The Epidemiology of Takayasu Arteritis in Rio de Janeiro, Brazil: A Large Population-Based Study.

OBJECTIVE: Few population-based studies for Takayasu arteritis (TAK) have been performed, and Latin America prevalence/incidence data are unavailable. We aimed to understand TAK epidemiology in Rio de Janeiro City in 2020 (i.e., 6,747,815 inhabitants). METHODS: This was a cross-sectional fieldwork study where physicians who regularly followed TAK patients in public or private practices from Rio de Janeiro were invited to complete a REDCap survey. Patients should fulfill internationally accepted criteria for TAK and be living in the city. The 2020 prevalence was calculated as cases per 1,000,000 inhabitants (10 6 ). National government databases were analyzed for comparative prevalence assessment. The incidence rate was estimated using retrospective sections of cases diagnosed between 2010 and 2019; relative incidence risk was assessed by Poisson regression models with robust variance. RESULTS: Between May 2020 and May 2021, 114 patients were analyzed. Ninety-seven (85.1%) were female, and the most frequent races were White (44.7%), Mestizo (33.3%), and Black (16.7%). Takayasu arteritis 2020 prevalence was 16.9 cases/10 6 (95% confidence interval [CI], 14.1-20.3 cases/10 6 ); female patients and Black Brazilians had higher prevalence rates at 27.0 (95% CI, 22.2-33.3) and 25.1 cases/10 6 (95% CI, 16.1-39.3 cases/10 6 ), respectively. Government databases' analyses generated a lower prevalence (7.26 cases/10 6 ; 95% CI, 5.49-9.60 cases/10 6 ). The 2010-2019 mean incidence rate was 0.94 cases/10 6 per year (95% CI, 0.73-1.21 cases/10 6 ). Female patients had a higher risk than male patients of having TAK between 2010 and 2019 (relative risk, 2.70; 95% CI, 1.59-4.55; p < 0.0001). CONCLUSION: In the largest population-based fieldwork to date and the first Latin American study on TAK prevalence, Rio de Janeiro City in 2020 showed an intermediate prevalence between Europe and Asia. Female patients and Black Brazilians were more affected than the general population.

Quality of life as a prognostic marker in pulmonary arterial hypertension.

BACKGROUND: Improvement in quality of life together with better survival are the ultimate goals in the treatment of pulmonary arterial hypertension (PAH) patients. The objective of this study was to evaluate the health-related quality of life (HRQL) of pulmonary arterial hypertension (PAH) patients with the SF-36 generic questionnaire and to identify the prognostic implication of this assessment. METHODS: Fifty-four consecutive newly diagnosed PAH patients (WHO classification group I) in a single PAH reference center were included. Patients were evaluated at baseline for clinical and hemodynamic parameters, and they subsequently received first-line therapy with either an endothelin receptor antagonist or a phosphodiesterase-5 inhibitor. After 16 weeks of specific PAH therapy, all patients were re-evaluated using a 6MWT and a SF 36 questionnaire, and then they were followed up for at least 36 months. RESULTS: After treatment, the patients demonstrated an improved 6MWT (414 ± 124 m vs. 440 ± 113 m, p = 0.001). Specific PAH therapy also improved the HRQL scores.Patients with a baseline Physical Component Score (PCS) higher than 32 had a better survival rate than those who had a score under 32 (p = 0.04). Similarly, patients with a PCS of at least a 38 after the 16 week therapy period had a better survival rate when compared with those who did not achieve this value (p = 0.016). Unlike the absolute PCS values, the post-treatment PCS variability was unable to predict better survival rates (p = 0.58). CONCLUSIONS: Our findings suggest that HRQL is associated with prognosis in PAH. Furthermore, achieving pre-determined PCS scores might represent a specific goal to be reached in treatment-to-target strategies.

The skin tissue is adversely affected by TNF-alpha blockers in patients with chronic inflammatory arthritis: a 5-year prospective analysis.

