Autonomía y dignidad en personas que viven con hemofilia / Autonomy and dignity in people living with hemophilia

INTRODUCCIÓN. La hemofilia es una condición rara hereditaria, crónica, potencialmente discapacitante e incapacitante, caracterizada por frecuentes sangrados debidos al déficit del factor VIII coagulante, Hemofilia A o del factor IX Hemofilia B. Las evaluaciones de calidad de vida en personas con hemofilia, basadas principalmente en el aspecto biológico, llevaron a considerar un importante enfoque bioético que evalúe la afectación de la autonomía y dignidad debida a la enfermedad. OBJETIVO. Registrar la percepción de la autonomía y dignidad de personas que viven con hemofilia. MATERIALES Y MÉTODOS. Estudio descriptivo transversal. Población de 92 y muestra de 28 varones mayores de 18 años con diagnóstico de hemofilia, atendidos en la Clínica de Coagulopatías Congénitas del Hospital de Especialidades Carlos Andrade Marín en el periodo marzo 2021 a agosto del 2021. Se excluyó a varones menores de 18 años atendidos en otras instituciones del Sistema Nacional de Salud. Estudio basado en el desarrollo de las capacidades centrales descritas por Martha Nussbaum. Se aplicó el test The Hemophilia Well Being Index que evaluó calidad de vida con relación al bienestar personal asociado a salud, y la herramienta Body Mapping que analizó en base al interpretativismo fenomenológico. RESULTADOS. El 100% de personas presentaron afectación en algún área de la vida investigada por el Hemophilia Well Being Index, que se confirma con las expresiones escritas y gráficas recopiladas por el Body Mapping. CONCLUSIÓN. La autonomía y dignidad se encuentran afectadas en las personas que viven con hemofilia, al igual que las capacidades centrales; es importante valorar cómo estos parámetros afectan la consecución de logros, lo que se debe considerar en estudios futuros.

INTRODUCTION. Hemophilia is a rare hereditary, chronic, potentially disabling and incapacitating condition, characterized by frequent bleeds due to deficiency of clotting factor VIII, Hemophilia A or factor IX Hemophilia B. Quality of life assessments in people with hemophilia, mainly based on the biological aspect, led to consider an important bioethical approach that evaluates the impairment of autonomy and dignity due to the disease. OBJECTIVE. To record the perception of autonomy and dignity of people living with hemophilia. MATERIALS AND METHODS. Cross-sectional descriptive study. Population of 92 and sample of 28 males over 18 years of age with a diagnosis of hemophilia, attended at the Congenital Coagulopathy Clinic of the Carlos Andrade Marin Specialty Hospital in the period March 2021 to August 2021. Males under 18 years of age attended in other institutions of the National Health System were excluded. The study was based on the development of the central capabilities described by Martha Nussbaum. The test The Hemophilia Well Being Index was applied, which evaluated quality of life in relation to personal wellbeing associated with health, and the tool Body Mapping which analyzed based on phenomenological interpretivism. RESULTS. 100% of people presented affectation in some area of life investigated by the Hemophilia Well Being Index, which is confirmed by the written and graphic expressions collected by the Body Mapping. CONCLUSION. Autonomy and dignity are affected in people living with hemophilia, as are core capacities; it is important to assess how these parameters affect achievement, which should be considered in future studies.

Potential role of MALT1 as a candidate biomarker of disease surveillance and treatment response prediction in inflammatory bowel disease patients.

