Prevalence of urologic sequelae and bladder and bowel dysfunctions in patients with congenital Zika syndrome: A multicenter evaluation of the Zika virus bladder and bowel sequelae assistance network.

INTRODUCTION: Neurogenic bladder was first confirmed as a urological sequela of Congenital Zika Syndrome (CZS) in 2018. Further clinical-epidemiological evidence also confirmed neurogenic bowel dysfunction and cryptorchidism. To strengthen the care for these children, the Congenital Zika Virus Bladder and Bowel Sequelae Network (RASZ in Brazilian) was created, including six integrated centers in Brazil. This article represents the initial outcome of the efforts by RASZ. OBJECTIVE: To evaluate the prevalence of bladder and bowel dysfunction, cryptorchidism and other urological sequelae related to CZS in cohorts attended in six Brazilian states. STUDY DESIGN: Observational, prospective, multicenter study including children with CZS assisted in one of six RASZ collaborative centers between June 2016 and February 2023. Data were collected from patient's first assessment using the same protocols for urological and bowel evaluation. Categorical variables were analyzed by frequency of occurrence and numerical variables by mean, median, and standard deviation. The study was approved by the Research Ethics Committees of each center, all parents/caregivers provided written informed consent. RESULTS: The study included 414 children aged 2 months to 7 years (mean 2.77 years, SD 1.73), 227 (54.8 %) were male and 140 (33,8 %) referred urological and bowel symptoms on arrival. Prevalence of both urological and bowel sequelae was 66.7 %, 51 % of children aged 4 years and older had urinary incontinence (UI). UTI was confirmed in 23.4 % (two presented toxemia) and among males, 18.1 % had cryptorchidism. Renal ultrasonography, performed in 186 children, was abnormal in 25 (13.4 %), 7 had hydronephrosis. Among the 287 children who performed urodynamics, 283 (98.6 %) were altered: 232 had a lower bladder capacity, 144 a maximum bladder pressure of ≥40 cm H2O, and 127 did not satisfactorily empty their bladder. DISCUSSION: A higher prevalence of NLUTD, neurogenic bowel and cryptorchidism was confirmed in children with CZS. Early diagnosis and appropriate treatment, including a multidisciplinary approach, may reduce the risk of UTIs, UI and kidney damage. A limitation of the study was the inability of children to complete the protocol, specifically urodynamic evaluation, and ultrasonography. In both exams, the percentage of abnormal cases was higher than that expected in the normal population. CONCLUSION: A 66,7 % prevalence of combined urological sequelae and bladder-bowel dysfunction related to CZS was confirmed in patients evaluated in six Brazilian cohorts. The most frequent changes were related to NLUTD, neurogenic bowel, and cryptorchidism. Prevalence may be underestimated due to access restrictions to diagnostic tests.

Acrocomia aculeata associated with doxorubicin: cardioprotection and anticancer activity.

Doxorubicin (Dox) is a chemotherapeutic agent widely used in the clinic, whose side effects include cardiotoxicity, associated with decreased antioxidant defenses and increased oxidative stress. The association of Dox with natural antioxidants can extend its use if not interfering with its pharmacological potential. In this study, we aimed to understand the effects and mechanisms of the aqueous extract of Acrocomia aculeata leaves (EA-Aa) in cancer cells and the co-treatment with Dox, in in vitro and in vivo models. It was found that EA-Aa showed a relevant decrease in the viability of cancer cells (K562 and MCF-7) and increased apoptosis and death. The Dox cytotoxic effect in co-treatment with EA-Aa was increased in cancer cells. The therapeutic association also promoted a change in cell death, leading to a higher rate of apoptosis compared to the Dox group, which induced necrosis. In addition, in non-cancer cells, EA-Aa enhanced red blood cell (RBC) redox state with lower hemolysis and malondialdehyde (MDA) content and had no in vitro nor in vivo toxicity. Furthermore, EA-Aa showed antioxidant protection against Dox-induced cytotoxicity in H9c2 cells (cardiomyoblast), partially mediated by the NRF2 pathway. In vivo, EA-Aa treatment showed a relevant decrease in MDA levels in the heart, kidney, and brain, evaluated in C57Bl/6 mice induced to cardiotoxicity by Dox. Together, our results proved the effectiveness of EA-Aa in potentiating Dox anticancer effects, with antioxidant and cardioprotective activity, suggesting EA-Aa as a potential Dox pharmacological adjuvant.