OBJECTIVE: We evaluated the incidence of and the main risk factors associated with cutaneous adverse events in patients with chronic inflammatory arthritis following anti-TNF-α therapy. METHODS: A total of 257 patients with active arthritis who were taking TNF-α blockers, including 158 patients with rheumatoid arthritis, 87 with ankylosing spondylitis and 12 with psoriatic arthritis, were enrolled in a 5-year prospective analysis. Patients with overlapping or other rheumatic diseases were excluded. Anthropometric, socioeconomic, demographic and clinical data were evaluated, including the Disease Activity Score-28, Bath Ankylosing Spondylitis Disease Activity Index and Psoriasis Area Severity Index. Skin conditions were evaluated by two dermatology experts, and in doubtful cases, skin lesion biopsies were performed. Associations between adverse cutaneous events and clinical, demographic and epidemiological variables were determined using the chi-square test, and logistic regression analyses were performed to identify risk factors. The significance level was set at p<0.05. RESULTS: After 60 months of follow-up, 71 adverse events (73.85/1000 patient-years) were observed, of which allergic and immune-mediated phenomena were the most frequent events, followed by infectious conditions involving bacterial (47.1%), parasitic (23.5%), fungal (20.6%) and viral (8.8%) agents. CONCLUSION: The skin is significantly affected by adverse reactions resulting from the use of TNF-α blockers, and the main risk factors for cutaneous events were advanced age, female sex, a diagnosis of rheumatoid arthritis, disease activity and the use of infliximab.

The skin tissue is adversely affected by TNF-alpha blockers in patients with chronic inflammatory arthritis: a 5-year prospective analysis

OBJECTIVE: We evaluated the incidence of and the main risk factors associated with cutaneous adverse events in patients with chronic inflammatory arthritis following anti-TNF-α therapy. METHODS: A total of 257 patients with active arthritis who were taking TNF-α blockers, including 158 patients with rheumatoid arthritis, 87 with ankylosing spondylitis and 12 with psoriatic arthritis, were enrolled in a 5-year prospective analysis. Patients with overlapping or other rheumatic diseases were excluded. Anthropometric, socioeconomic, demographic and clinical data were evaluated, including the Disease Activity Score-28, Bath Ankylosing Spondylitis Disease Activity Index and Psoriasis Area Severity Index. Skin conditions were evaluated by two dermatology experts, and in doubtful cases, skin lesion biopsies were performed. Associations between adverse cutaneous events and clinical, demographic and epidemiological variables were determined using the chi-square test, and logistic regression analyses were performed to identify risk factors. The significance level was set at p<0.05. RESULTS: After 60 months of follow-up, 71 adverse events (73.85/1000 patient-years) were observed, of which allergic and immune-mediated phenomena were the most frequent events, followed by infectious conditions involving bacterial (47.1%), parasitic (23.5%), fungal (20.6%) and viral (8.8%) agents. CONCLUSION: The skin is significantly affected by adverse reactions resulting from the use of TNF-α blockers, and the main risk factors for cutaneous events were advanced age, female sex, a diagnosis of rheumatoid arthritis, disease activity and the use of infliximab. .

Quality of life measurements in patients with osteoporosis and fractures.

To review all specific questionnaires regarding quality of life in osteoporosis and to describe their distinctive indications, we searched Medline, the Scientific Electronic Library Online database, and the Latin-American and Caribbean Health Sciences Literature database. Nine specific questionnaires related to osteoporosis quality of life were found: 1) the Women's Health Questionnaire, 2) Osteoporosis Quality of Life Questionnaire, 3) Osteoporosis Assessment Questionnaire, 4) Osteoporosis Functional Disability Questionnaire, 5) Quality of Life Questionnaire of the European Foundation for Osteoporosis, 6) Osteoporosis-Targeted Quality of Life Questionnaire, 7) Japanese Osteoporosis Quality of Life Questionnaire, 8) the 16-item Assessment of Health-Related Quality of Life in Osteoporosis, and 9) the Quality of Life Questionnaire in Osteoporosis (QUALIOST™). The Quality of Life Questionnaire of the European Foundation for Osteoporosis is the osteoporosis-specific questionnaire most commonly used in the literature. The Quality of Life Questionnaire of the European Foundation for Osteoporosis and the Osteoporosis Quality of Life Questionnaire are targeted more toward fracture assessment, and the Osteoporosis Functional Disability Questionnaire can be used for longitudinal studies involving exercise. In the present study, the authors summarize all of the specific questionnaires for osteoporosis and demonstrate that these questionnaires should be selected based on the objectives to be evaluated. Osteoporosis-specific quality of life questionnaires should be validated in the language of the country of origin before being used.