BACKGROUND: Mucosa-associated lymphoid tissue lymphoma translocation protein 1 (MALT1) regulates adaptive and innate immune responses in several inflammatory disease. However, clinical involvement of MALT1 in inflammatory bowel disease (IBD) patients remains unclear. Hence, this study was intended to investigate the correlation of blood MALT1 with disease activity, inflammation indexes as well as treatment response of IBD patients. METHODS: Blood MALT1 expression in 100 IBD patients [including 25 active (A)-Crohn's disease (CD) patients, 25 remission (R)-CD patients, 25 A-ulcerative colitis (UC) patients, and 25 R-UC patients] and 25 health controls (HCs) was detected by reverse transcription-quantitative polymerase chain reaction; besides, serum tumor necrosis factor-alpha (TNF-α) and interleukin-17A (IL-17A) in IBD patients were detected by enzyme-linked immunosorbent assay. RESULTS: MALT1 was increased in A-UC patients than in R-UC patients (p = 0.038) and in HCs (p < 0.001), and also elevated in A-CD patients than in R-CD patients (p = 0.048) and in HCs (p < 0.001). MALT1 was positively related to C-reactive protein (CRP, p = 0.011), TNF-α (p = 0.036), IL-17A (p = 0.023), and Mayo score (p = 0.005) in A-UC patients, CRP (p = 0.017), erythrocyte sedimentation rate (p = 0.033), TNF-α (p = 0.004), and Crohn's disease activity index score (p = 0.028) in A-CD patients. But MALT1 was not correlated with either inflammation indexes or disease activity score in R-UC and R-CD patients. MALT1 gradually declined from baseline to W12 in A-UC and A-CD patients (both p < 0.001). Moreover, MALT1 at W4 (p = 0.031) and W12 (p = 0.003) in A-UC patients as well as MALT1 at W12 (p = 0.008) in A-CD patients associated with clinical response. CONCLUSION: MALT1 serves as a potential biomarker for disease surveillance and treatment response prediction of IBD patients.

Estratégias para enfrentamento da mortalidade precoce por doenças crônicas não transmissíveis / Strategies for coping with early mortality from non-communicable chronic diseases

As Doenças Crônicas Não Transmissíveis (DCNTs) tendem a ser de longa duração e são o resultado de uma combinação de fatores genéticos, fisiológicos, ambientais e comportamentais. Tais agravos matam 41 milhões de pessoas a cada ano, o equivalente a 74% de todas as mortes no mundo, principalmente mortes prematuras, além de acarretar a perda de qualidade de vida, limitações e incapacidades, constituindo a maior carga de morbimortalidade. Sendo assim, esta síntese de evidências traz alguns pontos do Plano de Ações Estratégicas para o Enfrentamento das Doenças Não Transmissíveis no Brasil (2011-2022), que tem o intuito de reduzir a carga de DCNTs e evitar mortes prematuras, além de promover o desenvolvimento e a implementação de políticas públicas efetivas, integradas, sustentáveis e baseadas em evidências para a prevenção e o controle das DCNTs e seus fatores de risco e fortalecer os serviços de saúde voltados às doenças crônicas

Chronic Noncommunicable Diseases (NCDs) tend to be of long duration and are the result of a combination of genetic, physiological, environmental and behavioral factors. Such diseases kill 41 million people each year, equivalent to 74% of all deaths in the world, mainly premature deaths, in addition to causing a loss of quality of life, limitations and disabilities, constituting the highest burden of morbidity and mortality. Therefore, this synthesis of evidence presents some points of the Strategic Action Plan for Combating Noncommunicable Diseases in Brazil (2011-2022), which aims to reduce the burden of NCDs and prevent premature deaths, in addition to promoting the development and the implementation of effective, integrated, sustainable and evidence-based public policies for the prevention and control of CNCDs and their risk factors and to strengthen health services aimed at chronic diseases

Mortality from chronic respiratory disease in Brazil: time trend and forecasts / Mortalidade por doença respiratória crônica no Brasil: tendência temporal e projeções

ABSTRACT OBJECTIVE To analyze the time trend of monthly mortality rates from chronic respiratory diseases in Brazil from 1996 to 2017, with forecasts for 2022, besides analyzing the possibility of achieving the goal of the Plano de Ações Estratégicas para o Enfrentamento das Doenças Crônicas Não Transmissíveis no Brasil (Strategic Action Plan to Tackle Chronic Noncommunicable Diseases in Brazil) from 2011 to 2022. METHODS This is an ecological study that uses data from Sistema de Informações sobre Mortalidade (SIM - Mortality Information System), Sistema de Informações Demográficas e Socioeconômicas (Demographic and Socioeconomic Information System) and Pesquisa Nacional por Amostra de Domicílios Contínua (PNAD Contínua - Continuous National Household Sample Survey). We established the age range between 30 and 69 years old and the evolution of the rates over time was made by autoregressive integrated moving average models in R statistical tool. RESULTS Premature mortality rates from chronic respiratory diseases are decreasing in Brazil as a whole, mostly in state capitals. There is also a trend to reach the Ministry of Health's goal in most of the country. For capitals that tend not to reach the goal, there is an association between mortality and social indicators, healthcare network and frequency of smoking. CONCLUSION This study intends to improve planning of the public health system for the control of chronic respiratory diseases.

