism.
[So] Source:J Neurosurg Spine;27(2):169-177, 2017 Aug.
[Is] ISSN:1547-5646
[Cp] País de publicação:United States
[La] Idioma:eng
[Ab] Resumo:OBJECTIVE Predictors of permanent disability among individuals with spinal dysraphism are not well established. In this study, the authors examined potential risk factors for self-reported permanent disability among adults with spinal dysraphism. METHODS A total of 188 consecutive individuals undergoing follow-up in an adult spinal dysraphism clinic completed a standardized National Spina Bifida Patient Registry survey. Chi-square tests and logistic regression were used to assess bivariate relationships, while multivariate logistic regression was used to identify factors independently associated with self-identification as "permanently disabled." RESULTS A total of 106 (56.4%) adults with spina bifida identified themselves as permanently disabled. On multivariate analysis, relative to completion of primary and/or secondary school, completion of technical school (OR 0.01, 95% CI 0-0.40; p = 0.021), some college (OR 0.22, 95% CI 0.08-0.53; p < 0.001), college degree (OR 0.06, 95% CI 0.003-0.66; p = 0.019), and holding an advanced degree (OR 0.12, 95% CI 0.03-0.45; p = 0.002) were negatively associated with permanent disability. Relative to open myelomeningocele, diagnosis of closed spinal dysraphism was also negatively associated with permanent disability (OR 0.20, 95% CI 0.04-0.90; p = 0.036). Additionally, relative to no stool incontinence, stool incontinence occurring at least daily (OR 6.41, 95% CI 1.56-32.90; p = 0.009) or more than weekly (OR 3.43, 95% CI 1.10-11.89; p = 0.033) were both positively associated with permanent disability. There was a suggestion of a dose-response relationship with respect to the influence of educational achievement and frequency of stool incontinence on the likelihood of permanent disability. CONCLUSIONS The authors' findings suggest that level of education and degree of stool incontinence are the strongest predictors of permanent disability among adults with spinal dysraphism. These findings will be the basis of efforts to improve community engagement and to improve readiness for transition to adult care in a multidisciplinary pediatric spina bifida clinic.
[Mh] Termos MeSH primário: Disrafismo Espinal/diagnóstico
[Mh] Termos MeSH secundário: Adulto
Idoso
Avaliação da Deficiência
Escolaridade
Incontinência Fecal/diagnóstico
Incontinência Fecal/etiologia
Feminino
Seguimentos
Seres Humanos
Modelos Logísticos
Masculino
Meia-Idade
Análise Multivariada
Prognóstico
Curva ROC
Estudos Retrospectivos
Autorrelato
Disrafismo Espinal/complicações
Incontinência Urinária/diagnóstico
Incontinência Urinária/etiologia
Adulto Jovem
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1708
[Cu] Atualização por classe:171123
[Lr] Data última revisão:
171123
[Sb] Subgrupo de revista:IM
[Da] Data de entrada para processamento:170527
[St] Status:MEDLINE
[do] DOI:10.3171/2017.1.SPINE161044


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[PMID]:28490461
[Au] Autor:Sims-Williams HJ; Sims-Williams HP; Mbabazi Kabachelor E; Warf BC
[Ad] Endereço:Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
[Ti] Título:Quality of life among children with spina bifida in Uganda.
[So] Source:Arch Dis Child;102(11):1057-1061, 2017 Nov.
[Is] ISSN:1468-2044
[Cp] País de publicação:England
[La] Idioma:eng
[Ab] Resumo:BACKGROUND: Children surviving after spina bifida repair often have significant disability, the consequences of which may be more profound in low-income countries. The aim of this cross-sectional study was to measure quality of life (QOL) reported by children with spina bifida in Uganda, and to define factors associated with QOL. METHODS: QOL was measured using both the Health Utilities Index (HUI3) Tool and a visual analogue scale (VAS) marked from 0 to 10. In keeping with the WHO definition of QOL, further analysis was conducted using subjective QOL scores (using the VAS). Multivariate regression was used to investigate the association between VAS scores and prespecified variables: age, sex, hydrocephalus, mobility, urinary continence, school attendance and family size. RESULTS: Sixty two of 68 surviving children aged 10-14 were able to complete all aspects of the assessment. There was poor correlation between the VAS and HUI3 Tool (Pearson correlation 0.488). On multivariate regression, the following variables were associated with a significant change in the 10-point VAS (change in score; 95% CI): male sex (-1.45; -2.436 to -0.465), urinary continence (1.681; 0.190 to 3.172), large family size (-1.775; -2.773 to -0.777) and hydrocephalus (-1.382; -2.374 to -0.465). CONCLUSIONS: Urinary continence and family size are potentially modifiable, the former by simple and inexpensive medical management. Enhanced investment in community-based rehabilitation and support is urgently needed. Delivery of family planning services is a national priority in Uganda, and should be discussed with families as part of holistic care.
[Mh] Termos MeSH primário: Qualidade de Vida
Disrafismo Espinal/psicologia
[Mh] Termos MeSH secundário: Adolescente
Criança
Estudos Transversais
Feminino
Seres Humanos
Masculino
Inquéritos e Questionários
Uganda
[Pt] Tipo de publicação:JOURNAL ARTICLE
[Em] Mês de entrada:1710
[Cu] Atualização por classe:171031
[Lr] Data última revisão:
171031
[Sb] Subgrupo de revista:AIM; IM
[Da] Data de entrada para processamento:170512
[St] Status:MEDLINE
[do] DOI:10.1136/archdischild-2016-312307



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