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STUDY DESIGN: A cross-sectional, descriptive study. OBJECTIVES: To investigate the demographic, clinical behavioral, and rehabilitation predictors of the quality of life (QoL) of people with spinal cord injury/disease (SCI/D) in a middle-income country. METHOD: Ninety-five participants living in the community were evaluated with the following instruments: World Health Organization Quality of Life - Bref; International SCI Core DataSet; Clinical Interview; Spinal Cord Secondary Conditions Scale and Patient Health Questionnaire; Numerical Pain Intensity Scale; Short-Form 12 Health Survey - Item 8 (how much pain hinders activities); Patient Health Questionnaire 2, Numerical Fatigue Scale. Data were analyzed via Spearman correlation, univariate analysis, and multiple regression to explain the effects associated with quality-of-life predictors. RESULTS: The main factors that decreased quality of life were fatigue (by 11.5%), depression (by 5.5-12.8%), pain (by 1.3 in total life quality, in the physical domain by 8.6-9.6%), sores (15.6% in the physical domain only). The practice of sports increased the total quality of life by 14.4%, in the physical domain by 11.9%, in the psychological domain by 17.2%, and in the social domain by 23.7%. CONCLUSIONS: Fatigue, risk of depression, pain, and the presence of sores are predictors of poor quality of life, and sports are a predictor of a better quality of life, for people with spinal cord injury. Multidisciplinary rehabilitation, in addition to policies, to increase accessibility and social inclusion, and incentives or subsidies for the practice of sports could improve QoL following SCI/D.

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STUDY DESIGN: Mixed methods inquiry using cognitive interviews and thematic content analysis. OBJECTIVES: Cross-validation of the concept of quality of life (QoL) and of the International Spinal Cord Injury Quality of Life Basic DataSet (SCI QoL-BDS) items across five sites in four countries: United States, Australia, Brazil, and the Netherlands. Analysis aimed to uncover patterns, differences, and similarities suggesting conceptual equivalence for overall QoL and the three SCI QoL-BDS items. SETTING: International, community. METHODS: Semi-structured cognitive interviews with 51 participants across five sites and four countries. Participants with spinal cord injury/disease (SCI/D) completed the SCI QoL-BDS items and one additional question. Interviews were audio recorded and transcribed. Transcripts were coded using NVivo software. Coded data were analyzed using thematic content analysis. Seventeen themes were identified. Responses by sites were compared for conceptual equivalence. RESULTS: Across the five sites, equivalence in the conceptual meaning of QoL was found based on the frequent commonalities in terminology employed to describe it. Despite sample differences in terms of demographic and SCI characteristics, participants across all sites replied to the SCI QoL-BDS items in a similar way, suggesting good item equivalence. Qualitatively, the differences noted with respect to the use of themes for each question suggest some variability on how participants with SCI/D describe QoL. In spite of these contextual differences, there is a high degree of commonalty not explained by participants' demographic or injury/disease characteristics. CONCLUSIONS: The SCI QoL-BDS shows good cross-cultural validity among the international sites included in this study.

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Avaliar a qualidade de vida (QV) de pessoas com lesão medular traumática (LMT) e sua associação com o tempo de LMT. Estudo quantitativo, analítico e transversal. Os dados foram coletados com dois instrumentos validados (questionário biosociodemográfico e Data Set de QV da International Spinal Cord Society). Amostra com 81 participantes, 81,5% do sexo masculino, com média de idade de 36±11,9 anos. A satisfação com a saúde psicológica apresentou maior escore (7,2), apesar disso, 86,4% estavam insatisfeitos ou completamente insatisfeitos com a QV geral. Não houve diferença quando comparado o nível da LMT com satisfação com a vida como um todo (p=0,237). A QV geral foi associada ao tempo de LMT (p=0,005), sugerindo que após cinco anos da LMT, as pessoas tendem a ficar mais satisfeitas com suas vidas. Este estudo mostrou que a maioria dos participantes com LMT apresentam-se insatisfeitos com a qualidade de vida.