Urological outcomes in children with congenital Zika syndrome: The experience of a cohort in Campina Grande, Brazil.

OBJECTIVE: To describe the urological outcomes in children with congenital Zika syndrome (CZS) and investigate the relationship between clinical and urological findings in this population. METHODS: This cross-sectional study involved children with CZS followed up by a referral centre for children with microcephaly in the state of Paraiba in northeast Brazil. The urological evaluation included clinical history, urine culture results, ultrasonography of the urinary tract, and urodynamic evaluation, following the protocol proposed by Costa Monteiro et al. (2017). Descriptive statistical analysis was performed in addition to association and correlation tests, considering clinical and urodynamic variables. RESULTS: Among the 88 children with CZS (35.5 ± 5.5 months), 97.7% had microcephaly, and 51% presented urinary tract infection (UTI) confirmed with clinical history and lab tests. The number of confirmed UTI episodes varied from one to 14 per child. The urodynamic evaluation confirmed the presence of an overactive bladder in 78 children and incomplete voiding in 50. Urodynamic findings were associated with the number of confirmed UTI episodes, child's sex, and actual weight, in addition to the use of anticonvulsant and myorelaxant drugs. CONCLUSIONS: UTIs were confirmed in most children. Other urological outcomes observed were overactive bladder and low bladder capacity, which were associated with the number of confirmed UTI episodes, use of anticonvulsants and myorelaxants, and the child's sex and weight. These are treatable conditions, and it is paramount that paediatricians, neonatologists, and infectious disease specialists are aware of them to make clinical decisions and help reduce the risk of renal damage and other morbidities.

Evaluation of bladder and bowel functions in children with microcephaly and congenital zika syndrome.

INTRODUCTION: Children with Congenital Zika Syndrome (CZS) present structural cortical changes that may compromise the integrity of their connections with urinary and digestive systems, causing bowel and bladder dysfunctions. OBJECTIVE: To evaluate bladder and bowel dysfunction (BBD) in children with CZS. STUDY DESIGN: This is an observational cross-sectional study of a series of CZS cases. Urinary tracts were investigated using a bladder function protocol consisting of clinical history, detailed physical examination, laboratory tests, ultrasound of the lower and upper urinary tracts, and urodynamic evaluation. The bowel function protocol expanded anamnesis with questions related to signs and symptoms of functional disorders, Bristol scale, and ultrasound of the rectal ampoule. RESULTS: Forty children with CZS, aged between one and five years were included. The majority (80%) had bladder and bowel dysfunction (BBD), 12.5% had bladder dysfunction only, and 7.5% only bowel dysfunction. A reduced bladder capacity was confirmed in 36 patients (90%), while 15 (40%) presented postvoid residual greater than 20% of their cystometric capacity. Thirty-five patients (87.5%) presented four signs/symptoms of functional bowel disorders and the rectal ampoule ultrasound was >2.9 cm in 21 (52.5%). Moreover, 19 (47.5%) presented urinary tract infection, while 5 (12.5%) developed pyelonephritis and required hospitalization. Renal ultrasound showed nephrolithiasis in three (7.5%), one (2.5%) presented horseshoe kidney, and a duplicated collecting system was found in three patients. Cryptorchidism was presented in eight (34%). DISCUSSION: Our study confirmed the presence of BBD in 80% of the children with CZS studied in this series. This is the first time that bowel dysfunction is confirmed in the settings of CZS. This recognition will facilitate early identification and appropriate therapies in an attempt to reduce complications. One limitation of the study is the absence of a control group. Due to the new aspects of CZS, it has been difficult to find a suitable group of patients with neurological disorders to compare and performing urodynamic studies in children without neurological or non-neurological voiding dysfunction is unethical. Appropriate control groups for future studies may be children with microcephaly due to other causes or older children with CZS who were not yet investigated or treated. Another limitation is the lack of a standard quantitative evaluation of bowel dysfunction in children with neurological disorders. CONCLUSION: Bladder and bowel dysfunction was confirmed in 80% of the children with CZS. This is a new Zika virus-associated neuromuscular disorder that needs to be further investigated.