RESUMO OBJETIVO Analisar a tendência temporal das taxas mensais de mortalidade por doenças respiratórias crônicas no Brasil de 1996 até 2017, com projeções para 2022, além de analisar a possibilidade de cumprimento da meta do Plano de Ações Estratégicas para o Enfrentamento das Doenças Crônicas Não Transmissíveis no Brasil de 2011 até 2022. MÉTODOS Trata-se de estudo ecológico que utiliza dados do Sistema de Informações sobre Mortalidade, do Sistema de Informações Demográficas e Socioeconômicas e da Pesquisa Nacional por Amostra de Domicílios Contínua. O recorte etário foi estabelecido entre 30 e 69 anos e a evolução das taxas no tempo foi feita por meio de modelos autorregressivos integrados de média móvel em plataforma estatística R. RESULTADOS As taxas de mortalidade precoce por doenças respiratórias crônicas apresentam-se decrescentes no Brasil como um todo e na maior parte das capitais, assim como, há tendência a atingir a meta do Ministério da Saúde na maior parte do país. Para capitais que tendem a não atingir a meta, verifica-se associação entre mortalidade e indicadores sociais, rede assistencial de saúde e frequência do tabagismo. CONCLUSÃO Pretende-se que o estudo possibilite um melhor planejamento do sistema público de saúde para o controle das doenças respiratórias crônicas.

Current treatment and surveillance modalities are not sufficient for advanced stage III colon cancer: Result from a multicenter cohort analysis.

OBJECTIVE: We conducted this multicenter cohort study to evaluate the current tumor-node-metastasis staging system and treatment modality by analyzing the survival outcomes of patient groups with stage III and IV colon cancer. PATIENTS AND METHODS: Stage III and IV colon cancer patients from the Surveillance, Epidemiology, and End Results (SEER) database (SEER cohort) and prospectively maintained Sun Yat-sen University (SYSU) cohort were included in this study. Kaplan-Meier method was used to estimate the cumulative rate of overall survival (OS) between patient groups, and the inverse probability weighting method was used to calculated age and sex-adjusted survival curves. The Cox regression model was used to identify the risk factors for OS. RESULTS: A total of 17,911 and 1135 stage III-IV cases were included in the SEER and SYSU cohorts, respectively. Among them, 1448 and 124 resectable stage IV cases underwent curative-intent treatment in the SEER and SYSU cohorts, respectively. The T4N2b group showed a significantly worse survival outcome compared with the M1a subset receiving curative-intent treatment (HR, 1.46; p < 0.001). This finding was validated in the SYSU cohort, in which the T4N2 group had a worse outcome than that of the M1 group receiving curative-intent treatment (HR, 2.44; p < 0.001). These findings were confirmed in the adjusted survival analysis. In the multivariate analysis, the right-side tumor, poor-undifferentiated tumor, and age over 60 years were identified as independent risk factors for T4N2b patients. Based on this multivariate model, the high-risk T4N2b subgroup had a worse survival outcome compared with resectable M1b patients (HR, 1.24; p = 0.03). CONCLUSION: By comparing stage III with stage IV colon cancer patients, we identified a subgroup of stage III patients at a higher risk of death than more advanced stages, implying that current cancer care modalities are not sufficient for these high-risk substages.

Chronic disease surveillance in Alberta's tomorrow project using administrative health data.