Quality of life measurements in patients with osteoporosis and fractures

To review all specific questionnaires regarding quality of life in osteoporosis and to describe their distinctive indications, we searched Medline, the Scientific Electronic Library Online database, and the Latin-American and Caribbean Health Sciences Literature database. Nine specific questionnaires related to osteoporosis quality of life were found: 1) the Women's Health Questionnaire, 2) Osteoporosis Quality of Life Questionnaire, 3) Osteoporosis Assessment Questionnaire, 4) Osteoporosis Functional Disability Questionnaire, 5) Quality of Life Questionnaire of the European Foundation for Osteoporosis, 6) Osteoporosis-Targeted Quality of Life Questionnaire, 7) Japanese Osteoporosis Quality of Life Questionnaire, 8) the 16-item Assessment of Health-Related Quality of Life in Osteoporosis, and 9) the Quality of Life Questionnaire in Osteoporosis (QUALIOST TM). The Quality of Life Questionnaire of the European Foundation for Osteoporosis is the osteoporosis-specific questionnaire most commonly used in the literature. The Quality of Life Questionnaire of the European Foundation for Osteoporosis and the Osteoporosis Quality of Life Questionnaire are targeted more toward fracture assessment, and the Osteoporosis Functional Disability Questionnaire can be used for longitudinal studies involving exercise. In the present study, the authors summarize all of the specific questionnaires for osteoporosis and demonstrate that these questionnaires should be selected based on the objectives to be evaluated. Osteoporosis-specific quality of life questionnaires should be validated in the language of the country of origin before being used.

Estratégia de troca entre agentes anti-TNF-alfa não melhora a capacidade funcional em pacientes com artrite reumatoide de longa evolução / Switching between anti-TNF-alpha agents does not improve functional capacity in patients with long-standing and active rheumatoid arthritis

OBJETIVOS: Avaliar a resposta clínica após a estratégia de troca entre agentes antifator de necrose tumoral alfa (anti-TNF-alfa) em pacientes com artrite reumatoide (AR). PACIENTES E MÉTODOS: Foram incluídos 99 pacientes com diagnóstico de AR (American College of Rheumatology, 1987), em uso de terapia anti-TNF-alfa, para avaliação da resposta terapêutica após 24 semanas. A estratégia de troca foi feita se, após 12 a 24 semanas, houvesse relato de evento adverso sério (T: toxicidade) ou se não ocorresse redução maior que 0,6 do índice de atividade da doença (DAS28) inicial (RI: resposta inadequada). Nesse último caso, o paciente foi considerado como falência primária (FP). Falência secundária (FS) foi definida se houvesse perda de resposta após melhora inicial. Remissão (DAS28 < 2,6), baixa atividade de doença (2,61 < 3,2) e melhora funcional [aumento > 0,2 do questionário de avaliação da saúde (HAQ) inicial] foram avaliadas por análise de regressão linear. P < 0,05 foi considerado significante. RESULTADOS: A estratégia de troca foi realizada em 39 (39,4 por cento) pacientes, especialmente por FP (24,3 por cento), FS (35,1 por cento) e T (40,5 por cento). A taxa de retenção ao primeiro agente foi de 60,1 por cento, e o tempo médio para a troca foi de 14,2 ± 10,9 meses. Após a troca, houve tendência à queda do DAS28 (4,7 ± 1,4; P = 0,08), mas não do HAQ (1,2 ± 0,77; P = 0,11). Cerca de 43 por cento deles alcançaram boa/moderada resposta EULAR. O principal determinante da troca foi o DAS28 inicial mais elevado, independente de idade, tempo de doença e capacidade funcional. CONCLUSÃO: A estratégia de troca entre agentes anti-TNF-alfa é válida para o controle da atividade de doença, embora com baixa probabilidade de remissão e sem melhora significativa da capacidade funcional.

OBJECTIVES: To assess clinical response after switching between anti-tumor necrosis factor-alpha (anti-TNF-alpha) agents in patients with rheumatoid arthritis (RA). PATIENTS AND METHODS: This study included 99 patients diagnosed with RA American College of Rheumatology, 1987), on anti-TNF-alpha therapy, to assess the therapeutic response after 24 weeks. Switching was performed if, after 12 to 24 weeks, a severe adverse event was reported (toxicity: T) or if no reduction greater than 0.6 in the initial Disease Activity Score 28 (DAS28) occurred (inadequate response: IR). In case of IR, the patient was considered as primary failure (PF). Secondary failure (SF) was defined as loss of response after initial improvement. Remission (DAS28 < 2.6), low disease activity (between 2.61 and 3.2), and functional improvement [increase in the initial Health Assessment Questionnaire (HAQ) > 0.2] were assessed by use of linear regression analysis. The significance level adopted was P < 0.05. RESULTS: Switching was performed in 39 (39.4 percent) patients, especially due to PF (24.3 percent), SF (35.1 percent) and T (40.5 percent). The retention rate of the first agent was 60.1 percent, and the mean time for switching was 14.2 ± 10.9 months. After switching, a tendency towards a decrease in DAS28 was observed (4.7 ± 1.4; P = 0.08), but not in the HAQ (1.2 ± 0.77; P = 0.11). Around 43 percent of the patients achieved good/moderate EULAR response. The major determinant of switching was a higher initial DAS28, independent of age, duration of disease, and functional capacity. CONCLUSION: Switching between anti-TNF-alpha agents is a valid strategy to control disease activity, despite the low likelihood of remission and no significant improvement in functional capacity.