A Clinical-Epidemiological and Geospatial Study of Tuberculosis in a Neglected Area in the Amazonian Region Highlights the Urgent Need for Control Measures.

Tuberculosis (TB) is an infectious communicable disease, which despite global efforts, still needs special attention in regions with difficult access. This study aims to describe the spatial and epidemiological trends of TB incidences from 2013 to 2018 in Marajó Island, the Amazonian region, Pará, Brazil. We have obtained secondary data from the Brazilian TB databases and performed geospatial and statistical analyses on the data for new TB cases, relapses, and re-admissions. From 2013 to 2018, 749 new cases were reported, in which the diagnostics (culture) was not performed for 652 (87.2%) patient samples, the drug resistance test (DST) was performed for nine (1.2%) samples, and one (0.13%) was multidrug-resistant TB (MDR-TB). The rapid molecular testing (RMT) was performed on 40 (5.3%) patient samples, with results indicating that eight (20%) were susceptible to rifampicin and two (5%) were rifampicin resistant. Overall, the cure rate was 449 (66.7%), while relapses and re-admissions were 41 and 44, respectively. On the geospatial distribution, the municipality of Soure stands out with a high number of incidences, relapses, and re-admissions. Spatially, the eight MDR cases were randomly distributed. Our data highlight the urgent need for TB control measures in this region, by introducing the Xpert-Ultra® MTB/RIF (Cepheid, Sunnyvale, CA, USA) and Ogawa-Kudoh.

Multidisciplinary diagnostics of chronic lymphocytic leukemia: European Research Initiative on CLL - ERIC recommendations

ABSTRACT Recent advances in chronic lymphocytic leukemia (CLL) includes description of disease genomic landscape, inclusion of prognostic relevant genetic tests in CLL workflow and evaluation of minimal residual disease (MRD)1 in parallel with the increase availability of novel therapy agents.In this review, the theoretical and practical aspects of response assessment have been discussed. These are based on updated recommendations of the European Research Initiative on Chronic Lymphocytic Leukemia (ERIC) for genetic tests (TP53 mutation and IGHV status) and flow cytometry analysis for CLL. Methodological approaches and interpretation of results were also discussed.2,3

Tumour functional imaging by PET.

Carcinogenesis is a complex multistep process, characterized by changes at different levels, both genetic and epigenetic, which alter cell metabolism. Positron emission tomography (PET) is a very sensitive image modality that allows to evaluate oncometabolism. PET functionalities are immense, since by labelling a molecule that specifically intervenes in a biochemical regulatory pathway of interest with a positron-emitting radionuclide, we can easily image that pathway. Thus, PET makes possible imaging several metabolic processes and assessing risk prediction, screening, diagnosis, response to therapy, metastization and recurrence. In this paper, we provide an overview of different radiopharmaceuticals developed for PET use in oncology, with a focus on brain tumours, breast cancer, hepatocellular carcinoma, neuroendocrine tumours, bladder cancer and prostate cancer because for these cancer types PET has been shown to be valuable. Most of the described tracers are just used in the research environment, with the aim to assess if these tracers could be able to offer an improvement concerning staging/restaging, characterization and stratification of different types of cancer, as well as therapeutic response assessment. In pursuit of personalized therapy, we briefly discuss the more established metabolic tracers and describe recent work on the development of new radiopharmaceuticals, aware that there will continue to exist diagnostic challenges to face modern cancer medicine.

Multidisciplinary diagnostics of chronic lymphocytic leukemia: European Research Initiative on CLL - ERIC recommendations.

Recent advances in chronic lymphocytic leukemia (CLL) includes description of disease genomic landscape, inclusion of prognostic relevant genetic tests in CLL workflow and evaluation of minimal residual disease (MRD)1 in parallel with the increase availability of novel therapy agents. In this review, the theoretical and practical aspects of response assessment have been discussed. These are based on updated recommendations of the European Research Initiative on Chronic Lymphocytic Leukemia (ERIC) for genetic tests (TP53 mutation and IGHV status) and flow cytometry analysis for CLL. Methodological approaches and interpretation of results were also discussed.2,3.