INTRODUCTION: Alberta's Tomorrow Project (ATP) is the largest population-based prospective cohort study of cancer and chronic diseases in Alberta, Canada. The ATP cohort data were primarily self-reported by participants on lifestyle behaviors and disease risk factors at the enrollment, which lacks sufficient and accurate data on chronic disease diagnosis for longer-term follow-up. OBJECTIVES: To characterize the occurrence rate and trend of chronic diseases in the ATP cohort by linking with administrative healthcare data. METHODS: A set of validated algorithms using ICD codes were applied to Alberta Health (AH) administrative data (October 2000-March 2018) linked to the ATP cohort to determine the prevalence and incidence of common chronic diseases. RESULTS: There were 52,770 ATP participants (51.2±9.4 years old at enrollment and 63.7% females) linked to the AH data with average follow-up of 10.1±4.4 years. In the ATP cohort, hypertension (18.5%), depression (18.1%), chronic pain (12.8%), osteoarthritis (10.1%) and cardiovascular diseases (8.7%) were the most prevalent chronic conditions. The incidence rates varied across diseases, with the highest rates for hypertension (22.1 per 1000 person-year), osteoarthritis (16.2 per 1000 person-year) and ischemic heart diseases (13.0 per 1000 person-year). All chronic conditions had increased prevalence over time (p < for trend tests), while incidence rates were relatively stable. The proportion of participants with two or more of these conditions (multi-morbidity) increased from 3.9% in 2001 to 40.3% in 2017. CONCLUSIONS: This study shows an increasing trend of chronic diseases in the ATP cohort, particularly related to cardiovascular diseases and multi-morbidity. Using administrative health data to monitor chronic diseases for large population-based prospective cohort studies is feasible in Alberta, and our approach could be further applied in a broader research area, including health services research, to enhance research capacity of these population-based studies in Canada.

Chronic Disease Surveillance Using Electronic Health Records From Health Centers in a Large Urban Setting.

OBJECTIVES: To assess the validity of electronic health records (EHRs) from a network of health centers for chronic disease surveillance among an underserved population in an urban setting. DESIGN: EHRs from a network of health centers were used to calculate the prevalence of chronic disease among adult and child patient populations during 2016. Two population-based surveys with local estimates of chronic disease prevalence were compared with the EHR prevalences. SETTING: A network of health centers that provides health care services to an underserved population in a large urban setting. PARTICIPANTS: A total of 187 292 patients who had at least 1 health care visit recorded in the Philadelphia health center network. MAIN OUTCOME MEASURE: Chronic disease indicator (CDI) prevalence of adult obesity, adult smoking, adult diabetes, adult hypertension, child obesity, and child asthma. Health center CDI proportions were compared with survey estimates. RESULTS: Overall consistency between the health center estimates and surveys varied by CDI. With the exception of childhood obesity, all health center CDI proportions fell within the 95% CI for at least 1 comparison survey estimate. Statistically significant differences were observed and varied by CDI. CONCLUSIONS: This analysis presents a novel use of existing EHR data to estimate chronic disease prevalence among underserved populations. With the increased use of EHRs in health centers, data from health center networks may supplement chronic disease surveillance efforts, if used appropriately.

Intestinal cancer in patients with Crohn's disease: A systematic review and meta-analysis.

BACKGROUND AND AIM: Although surveillance colonoscopy is recommended by several guidelines for Crohn's disease (CD), the evidence is insufficient to support the validity of this recommendation. Moreover, the efficacy of surveillance colonoscopy for anorectal cancer remains unclear. Therefore, we performed a systematic review of cancer in patients with CD before considering the proper surveillance methods. METHODS: We conducted a systematic review and meta-analysis examining the incidence of intestinal cancer and a literature review to clarify the characteristic features of cancer in CD. We performed the systematic literature review of studies published up to May 2019. RESULTS: Overall, 7344 patients were included in eight studies. The standardized incidence ratios (95% confidence intervals) of colorectal cancer (CRC) and small bowel cancer (SBC) were 2.08 (1.43-3.02) and 22.01 (9.10-53.25), respectively. The prevalence of CRC and SBC was 57/7344 (0.77%) and 17/7344 (0.23%), respectively, during a median follow-up of 12.55 years. Additionally, 54 studies reporting 208 anorectal cancer cases were identified. In patients with anorectal cancer, the prognosis for survival was 2.1 ± 2.3 years, and advanced cancer greater than stage T3 occurred in 46/74 patients (62.1%). Many more reports of anorectal cancer were published in Asia than in Western countries. CONCLUSION: Although we were unable to state a recommendation for surveillance for SBC, we should perform cancer surveillance for CRC in patients with CD. However, the characteristics of cancer may differ according to geography or race. We must establish proper and effective surveillance methods that are independently suitable to detect these differences.