Switching between anti-TNF-alpha agents does not improve functional capacity in patients with long-standing and active rheumatoid arthritis.

OBJECTIVES: To assess clinical response after switching between anti-tumor necrosis factor-alpha (anti-TNF-alpha) agents in patients with rheumatoid arthritis (RA). PATIENTS AND METHODS: This study included 99 patients diagnosed with RA American College of Rheumatology, 1987), on anti-TNF-alpha therapy, to assess the therapeutic response after 24 weeks. Switching was performed if, after 12 to 24 weeks, a severe adverse event was reported (toxicity: T) or if no reduction greater than 0.6 in the initial Disease Activity Score 28 (DAS28) occurred (inadequate response: IR). In case of IR, the patient was considered as primary failure (PF). Secondary failure (SF) was defined as loss of response after initial improvement. Remission (DAS28 < 2.6), low disease activity (between 2.61 and 3.2), and functional improvement [increase in the initial Health Assessment Questionnaire (HAQ) > 0.2] were assessed by use of linear regression analysis. The significance level adopted was P < 0.05. RESULTS: Switching was performed in 39 (39.4%) patients, especially due to PF (24.3%), SF (35.1%) and T (40.5%). The retention rate of the first agent was 60.1%, and the mean time for switching was 14.2 ± 10.9 months. After switching, a tendency towards a decrease in DAS28 was observed (4.7 ± 1.4; P = 0.08), but not in the HAQ (1.2 ± 0.77; P = 0.11). Around 43% of the patients achieved good/moderate EULAR response. The major determinant of switching was a higher initial DAS28, independent of age, duration of disease, and functional capacity. CONCLUSION: Switching between anti-TNF-alpha agents is a valid strategy to control disease activity, despite the low likelihood of remission and no significant improvement in functional capacity.

Autologous stem cell transplantation improves quality of life in economically challenged, Brazilian multiple myeloma patients.

OBJECTIVES: 1) To characterize the impact of multiple myeloma on the quality of life of patients treated in two public institutions in São Paulo State, Brazil, using a generic Short Form 36 Health Survey and a questionnaire specific for oncologic patients (QLQ-C30) upon diagnosis, after the clinical treatment, and at day +100 after autologous stem cell transplantation; 2) to evaluate whether autologous stem cell transplantation can improve the quality of life of our economically challenged population aside from providing a clinical benefit and disease control. METHODS: We evaluated 49 patients with multiple myeloma (a total of 70 interviews) using the two questionnaires. The scores upon diagnosis, post-treatment/pre-autologous stem cell transplantation, and at D+100 were compared using ANOVA (a comparison of the three groups), post hoc tests (two-by-two comparisons of the three groups), and paired t-tests (the same case at two different times). RESULTS: Of the included patients, 87.8% had a family budget under US $600 (economic class C, D, or E) per month. The generic Short Form 36 Health Survey questionnaire demonstrated that physical function, role-physical, and bodily pain indices were statistically different across all three groups, favoring the D+100 autologous stem cell transplantation group (ANOVA). The questionnaire specific for oncologic patients, the QLQ-C30 questionnaire, confirmed what had been demonstrated by the Short Form 36 Health Survey with respect to physical function and bodily pain, with improvements in role functioning, fatigue, and lack of appetite and constipation, favoring the D+100 autologous stem cell transplant group (ANOVA). The post hoc tests and paired t-tests confirmed a better outcome after autologous stem cell transplantation CONCLUSION: The questionnaire specific for cancer patients seems to be more informative than the generic Short Form 36 Health Survey questionnaire and reflects the real benefit of autologous stem cell transplantation in the quality of life of multiple myeloma patients in two public Brazilian institutions that provide assistance for economically challenged patients.