Immediate effect of transcutaneous electrical nerve stimulation on urodynamic parameters of children with myelomeningocele.

OBJECTIVE: To evaluate the immediate response of electrical stimulation in children with neurogenic bladder (NB) due to myelomeningocele, using the urodynamic study (UDS). METHODS: This is a nonrandomized intervention study with 26 children with neurogenic overactive bladder and low bladder compliance due to myelomeningocele, aged 5 to 15 years. Each child performed a routine UDS and then a second UDS, during which the electrical stimulation was applied in the parasacral region. The main outcome was the difference in the maximum bladder pressure observed between the two urodynamic studies, analyzed from the paired t test. RESULTS: We found that 77% of the patients had a lower maximum bladder pressure in the test with electrostimulation compared with the ones without electrostimulation. On average, the pressure reduction after stimulation was 7.24 cmH2 O (95% confidence interval [CI], 0.35-14.14; P = .04). The reduction was even higher in children under 12 years of age, compared with the children above 12 years (11.29 cmH2 O, 95% CI, 3.47-19.12; P = .01). CONCLUSION: The use of transcutaneous electrical nerve stimulation had a significant immediate effect on reducing the maximum bladder pressure during the urodynamic studies among the tested pediatric patients with NB. The results were more significant among children under 12 years of age.

Neurogenic bladder findings in patients with Congenital Zika Syndrome: A novel condition.

INTRODUCTION: Congenital Zika Syndrome (CZS) has been associated with microcephaly and other central nervous system abnormalities including areas that have been implicated in the control of the lower urinary tract. As such, this descriptive case series has aimed to investigate whether CZS is linked with neurogenic bladder. Identifying such an association is paramount in the effort to recognize CZS complications that have putative treatment options that could mitigate the impact of CZS in infected children. METHODS: Following IRB approval, urological assessment was performed in all patients referred to our clinic between June 2016 and May 2017 who presented with confirmed CZS-associated microcephaly. The research protocol consisted of obtaining clinical history, laboratory tests, lower and upper urinary tract ultrasounds, as well as a diagnostic urodynamic evaluation. ZIKA virus infection was previously confirmed by maternal history and positive PCR in babies and mothers. Microcephaly and other central nervous system abnormalities were established based on neurological assessment and associated imaging of the central nervous system (CT head and/or Brain MRI). RESULTS: Twenty-two consecutive CZS patients were tested and confirmed to have neurogenic bladder. Of the 22 patients assessed, 21 presented with an overactive bladder combined with reduced bladder capacity and elevated detrusor filling pressures. Clinically significant increases in postvoid residual (PVR) were confirmed in 40% of cases while a urinary tract infection (UTI) was identified in 23% of cases. CONCLUSION: Neurogenic bladder, a known treatable health condition, was confirmed in 100% of patients tested in this study, most presenting with high-risk urodynamic patterns known to lead to renal damage when left untreated. Follow up studies are necessary to provide further insight onto long-term disease progression and to investigate the response to standard therapies for neurogenic bladder. Nonetheless, we emphasize the importance of proactive management of neurogenic bladder and prompt referral so as to help mitigate CZS disease burden for patients and their families.

Early treatment improves urodynamic prognosis in neurogenic voiding dysfunction: 20 years of experience / Tratamento precoce melhora o prognóstico urodinâmico na disfunção miccional de origem neurogênica: 20 anos de experiência

Abstract Objective: To evaluate the association between early treatment and urodynamic improvement in pediatric and adolescent patients with neurogenic bladder. Methodology: Retrospective longitudinal and observational study (between 1990 and 2013) including patients with neurogenic bladder and myelomeningocele treated based on urodynamic results. The authors evaluated the urodynamic follow-up (bladder compliance and maximum bladder capacity and pressure) considering the first urodynamic improvement in two years as the outcome variable and early referral as the exposure variable, using a descriptive and multivariate analysis with logistic regression model. Results: Among 230 patients included, 52% had an early referral. The majority were diagnosed as overactive bladder with high bladder pressure (≥40 cm H2O) and low bladder compliance (3 mL/cmH2O) and were treated with oxybutynin and intermittent catheterization. Urodynamic follow-up results showed 68% of improvement at the second urodynamic examination decreasing bladder pressure and increasing bladder capacity and compliance. The percentage of incontinence and urinary tract infections decreased over treatment. Early referral (one-year old or less) increased by 3.5 the probability of urodynamic improvement in two years (95% CI: 1.81-6.77). Conclusion: Treatment onset within the first year of life improves urodynamic prognosis in patients with neurogenic bladder and triplicates the probability of urodynamic improvement in two years. The role of neonatologists and pediatricians in early referral is extremely important.