Attending Training Courses on Barrett's Esophagus Improves Adherence to Guidelines: A Survey from the Italian Society of Digestive Endoscopy.

BACKGROUND: Little is known on practice patterns of endoscopists for the management of Barrett's esophagus (BE) over the last decade. AIMS: Our aim was to assess practice patterns of endoscopists for the diagnosis, surveillance and treatment of BE. METHODS: All members of the Italian Society of Digestive Endoscopy (SIED) were invited to participate to a questionnaire-based survey. The questionnaire included questions on demographic and professional characteristics, and on diagnosis and management strategies for BE. RESULTS: Of the 883 SIED members, 259 (31.1%) completed the questionnaire. Of these, 73% were males, 42.9% had > 50 years of age and 68.7% practiced in community hospitals. The majority (82.9%) of participants stated to use the Prague classification; however 34.5% did not use the top of gastric folds to identify the gastro-esophageal junction (GEJ); only 51.4% used advanced endoscopy imaging routinely. Almost all respondents practiced endoscopic surveillance for non-dysplastic BE, but 43.7% performed eradication in selected cases and 30% practiced surveillance every 1-2 years. The majority of endoscopists managed low-grade dysplasia with surveillance (79.1%) and high-grade dysplasia with ablation (77.1%). Attending a training course on BE in the previous 5 years was significantly associated with the use of the Prague classification (OR 4.8, 95% CI 1.9-12.1), the top of gastric folds as landmark for the GEJ (OR 2.45, 95% CI 1.27-4.74) and advanced imaging endoscopic techniques (OR 3.33, 95% CI 1.53-7.29). CONCLUSIONS: Practice patterns for management of BE among endoscopists are variable. Attending training courses on BE improves adherence to guidelines.

Practice patterns in post-treatment surveillance in patients with primary epithelial ovarian cancer.

BACKGROUND: The Society of Gynecologic Oncology created guidelines to standardize cost-effective clinical surveillance for detection of recurrence of gynecologic cancers. OBJECTIVE: To determine practice patterns for surveillance of primary ovarian cancer after complete response to therapy and to identify the percentage of clinicians who follow the surveillance guidelines endorsed by the Society of Gynecologic Oncology. METHODS: A single-institution retrospective cohort study was conducted including patients with epithelial ovarian cancer with a complete response to primary therapy between January 2012 and December 2016. Patients were excluded if they were participating in clinical trials that required routine imaging. Data on surveillance and recurrence were collected. Descriptive statistics as well as Fisher's exact test and chi-square test were performed due to the exploratory nature of the study. RESULTS: A total of 184 patients met the inclusion criteria. Median follow-up for the cohort was 37 months (range 6-80). Surveillance was completed in compliance with Society of Gynecologic Oncology guidelines in 78% of patients. Of 39 visits that were non-compliant, 44% (17) were patient initiated (scheduling conflict, missed appointment), 15% (6) were due to the provider intentionally scheduling alternative follow-up, while 41% (16) were off schedule due to problem visits (patient complaint of symptoms). Patients with early-stage cancers were more likely than advanced-stage patients to be non-compliant (33% vs 15%, p=0.006). Patients with non-serous histologies had a higher frequency of non-compliance (31% vs 16%, p=0.035). When stratified by early versus advanced stage, there was no difference in progression-free survival or overall survival based on compliance. CONCLUSIONS: Overall, there was a relatively high rate of compliance with Society of Gynecologic Oncology surveillance guidelines for patients with epithelial ovarian cancer. Patients with non-serous histologies and patients with early-stage disease had a higher rate of non-compliance, and these patients may represent special groups that would benefit from additional survivorship education.

Dysplastic Progression to Adenocarcinoma is Equivalent in Ulcerative Colitis and Crohn's Disease.