Autologous stem cell transplantation improves quality of life in economically challenged, brazilian multiple myeloma patients

OBJECTIVES: 1) To characterize the impact of multiple myeloma on the quality of life of patients treated in two public institutions in São Paulo State, Brazil, using a generic Short Form 36 Health Survey and a questionnaire specific for oncologic patients (QLQ-C30) upon diagnosis, after the clinical treatment, and at day +100 after autologous stem cell transplantation; 2) to evaluate whether autologous stem cell transplantation can improve the quality of life of our economically challenged population aside from providing a clinical benefit and disease control. METHODS: We evaluated 49 patients with multiple myeloma (a total of 70 interviews) using the two questionnaires. The scores upon diagnosis, post-treatment/pre-autologous stem cell transplantation, and at D+100 were compared using ANOVA (a comparison of the three groups), post hoc tests (two-by-two comparisons of the three groups), and paired t-tests (the same case at two different times). RESULTS: Of the included patients, 87.8 percent had a family budget under US $600 (economic class C, D, or E) per month. The generic Short Form 36 Health Survey questionnaire demonstrated that physical function, role-physical, and bodily pain indices were statistically different across all three groups, favoring the D+100 autologous stem cell transplantation group (ANOVA). The questionnaire specific for oncologic patients, the QLQ-C30 questionnaire, confirmed what had been demonstrated by the Short Form 36 Health Survey with respect to physical function and bodily pain, with improvements in role functioning, fatigue, and lack of appetite and constipation, favoring the D+100 autologous stem cell transplant group (ANOVA). The post hoc tests and paired t-tests confirmed a better outcome after autologous stem cell transplantation CONCLUSION: The questionnaire specific for cancer patients seems to be more informative than the generic Short Form 36 Health Survey questionnaire and reflects the real benefit of autologous stem cell transplantation in the quality of life of multiple myeloma patients in two public Brazilian institutions that provide assistance for economically challenged patients.

The burden of osteoporosis in Brazil: regional data from fractures in adult men and women--the Brazilian Osteoporosis Study (BRAZOS).

OBJECTIVES: The BRAZOS (The Brazilian Osteoporosis Study) study is the first epidemiological and population-based study carried out in a representative sample of Brazilian men and women, 40 years or older, with the objective of identifying the prevalence and main clinical risk factors (CRF) associated with low-impact fractures. This report shows the main results according to each region of the country. PATIENTS AND METHODS: A total of 2,420 subjects (70% women) from 150 different cities in five geographic regions in Brazil, and from all different socio-economical classes were included in this study. Anthropometrical data, as well life style, previous fractures, nutritional status, physical activity, falls, and quality of life were evaluated by a quantitative individual survey. Low-impact fracture was defined as that resulting from a fall no greater than standing height of an individual. A P < 0.05 was considered significant. RESULTS: Statistically significant differences in the prevalence of fractures among the five Brazilian regions according to gender or social class were not observed. However, in women, a higher incidence of fractures was observed in metropolitan areas than in rural areas, and a tendency for a higher frequency of fractures was observed in men from Northeastern states. Statistically significant differences among men from metropolitan areas or rural areas were not observed. CONCLUSIONS: Significant differences in the prevalence of low-impact fractures among the five different regions of Brazil were not observed, as well as its frequency or relevance of risk factors.

O impacto da osteoporose no Brasil: dados regionais das fraturas em homens e mulheres adultos: The Brazilian Osteoporosis Study (BRAZOS) / The burden of osteoporosis in Brazil: regional data from fractures in adult men and women: The Brazilian Osteoporosis Study (BRAZOS)

INTRODUÇÃO/OBJETIVOS: O BRAZOS (The Brazilian Osteoporosis Study) é um estudo epidemiológico, de base populacional, realizado em amostra representativa de mulheres e homens brasileiros, de idade superior a 40 anos, com o objetivo de identificar os principais fatores clínicos de risco associados com fratura por baixo impacto. Nesse artigo são apresentados os principais resultados do estudo, de acordo com cada região do país. PACIENTES E MÉTODOS: Um total de 2.420 indivíduos, provenientes das cinco regiões do país e de todas as classes socioeconômicas foram incluídos no estudo. Foram avaliados dados antropométricos, bem como aspectos relacionados aos hábitos de vida, fraturas, ingestão alimentar, atividade física, quedas e qualidade de vida por meio de entrevista individual e quantitativa. Fratura por baixo impacto foi definida como aquela decorrente de queda da própria altura ou menos. Valor de P < 0,05 foi considerado como estatisticamente significante. RESULTADOS: Não houve diferença estatisticamente significativa da prevalência de fratura nas cinco regiões do Brasil, de acordo com o sexo ou classe social. No entanto, nas mulheres, houve maior ocorrência de fraturas na região metropolitana do que nos municípios do interior dos estados e tendência a maior frequência de fraturas em homens da região nordeste. Não foi verificada diferença estatisticamente significativa de fraturas se os homens eram provenientes das capitais ou do interior dos estados. CONCLUSÕES: De acordo com os nossos resultados, não foi observada diferença significativa da prevalência de fraturas por baixo impacto nem da frequência ou relevância de fatores de risco entre as cinco regiões do Brasil.