Resumo Objetivo: Avaliar a associação entre tratamento precoce e melhoria urodinâmica em pacientes pediátricos e adolescentes portadores de bexiga neurogênica. Metodologia: Estudo observacional longitudinal retrospectivo (entre 1990-2013) em pacientes com bexiga neurogênica e mielomeningocele tratados com base no diagnóstico urodinâmico. Avaliamos a evolução urodinâmica (complacência, capacidade e pressão vesical) e consideramos primeira melhoria urodinâmica em até dois anos como variável desfecho e encaminhamento precoce (primeira urodinâmica até um ano de vida) como exposição. Foi feita análise descritiva e multivariada com modelo de regressão logística. Resultados: Entre 230 pacientes incluídos 52% foram encaminhados precocemente. A maioria tinha bexiga hiperativa com pressão maior do que 40 cmH2O, complacência abaixo de 3 ml/cmH2O e foi tratada com oxibutinina e cateterismo intermitente. Na evolução urodinâmica, 68% apresentou melhoria já no segundo exame com redução da pressão e aumento da capacidade e da complacência vesical. O percentual de incontinência e infecção urinária diminuiu ao longo do tratamento. O encaminhamento precoce aumentou 3,5 vezes a probabilidade de melhoria urodinâmica até dois anos em relação aos encaminhados após o primeiro ano de idade (CI95% 1,81-6,77). Conclusão: Tratar no primeiro ano de vida melhora o prognóstico urodinâmico de pacientes com bexiga neurogênica, triplica a probabilidade de melhoria urodinâmica em até dois anos. A atuação do neonatologista e do pediatra, ao reconhecer e encaminhar o paciente precocemente para o diagnóstico, é extremamente importante.

Early treatment improves urodynamic prognosis in neurogenic voiding dysfunction: 20 years of experience.

OBJECTIVE: To evaluate the association between early treatment and urodynamic improvement in pediatric and adolescent patients with neurogenic bladder. METHODOLOGY: Retrospective longitudinal and observational study (between 1990 and 2013) including patients with neurogenic bladder and myelomeningocele treated based on urodynamic results. The authors evaluated the urodynamic follow-up (bladder compliance and maximum bladder capacity and pressure) considering the first urodynamic improvement in two years as the outcome variable and early referral as the exposure variable, using a descriptive and multivariate analysis with logistic regression model. RESULTS: Among 230 patients included, 52% had an early referral. The majority were diagnosed as overactive bladder with high bladder pressure (≥40cm H2O) and low bladder compliance (3mL/cmH2O) and were treated with oxybutynin and intermittent catheterization. Urodynamic follow-up results showed 68% of improvement at the second urodynamic examination decreasing bladder pressure and increasing bladder capacity and compliance. The percentage of incontinence and urinary tract infections decreased over treatment. Early referral (one-year old or less) increased by 3.5 the probability of urodynamic improvement in two years (95% CI: 1.81-6.77). CONCLUSION: Treatment onset within the first year of life improves urodynamic prognosis in patients with neurogenic bladder and triplicates the probability of urodynamic improvement in two years. The role of neonatologists and pediatricians in early referral is extremely important.

[The quality of life of Brazilian and North-American adolescents with spina bifida]. / A qualidade de vida de jovens portadores de espinha bífida brasileiros e norte-americanos.