The aim of this quantitative, analytical and cross-sectional study was to assess the quality of life (QOL) of people with a traumatic spinal cord injury (SCI) and its association with the length of time of SCI. Data were collected using two validated instruments (a biological and sociodemographic questionnaire and the QOL Data Set from the International Spinal Cord Society). The sample included 81 participants, 81.5% male, with a mean age of 36±11.9 years. Satisfaction with psychological health had a higher score (7.2), despite 86.4% being dissatisfied or completely dissatisfied with overall QOL. There was no difference when comparing the SCI level to satisfaction with overall life (p=0.237). General QOL was associated with the length of time of SCI (p=0.005), suggesting that after five years of SCI, people tend to be more satisfied with their lives. This study showed that most participants with SCI are dissatisfied with their quality of life.

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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.

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RESUMO Objetivo: traduzir e adaptar para a língua portuguesa o data set do trato urinário inferior para indivíduos com lesão medular proposto pela International Spinal Cord Society e American Spinal Injury Association. Método: constitui-se de um estudo metodológico de tradução de instrumento, com a participação de um grupo de cinco especialistas que participaram das fases de tradução e retrotradução e cinco juízes. O Data set foi traduzido e adaptado segundo as recomendações metodológicas da International Spinal Cord Society e American Spinal Injury Association. Resultados: para a etapa de tradução, 56% das sentenças foram traduzidas com unanimidade pelos três tradutores convidados. Das nove questões que compunham o instrumento apenas quatro apresentaram divergências. Conclusão: obteve-se um instrumento traduzido e culturalmente adaptado para avaliação do trato urinário inferior de pessoas com lesão medular em língua portuguesa, proporcionando a participação brasileira nos estudos multicêntricos internacionais sobre lesão medular.

RESUMEN Objetivo: traducir y adaptar para la lengua portuguesa el data set del tracto urinario inferior para los individuos con lesión medular propuesto por la International Spinal Cord Society y la American Spinal Injury Association. Método: se realizó un estudio metodológico de traducción del instrumento con la participación de un grupo de cinco especialistas que participaron de las fases de traducción, retrotraducción, y también, cinco jueces. El data set fue traducido y adaptado según las recomendaciones metodológicas de International Spinal Cord Society y la American Spinal Injury Association.. Resultados: para la etapa de traducción, 56% de las oraciones fueron traducidas con unanimidad por los tres traductores invitados. De las nueve preguntas que componían el instrumento solo cuatro de ellas presentaron divergencias. Conclusión: se obtuvo un instrumento traducido y culturalmente adaptado para la evaluación del tracto urinario inferior de personas con lesiones medulares en lengua portuguesa, proporcionando la participación brasileña en los estudios multicéntricos internacionales sobre la lesión medular.

ABSTRACT Objective: to translate and adapt to the Portuguese language the data set of the lower urinary tract for individuals with spinal cord injury. International Spinal Cord Society and the American Spinal Injury Association. Method: this is a methodological study of instrument translation, with the participation of a group of five experts who took part in the translation and back translation phases and five judges. The Data set has been translated and adapted according to the methodological recommendations of International Spinal Cord Society and the American Spinal Injury Association. Results: for the translation stage, 56% of the sentences were unanimously translated by the three invited translators. Of the nine questions that comprised the instrument only four showed differences. Conclusion: a translated and culturally adapted instrument for the evaluation of the lower urinary tract of people with spinal cord injury in the Portuguese language was obtained, guaranteeing the Brazilian participation in international multicenter studies on the spinal cord injury.

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A major complication for individuals with spina bifida (SB) is managing their neurogenic bladder. For many, this process evokes negative feelings associated with guilt, dependence, and lack of self-worth. PURPOSE: The aim of the study was to compare feelings that hinder the performing of intermittent bladder catheterization reported by individuals with SB and their families in two countries of different sociocultural characteristics: Brazil and Germany. DESIGN AND METHODS: Quantitative and comparative study with convenience sampling. The sample comprised 200 SB patients and their caregivers, 100 from Brazil and 100 from Germany. FINDINGS: When asked about the existence of negative feelings or ideas that may hinder the performance of key person responsible for IC, 155 (77.5%) participants did not report such feelings. On the other hand, 45 (22.5%) reported emotional difficulties; among these participants, 31 (69%) were Brazilians and 14 (31%) were Germans. CONCLUSIONS AND CLINICAL RELEVANCE: Although emotional factors are important to the adjustment of using IC methods for bladder management, the majority of people with SB and their caregivers seem to report no major emotional difficulties with this process. Yet a considerable group of participants did report such emotional difficulties associated with fear and shame. Knowing more about the factors associated with such negative feelings can facilitate interactions, provide mutual aid, and assist with resolution of practical concerns related to intermittent bladder catheterization.