BACKGROUND: We sought to determine the rate of progression from dysplasia to adenocarcinoma in ulcerative colitis [UC] vs Crohn's diseases [CD] and describe the risk factors unique to each. METHODS: All adult patients [≥18 years] with a known diagnosis of either UC or CD who underwent a surveillance colonoscopy between January 1, 2010 and January 1, 2020 were included. RESULTS: A total of 23 751 surveillance colonoscopies were performed among 12 289 patients between January 1, 2010 and January 1, 2020; 6909 [56.2%] had a diagnosis of CD and 5380 [43.8%] had a diagnosis of UC. There were a total of 668 patients [5.4%] with low-grade dysplasia [LGD], 76 patients [0.62%] with high-grade dysplasia [HGD], and 68 patients [0.55%] with adenocarcinoma in the series; the majority of the dysplastic events were located in the right colon. Significantly more UC patients had a dysplastic event, but the rate of LGD and HGD dysplasia progression to adenocarcinoma was not significantly different in CD or UC [p = 0.682 and p = 1.0, respectively]. There was no significant difference in the rate of progression from LGD/HGD to adenocarcinoma based on random biopsies vs targeted biopsies of visible lesions [p = 0.37]. However, the rate of progression from LGD vs HGD to adenocarcinoma was significantly greater for HGD [p < 0.001]. CONCLUSION: While more UC patients were found to have neoplasia on colonoscopy, the rate of progression from LGD and HGD to adenocarcinoma was equivalent in UC and CD, suggesting that endoscopic surveillance strategies can remain consistent for all IBD patients.

Early disease surveillance in young children with cystic fibrosis: A qualitative analysis of parent experiences.

BACKGROUND: Sensitive measures of early lung disease are being integrated into therapeutic trials and clinical practice in cystic fibrosis (CF). The impact of early disease surveillance (EDS) using these novel and often intensive techniques on young children and their families is not well researched. METHODS: The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) has operated a combined clinical and research early disease surveillance program, based around annual chest CT scan, bronchoscopy and lung function from newborn screening diagnosis until age 6 years, for over two-decades. To explore parental experiences of EDS in their child, a qualitative study was conducted using audio-recorded, semi-structured interviews in n=46 mothers and n=21 fathers of children (aged 3-months to six years) attending CF centres in Perth and Melbourne, Australia. Themes were developed iteratively using thematic analysis and assessed for validity and confirmability. RESULTS: Parents' experiences were positive overall; affording a sense of control over CF, disease knowledge, and belief that EDS was in the best interests of their child. Challenges included poor understanding about EDS measures leading to anxiety and distress, self-blame surrounding adverse findings, and emotional burden of surveillance visits. Tailored information regarding the practical and psychosocial aspects of EDS were endorsed. CONCLUSION: While experiences were generally positive there is need for information and psychosocial support for parents to mitigate anxiety and develop positive coping strategies surrounding surveillance procedures and results. Managing expectations regarding risks and benefits of disease surveillance in clinical and research settings are important aspects of care.

Validación de instrumento educativo para la promoción de la salud de las quilombolas brasileñas de 2016 al 2018 / Validation of the educational instrument for the promotion of the health of Brazilian Quilombolas communities from 2016 to 2018

Resumen: Objetivo: Describir el proceso de construcción y validación del instrumento educación, el cual tiene un diseño posintervención, para la promoción de la salud y vigilancia de enfermedades crónicas no transmisibles (ECNT) en comunidades quilombolas brasileñas. Metodología: Se trata de un estudio metodológico para validar un instrumento, que mezcla investigación cuantitativa y cualitativa, realizado en las comunidades quilombolas en el municipio de Capela/Sergipe, Brasil. Como primera etapa de la construcción del instrumento, se identificó el perfil social y clínico, al mismo tiempo que se ejecutaron las acciones de educación sanitaria sobre la prevención de enfermedades y estilos de vida saludables. Esto tenía el fin de identificar los déficits de información, fragancias y potencialidades en el entorno de las quilombolas. Para la validación del instrumento educativo, se calculó el índice de validez del contenido. Resultados: El índice de validez del contenido se obtuvo en el orden de 0.94. Las quilombolas presentan varias debilidades para el desarrollo de la ECNT, pero las potencialidades pueden fortalecerse y trabajarse en las oportunidades, destacando la importancia de las estrategias educativas para la prevención de problemas de salud. Conclusión: El proceso de validación mostró que el folleto se consideraba válido para la educación y la salud en las comunidades quilombolas, porque es atractivo, confiable y fácil de entender para este grupo de población. Se concluye que el objetivo propuesto se logró, ya que el folleto educativo titulado "Aprenda cómo cuidar su salud" fue validado para el diseño y el contenido con especialistas y la facilidad de comprensión con los líderes de las comunidades quilombolas.