The purpose of the present research is to explore and describe the quality of life of adolescents in two different cultural environments, the Brazilian and the North American. The point of reference of the investigation is the dimension encompassing the concept of quality of life. This qualitative research utilized semi-structured interviews and focal groups in two health-care units specialized in the care of youths with spina bifida, one in Brazil and another in the USA. The discourses reflected the need for more comprehensive categories of quality of life, not pulverizing the life experience. The results reveal inequality in the interactions between the healthy and the disabled and show that the stigma permeates all dimensions of the life of these individuals, interfering in their social inclusion, as well as in their subjective construction and self-esteem. Two fields of reference were identified for the concept of quality of life: (1) the micro-political that refers to social values, beliefs and expectations that are created through face to face encounters; and (2) the macro-political referring to the public universe, democracy and human rights.

A qualidade de vida de jovens portadores de espinha bífida brasileiros e norte-americanos / The quality of life of Brazilian and North-american adolescents with spina bifida

A pesquisa tem como objetivo explorar a qualidade da vida de jovens portadores de espinha bífida em duas culturas, brasileira e norte-americana, norteada pelo conceito de qualidade de vida. O estudo, de caráter qualitativo, utilizou entrevistas semi-estruturadas e grupos focais em duas unidades de saúde especializadas no tratamento de jovens com espinha bífida, uma no Brasil e a segunda nos Estados Unidos. Os discursos dos jovens em questão refletem a necessidade de categorias mais englobantes que não remetam a uma pulverização da experiência de vida. Os resultados tornam evidente uma estrutura de desigualdade nas interações mistas e demonstram que o estigma se encontra presente em todas as dimensões da vida dos sujeitos, interferindo na inserção social, construção subjetiva, e auto-estima do jovem. Foram identificados dois campos de referência para a noção de qualidade de vida: (1) o micropolítico, que se refere aos valores, visões, crenças e expectativas sociais construídos a partir dos encontros face a face; e (2) o macropolítico, que diz respeito ao espaço público, ao âmbito da democracia dos direitos humanos.

The purpose of the present research is to explore and describe the quality of life of adolescents in two different cultural environments, the Brazilian and the North American. The point of reference of the investigation is the dimension encompassing the concept of quality of life. This qualitative research utilized semi-structured interviews and focal groups in two health-care units specialized in the care of youths with spina bifida, one in Brazil and another in the USA. The discourses reflected the need for more comprehensive categories of quality of life, not pulverizing the life experience. The results reveal inequality in the interactions between the healthy and the disabled and show that the stigma permeates all dimensions of the life of these individuals, interfering in their social inclusion, as well as in their subjective construction and self-esteem. Two fields of reference were identified for the concept of quality of life: (1) the micro-political that refers to social values, beliefs and expectations that are created through face to face encounters; and (2) the macro-political referring to the public universe, democracy and human rights.

[Disabled adolescents: sexuality and stigma]. / Jovens portadores de deficiência: sexualidade e estigma.

This paper is designed to extend discussions of disability and sexuality, highlighting the expectations, beliefs, desires and experiences of young people with physical disability and presenting the partial findings of the doctoral research project entitled "You laugh because I am different, I laugh because you are all the same: dimensions of the quality of life in adolescents with spina bifida", which discusses the quality of life in two cultures: Brazilian and American. The perception and interest of the participants, and their need to discuss problems related to their sexuality and its implications for their families, friends and healthcare services spurred investigations of this topic in greater depth, indicating the need to address concepts of sexuality on broader bases. The discourse of these youngsters stresses four aspects related to the experience of sexuality: (1) Sexuality and care; (2) Sexuality, body image and discredited characteristics; (3) Sexuality of people with special needs from the standpoint of violence, and finally; (4) Sexuality and questions about medical information.

[Accessibility of legal benefits available in Rio de Janeiro for physically handicapped people]. / Acessibilidade a benefícios legais disponíveis no Rio de Janeiro para portadores de deficiência física.

According to PAHO, only 2 % of Latin America's 85 million disabled people receive adequate medical care. Ten percent of the world's population lives with disabilities without having access to their constitutional rights. Disability must be addressed on several levels: medical, rehabilitative, social and political. Disability is strongly linked to poverty. Stigma, discrimination and inability to pay limit access to health services and education and ill-health increases the treatment cost, creating a vicious circle that must be broken. Although the Constitution grants rights to disabled persons including access to health and education, these legal benefits are not always obtained or respected. To better understand and address the problem, the process for obtaining three of these legal benefits was studied among disabled pediatric patients with myelomeningocele in a specialized Institute in Rio de Janeiro. Results show a low achievement rate. Bureaucracy and the expenses with locomotion were main constrains worsened by lack of time and resources in families struggling with poverty. Other difficulties were lack of professional attention and confidence in the system, problems related to documents, unqualified educational system and locomotion constrains.