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Over the past half century Brazil has undergone a process of dramatic industrialization and urbanization. Cardiovascular diseases (CVD) have become common due to rapid demographic, epidemiologic, and nutritional transitions. The association of social mobility with subclinical CVD has been rarely explored, particularly in developing societies. We investigated the association of intra- and inter-generational social mobility with carotid intima-media thickness (IMT), a marker of subclinical or asymptomatic atherosclerosis, in a large Brazilian sample (ELSA-Brasil). We used baseline data (2008-2010) for 7343 participants from ELSA-Brasil. Intra-generational social mobility was defined as the change in occupational social class between participants' first occupation and current occupation. Inter-generational social mobility was defined as the change in occupational social class of the head of the household when the participant started working and participants' current occupation. Social mobility groups were classified as: stable high (reference), upward, downward and stable low. Linear regression models were used to examine the associations between type of social mobility and IMT. Compared to those who experienced stable high occupational status across generations, downward inter-generational mobility was associated with greater IMT. Additionally, those who declined the most in occupational status had the highest values of IMT, even after adjustments for lifestyle and cardiovascular factors. For intra-generational mobility, stable low versus stable high social mobility was independently associated with higher IMT. Subclinical atherosclerosis is patterned by socioeconomic status both within and across generations, demonstrating an association even before symptoms of CVD appear. The health consequences of downward inter-generational social mobility were not fully explained by lifestyle and cardiovascular factors, whereas being consistently exposed to low occupational status within one's own adulthood was associated with greater IMT, suggesting a cumulative risk model. Primary prevention of atherosclerosis should be complemented by macrosocial policies aimed to reduce downward socioeconomic mobility between generations.

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Assessing the driving abilities of individuals with disabilities is often a very challenging task because each medical condition is accompanied by physical impairments and because relative individual functional performance may vary depending on personal characteristics.We identified existing driving evaluation modalities for able-bodied and lower extremity-impaired subjects (spinal cord injury patients and amputees) and evaluated the potential relationships between driving performance and the motor component of driving.An extensive scoping review of the literature was conducted to identify driving assessment tools that are currently used for able-bodied individuals and for those with spinal cord injury or lower extremity amputation. The literature search focused on the assessment of the motor component of driving. References were electronically obtained via Medline from the PubMed, Ovid, Web of Science and Google Scholar databases.This article compares the current assessments of driving performance for those with lower extremity impairments with the assessments used for able-bodied persons. Very few articles were found concerning "Lower Extremity Disabilities," thus confirming the need for further studies that can provide evidence and guidance for such assessments in the future. Little is known about the motor component of driving and its association with the other driving domains, such as vision and cognition. The available research demonstrates the need for a more evidenced-based understanding of how to best evaluate persons with lower extremity impairment.

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Assessing the driving abilities of individuals with disabilities is often a very challenging task because each medical condition is accompanied by physical impairments and because relative individual functional performance may vary depending on personal characteristics.We identified existing driving evaluation modalities for able-bodied and lower extremity-impaired subjects (spinal cord injury patients and amputees) and evaluated the potential relationships between driving performance and the motor component of driving.An extensive scoping review of the literature was conducted to identify driving assessment tools that are currently used for able-bodied individuals and for those with spinal cord injury or lower extremity amputation. The literature search focused on the assessment of the motor component of driving. References were electronically obtained via Medline from the PubMed, Ovid, Web of Science and Google Scholar databases.This article compares the current assessments of driving performance for those with lower extremity impairments with the assessments used for able-bodied persons. Very few articles were found concerning “Lower Extremity Disabilities,” thus confirming the need for further studies that can provide evidence and guidance for such assessments in the future. Little is known about the motor component of driving and its association with the other driving domains, such as vision and cognition. The available research demonstrates the need for a more evidenced-based understanding of how to best evaluate persons with lower extremity impairment.

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