OBJECTIVES: The BRAZOS (The Brazilian Osteoporosis Study) study is the first epidemiological and population-based study carried out in a representative sample of Brazilian men and women, 40 years or older, with the objective of identifying the prevalence and main clinical risk factors (CRF) associated with low-impact fractures. This report shows the main results according to each region of the country. PATIENTS AND METHODS: A total of 2,420 subjects (70 percent women) from 150 different cities in five geographic regions in Brazil, and from all different socio-economical classes were included in this study. Anthropometrical data, as well life style, previous fractures, nutritional status, physical activity, falls, and quality of life were evaluated by a quantitative individual survey. Low-impact fracture was defined as that resulting from a fall no greater than standing height of an individual. A P < 0.05 was considered significant. RESULTS: Statistically significant differences in the prevalence of fractures among the five Brazilian regions according to gender or social class were not observed. However, in women, a higher incidence of fractures was observed in metropolitan areas than in rural areas, and a tendency for a higher frequency of fractures was observed in men from Northeastern states. Statistically significant differences among men from metropolitan areas or rural areas were not observed. CONCLUSIONS: Significant differences in the prevalence of low-impact fractures among the five different regions of Brazil were not observed, as well as its frequency or relevance of risk factors.

Nutrient intakes related to osteoporotic fractures in men and women--the Brazilian Osteoporosis Study (BRAZOS).

BACKGROUND: Adequate nutrition plays an important role in bone mass accrual and maintenance and has been demonstrated as a significant tool for the prevention of fractures in individuals with osteoporosis. OBJECTIVE: The aim of the present study was to evaluate bone health-related nutrients intake and its association with osteoporotic fractures in a representative sample of 2344 individuals aged 40 years or older in Brazil. METHODS: In a transversal population-based study, a total of 2420 individuals over 40 years old were evaluated from March to April 2006. Participants were men and women from all socio-economic classes and education levels living around the Brazilian territory Individuals responded a questionnaire including self reported fractures as well a 24-hour food recall. Nutrient intakes were evaluated by Nutrition Data System for Research software (NDSR, University of Minnesota, 2007). Low trauma fracture was defined as that resulting of a fall from standing height or less. Nutrient intakes adequacies were performed by using the DRI's proposed values. Statistical analysis comprises Oneway ANCOVA adjusted by age and use of nutritional supplements and multiple logistic regression. SAS software was used for statistical analysis. RESULTS: Fractures was reported by 13% of men and 15% of women. Women with fractures presented significantly higher calcium, phosphorus and magnesium intakes. However, in all regions and socio-economical levels mean intakes of bone related nutrients were below the recommended levels. It was demonstrated that for every 100 mg/phosphorus increase the risk of fractures by 9% (OR 1.09; IC95% 1.05-1.13, p < 0.001). CONCLUSION: The results demonstrated inadequacies in bone related nutrients in our population as well that an increase in phosphorus intake is related to bone fractures.

Health-related quality of life in Brazilian pacemaker patients.

BACKGROUND: Most quality of life (QoL) studies of pacemaker patients have been conducted in either North America or Europe and their applicability to Latin American populations is largely unknown. Our aim is to study health-related QoL indices in Brazilian pacemaker patients and their determinants using both a generic (SF-36) and a disease-specific questionnaire (AQUAREL). METHODS: The study enrolled 139 clinically stable patients (aged 59 +/- 14, 60.4% female) without any communication or cognitive impairments who went to the Pacemaker Laboratory for postimplantation follow-up. All patients were submitted to a standard protocol, which included an interview, functional class assessment, and QoL questionnaires. Additionally, 74 patients were requested to perform a 6-minute walk test. RESULTS: Female patients and patients without a partner displayed low QoL scores in both the SF-36 mental component summary and the AQUAREL arrhythmia domain. Chagas disease patients displayed low scores only in AQUAREL domains. All health-related QoL scores were low in patients with the worst, high-numbered functional classes, the strongest determinant of low QoL scores in multivariate analysis. CONCLUSION: In this first systematic study of QoL in a Latin American pacemaker population, AQUAREL detected well-impaired health-related QoL scores in different groups of patients, particularly in those with Chagas disease. Heart failure, evaluated by functional class, was the strongest predictor of low QoL in pacemaker patients.

Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life Inventory version 4.0 Generic Core Scales.

OBJECTIVES: To evaluate the reliability and validity of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL 4.0) Generic Core Scales and measure the quality of life of healthy children and adolescents and patients with rheumatic diseases. METHODS: We followed the translation methodology proposed by the developer of the original English version of the PedsQL 4.0. The instrument was administered by interviews in two groups: 240 apparently healthy children and adolescents from São Paulo (SP, Brazil) and 105 patients with chronic rheumatic diseases matched by age, as well as their respective parents or caregivers. The parent proxy-report was administered to the children's parents or caregivers separately on the same day. RESULTS: Cronbach's alpha values were between 0.6 and 0.9 for all dimensions, demonstrating adequate internal consistency. Patients with rheumatic diseases reported significantly lower PedsQL scores on all dimensions when compared to the healthy control group (p < 0.0001). Construct validity of the Brazilian Portuguese version of the PedsQL 4.0 was also confirmed. Parent proxy-report of patients with rheumatic diseases highly correlated with child self-report for physical functioning (r = 0.77, p < 0.001) and school functioning (r = 0.73, p < 0.001). Lower correlations were observed for emotional and social functioning (r = 0.40 and 0.59, respectively, p < 0.001). CONCLUSIONS: The tool demonstrated reliability, validity, and the administration was fast and easy. Quality of life in patients with rheumatic diseases was significantly lower than in the healthy control group, supporting the necessity of a comprehensive approach to rheumatic disease management, focused on the psychosocial dimensions.

Qualidade de vida de crianças e adolescentes de São Paulo: confiabilidade e validade da versão brasileira do questionário genérico Pediatric Quality of Life InventoryTM versão 4.0 / Quality of life of children and adolescents from São Paulo: reliability and validity of the Brazilian version of the Pediatric Quality of Life InventoryTM version 4.0 Generic Core Scales

OBJETIVOS: Avaliar a confiabilidade e a validade da versão brasileira do questionário genérico Pediatric Quality of Life InventoryTM (PedsQL TM 4.0) e mensurar a qualidade de vida de crianças e adolescentes saudáveis e de pacientes com doenças reumáticas. MÉTODOS: No processo de validação, seguimos a metodologia proposta pelos idealizadores da versão original em inglês do questionário PedsQL TM 4.0. O instrumento foi administrado por entrevista em dois grupos: 240 crianças e adolescentes aparentemente saudáveis de São Paulo (SP) e 105 pacientes com doenças reumáticas crônicas, pareados por idade, e aos respectivos pais ou responsáveis. O questionário foi aplicado nos cuidadores e nas crianças separadamente e no mesmo dia. RESULTADOS: Os valores do teste alfa de Cronbach situaram-se entre 0,6 e 0,9 para todas as dimensões, demonstrando uma consistência interna adequada. Os pacientes com doenças reumáticas apresentaram uma redução significativa na qualidade de vida quando comparados com as crianças saudáveis (p < 0,0001). A validade construída da versão brasileira do PedsQL TM 4.0 também foi comprovada. Observamos altos níveis de correlação entre os relatos dos cuidadores e dos pacientes na dimensão física (r = 0,77, p < 0,001) e escolar (r = 0,73, p < 0,001). A correlação foi mais baixa nas dimensões emocional e social (r = 0,40 e 0,59, respectivamente, p < 0,001). CONCLUSÕES: O questionário mostrou ser confiável, válido e de fácil e rápida aplicação. A qualidade de vida dos pacientes com doenças reumáticas foi mais baixa, o que reforça a necessidade de uma abordagem ampla aos pacientes com doenças crônicas, focada nos aspectos psicossociais.