Acessibilidade a benefícios legais disponíveis no Rio de Janeiro para portadores de deficiência física / Accessibility of legal benefits available in Rio de Janeiro for physically handicapped people

Segundo a OPAS, só 2 por cento dos 85 milhões de pessoas com deficiência têm assistência adequada na América Latina e 10 por cento da população mundial vivem com deficiência, mas sem acesso a direitos constitucionalmente adquiridos. A deficiência precisa ser abordada em diferentes níveis: clínico, de reabilitação, social e político. Pobreza e deficiência estão fortemente relacionadas. Estigma, discriminação e incapacidade física e financeira limitam o acesso à educação e saúde, levando à cronificação e agravamento da morbidade, aumentando os custos do tratamento, formando-se um ciclo vicioso que tem que ser quebrado. Embora a Constituição Federal inclua direitos a pacientes deficientes, dando acesso à saúde e educação, eles não são obtidos e respeitados. Para compreender o problema, estudou-se o processo de obtenção de três destes benefícios em pacientes com deficiência física portadores de mielomeningocele em instituto de referência no Rio de Janeiro. Os resultados mostram um baixo índice de obtenção. A burocracia e o custo das múltiplas viagens foram as principais dificuldades para famílias próximas ou abaixo da linha de pobreza e filhos com problemas de locomoção e doença crônica. Outras dificuldades foram desinteresse profissional, descrédito, sistema educacional despreparado e dificuldades de acesso.

According to PAHO, only 2 percent of Latin America's 85 million disabled people receive adequate medical care. Ten percent of the world's population lives with disabilities without having access to their constitutional rights. Disability must be addressed on several levels: medical, rehabilitative, social and political. Disability is strongly linked to poverty. Stigma, discrimination and inability to pay limit access to health services and education and ill-health increases the treatment cost, creating a vicious circle that must be broken. Although the Constitution grants rights to disabled persons including access to health and education, these legal benefits are not always obtained or respected. To better understand and address the problem, the process for obtaining three of these legal benefits was studied among disabled pediatric patients with myelomeningocele in a specialized Institute in Rio de Janeiro. Results show a low achievement rate. Bureaucracy and the expenses with locomotion were main constrains worsened by lack of time and resources in families struggling with poverty. Other difficulties were lack of professional attention and confidence in the system, problems related to documents, unqualified educational system and locomotion constrains.

Jovens portadores de deficiência: sexualidade e estigma / Disabled adolescents: sexuality and stigma

O presente artigo pretende ampliar a discussão sobre deficiência e sexualidade valorizando as expectativas, crenças, desejos e experiências de jovens com deficiência física. Refere-se a um recorte parcial dos dados da pesquisa de doutorado "Vocês riem porque eu sou diferente, eu rio porque vocês são todos iguais: as dimensões da qualidade de vida em jovens portadores de espinha bífida", que objetivou discutir a qualidade da vida de jovens portadores de espinha bífida em duas culturas: brasileira e norte-americana. A percepção, interesse e problematização dos participantes em relação à sua sexualidade e seus desdobramentos na sua família, serviço de saúde e círculo de amizades motivaram um maior aprofundamento da temática e apontaram para a necessidade de abordar o conceito sexualidade de maneira englobante. Os discursos dos jovens priorizam quatro aspectos relacionados à vivência da sexualidade: (1) sexualidade e cuidado; (2) sexualidade, imagem corporal e as características desacreditáveis; (3) a sexualidade do portador de deficiência física através do olhar da violência, e finalmente; (4) a sexualidade e interrogação das informações médicas.