OBJECTIVES: To evaluate the reliability and validity of the Brazilian version of the Pediatric Quality of Life InventoryTM (PedsQL TM 4.0) Generic Core Scales and measure the quality of life of healthy children and adolescents and patients with rheumatic diseases. METHODS: We followed the translation methodology proposed by the developer of the original English version of the PedsQL TM 4.0. The instrument was administered by interviews in two groups: 240 apparently healthy children and adolescents from São Paulo (SP, Brazil) and 105 patients with chronic rheumatic diseases, matched by age, as well as to their respective parents or caregivers. The parent proxy-report was administered to the children's parents or caregivers separately on the same day. RESULTS: Cronbach's alpha values were between 0.6 and 0.9 for all dimensions, demonstrating adequate internal consistency. Patients with rheumatic diseases reported significantly lower PedsQL TM scores on all dimensions when compared to the healthy control group (p < 0.0001). Construct validity of the Brazilian Portuguese version of the PedsQL TM 4.0 was also confirmed. Parent proxy-report of patients with rheumatic diseases highly correlated with child self-report for physical functioning (r = 0.77, p < 0.001) and school functioning (r = 0.73, p < 0.001). Lower correlations were observed for emotional and social functioning (r = 0.40 and 0.59, respectively, p < 0.001). CONCLUSIONS: The tool demonstrated reliability, validity and the administration was fast and easy. Quality of life of patients with rheumatic diseases was significantly lower than the healthy control group, supporting the necessity of a comprehensive approach to rheumatic disease management, focused on the psychosocial dimensions.

Systemic lupus erythematosus symptom checklist cross-cultural adaptation to Brazilian Portuguese language and reliability evaluation.

INTRODUCTION: Reliable and sensitive measurements are needed to evaluate quality of life QOL in patients with systemic lupus erythematosus SLE . No lupus-specific questionnaires are available in the Portuguese language. OBJECTIVES: This study describes the translation cultural adaptation and reliability testing of the Systemic Lupus Erythematosus Symptom Checklist questionnaire in Portuguese. PATIENTS AND METHODS: We evaluated 50 patients with SLE. A protocol was developed for translating and validating the SLE Symptom Checklist in accordance with the proposals in publications report on the methodology for translating questionnaires into foreign languages. RESULTS: With regard to cross-cultural adaptation some adaptations to people s culture had to be made without endangering the main objective of the questions in the original language. The correlation coefficients for internal consistency intraobserver reproducibility and interobserver reproducibility were 0.874 0.925 and 0.917 respectively. CONCLUSIONS: This questionnaire was shown to be reliable when applied to patients with SLE. Studies are currently being carried out to demonstrate its validity and sensitivity to changes.

Damage index assessment and quality of life in systemic lupus erythematosus patients (with long-term disease) in Northeastern Brazil.

Systemic lupus erythematosus (SLE) is an autoimmune disease that affects mainly young women. During the disease course, many organs and systems can suffer non-reversible damage that decreases both the patient's life span and also their quality of life. To determine the chronic damage and its correlation with quality of life, the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index was used in 63 patients who met the ACR criteria for SLE. Quality of life (QOL) was measured through the Medical Outcomes Survey short form 36 (SF-36), sociodemographic data were assessed using specific questionnaires, and disease activity was measured by the systemic lupus erythematosus disease activity index. Overall, 32% of the patients presented damage. Neuropsychiatric (25%) and vascular (20%) involvement were the most frequently related. Organic damages were associated with disease duration (p < 0.03). General health status and social aspects of quality of life were also associated with disease duration (p < 0.05 and p < 0.038, respectively). Socioeconomic status and disease activity were not associated with organic damages and quality of life. This study concluded that disease activity, cumulative damage, and quality of life had some influence in the overall view of lupus but those parameters are distinct domains of health status in SLE. Our analysis identified that disease duration had an important association with damage index and general health status.

Apoios de decisão: instrumento de auxílio à medicina baseada em preferências. Uma revisão conceitual / Decision aids: an instrument to eliciting patient preference. Current concepts

A necessidade da incorporação das preferências dos pacientes nas tomadas de decisão é uma realidade da assistência médica contemporânea, que caracteriza a medicina baseada em preferências. Os apoios de decisão são instrumentos que surgem como mecanismos de auxílio ao médico a expor riscos e benefícios de uma determinada tomada de decisão, sendo um mecanismo facilitador para a decisão compartilhada. Na literatura médica, particularmente em reumatologia, nota-se um emergente interesse pelo estudo das preferências dos pacientes nos ensaios clínicos. Este artigo de revisão tem por objetivo conceituar e caracterizar os apoios de decisão e suas implicações na pesquisa e prática clínicas, bem como ressaltar os princípios metodológicos necessários para a sua utilização e desenvolvimento.

Patient preferences in decision making is one reality of the medical assistance, which characterizes the value based medicine. The decision aids are instruments that appear as support mechanisms for the doctor to exercise this model of decision making. In medical literature, particularly in rheumatology, an emergent interest on patient's preference study is noticed in clinical trials. The aim of this article is to appraise and to characterize the decision aids and its implications in the practical research and clinics, as well as standing out the necessary methodology principles for its use and development.