This paper is designed to extend discussions of disability and sexuality, highlighting the expectations, beliefs, desires and experiences of young people with physical disability and presenting the partial findings of the doctoral research project entitled "You laugh because I am different, I laugh because you are all the same: dimensions of the quality of life in adolescents with spina bifida", which discusses the quality of life in two cultures: Brazilian and American. The perception and interest of the participants, and their need to discuss problems related to their sexuality and its implications for their families, friends and healthcare services spurred investigations of this topic in greater depth, indicating the need to address concepts of sexuality on broader bases. The discourse of these youngsters stresses four aspects related to the experience of sexuality: (1) Sexuality and care; (2) Sexuality, body image and discredited characteristics; (3) Sexuality of people with special needs from the standpoint of violence, and finally; (4) Sexuality and questions about medical information.

A qualidade de vida de jovens portadores de espinha bífida do Children's National Medical Center – Washington DC / The quality of life of adolescents with spina bifida at the Children's National Medical Center - Washington DC

O presente artigo tem como objetivo explorar a qualidade de vida de jovens portadores de espinha bífida atendidos no Children's National Medical Center em Washington DC. A pesquisa baseia-se em uma perspectiva qualitativa que utiliza como referencial teórico central a "Teoria do estigma" e as discussões conceituais sobre as dimensões de qualidade de vida. Foram entrevistados 15 jovens do serviço acima citado, sendo que 8 deles participaram de um grupo focal construído através das questões levantadas durante entrevistas. Os discursos dos jovens em questão refletem a necessidade de categorias mais englobantes que não remetam a uma pulverização da experiência de vida. Evidenciou-se uma estrutura de desigualdade nas interações entre saudáveis e deficientes, e reproduzida pelos próprios jovens. Os resultados demonstram que o estigma se encontra presente em todas as dimensões da vida dos sujeitos, interferindo na inserção social, construção subjetiva do jovem e sua auto-estima, reforçando o papel do portador de deficiência como uma "não-pessoa". Embora a categoria sexualidade não seja priorizada em outros instrumentos para esta população, o tema se faz presente e central na discussão da experiência da vida dos mesmos.

The present article explores the quality of life of adolescents with spina bifida at the Children's National Medical Center in Washington DC. The research is based on a qualitative perspective that utilizes the "Theory of stigma" as the central theoretical framework, in addition to the discussions of the concept of quality of life and its dimensions. Fifteen adolescents were interviewed at the above institution, eight of which then participated in a focal group structured through issues that emerged during this previous phase. The discourses reflected the need for more encompassing categories for quality of life that do not pulverize the life experience. The adolescent's discourses demonstrate an inequality structure in interactions between the healthy and the disabled. The results demonstrated that stigma permeates all life dimensions of these subjects, interfering in their social inclusion, as well as in their subjective construction and self-esteem, asserting the role of the disabled as a "non-person". Finaly, we found that even though sexuality was not prioritized in other instruments that contemplate this population, the theme emerges as central to the discussion of their life experiences.

A enurese em criancas e seus significados para suas famílias: abordagem qualitativa sobre uma intervencão profissional em saúde / Child enuresis and parental meanings: a qualitative perspective for healthcare professionals

OBJETIVOS: discutir as percepcões e significados atribuídos pelas famílias acerca da enurese vivida por seus filhos, através de uma perspectiva socio-antropológica que problematiza as mesmas no contexto das questões identificadas no interior do campo dos modelos explicativos da doenca. MÉTODOS: relato de experiência, baseado em entrevistas semi-estruturadas, realizadas junto a 24 (vinte e quatro) familiares/cuidadores de criancas com quadros de enurese. RESULTADOS: as famílias de pacientes com enurese demonstram a necessidade de definir a doenca de maneira subjetiva, entendendo-a através dos sentimentos que a mesma desencadeia, das mudancas comportamentais e das diferencas encontradas no relacionamento com as outras pessoas devido à mesma. Observa-se que os significados da enurese se organizam em dois campos que se cruzam: a responsabilizacão da própria crianca por sua enurese e os fatores externos, como o ambiente familiar e a situacão econômica e social. CONCLUSÕES: recomenda-se que profissionais de saúde estejam atentos aos perigos da normatividade biomédica de seu discurso, já que o mesmo dificulta a compreensão e elaboracão dos tratamentos necessários. Profissionais de saúde devem estar informados sobre o risco de maustratos relacionados à enurese, o que justifica a discussão acerca de possíveis estratégias de enfretamento dessa realidade na acão profissional junto a essa clientela.