Abstract: Objective: To describe the process of construction and validation of an educational instrument, with a post-intervention design, for health promotion and surveillance of non-communicable chronic diseases (CNCDS) in Brazilian Quilombola communities. Methodology: This is a methodological study to validate an instrument with a mixed study of quantitative and qualitative research, carried out in Quilombolas communities in the municipality of Capela/Sergipe, state Brazil. As the first stage of the construction of the educational instrument, the social and clinical profile was identified, concomitantly with health education actions on the prevention of healthy diseases and lifestyles, in order to identify the information deficits, Fragilities and potentialities in the Quilombola environment. For the validation of the educational instrument, the content validity index was calculated. Results: The content validity index was obtained in the order of 0.94. The Quilombolas present several weaknesses for the development of CNCDS, however the potentialities can be strengthened and the opportunities worked, highlighting the importance of educational strategies for the prevention of health problems. Conclusion: The validation process showed that the booklet was considered valid for education and health in Quilombola communities, because it is attractive, reliable and easy to understand for this population group. It is concluded that the proposed objective was achieved, the educational booklet titled "Learn how to care for your health" was validated for layout and content with specialists, and the ease of understanding with community leaders Quilombolas.

Assessment of a Deep Learning Model to Predict Hepatocellular Carcinoma in Patients With Hepatitis C Cirrhosis.

Importance: Deep learning, a family of machine learning models that use artificial neural networks, has achieved great success at predicting outcomes in nonmedical domains. Objective: To examine whether deep learning recurrent neural network (RNN) models that use raw longitudinal data extracted directly from electronic health records outperform conventional regression models in predicting the risk of developing hepatocellular carcinoma (HCC). Design, Setting, and Participants: This prognostic study included 48 151 patients with hepatitis C virus (HCV)-related cirrhosis in the national Veterans Health Administration who had at least 3 years of follow-up after the diagnosis of cirrhosis. Patients were identified by having at least 1 positive HCV RNA test between January 1, 2000, to January 1, 2016, and were followed up from the diagnosis of cirrhosis to January 1, 2019, for the development of incident HCC. A total of 3 models predicting HCC during a 3-year period were developed and compared, as follows: (1) logistic regression (LR) with cross-sectional inputs (cross-sectional LR); (2) LR with longitudinal inputs (longitudinal LR); and (3) RNN with longitudinal inputs. Data analysis was conducted from April 2018 to August 2020. Exposures: Development of HCC. Main Outcomes and Measures: Area under the receiver operating characteristic curve, area under the precision-recall curve, and Brier score. Results: During a mean (SD) follow-up of 11.6 (5.0) years, 10 741 of 48 151 patients (22.3%) developed HCC (annual incidence, 3.1%), and a total of 52 983 samples (51 948 [98.0%] from men) were collected. Patients who developed HCC within 3 years were older than patients who did not (mean [SD] age, 58.2 [6.6] years vs 56.9 [6.9] years). RNN models had superior mean (SD) area under the receiver operating characteristic curve (0.759 [0.009]) and mean (SD) Brier score (0.136 [0.003]) than cross-sectional LR (0.689 [0.009] and 0.149 [0.003], respectively) and longitudinal LR (0.682 [0.007] and 0.150 [0.003], respectively) models. Using the RNN model, the samples with the mean (SD) highest 51% (1.5%) of HCC risk, in which 80% of all HCCs occurred, or the mean (SD) highest 66% (1.2%) of HCC risk, in which 90% of all HCCs occurred, could potentially be targeted. Among samples from patients who achieved sustained virologic response, the performance of the RNN models was even better (mean [SD] area under receiver operating characteristic curve, 0.806 [0.025]; mean [SD] Brier score, 0.117 [0.007]). Conclusions and Relevance: In this study, deep learning RNN models outperformed conventional LR models, suggesting that RNN models could be used to identify patients with HCV-related cirrhosis with a high risk of developing HCC for risk-based HCC outreach and surveillance strategies.

Análise descritiva do comportamento de adultos na participação de atividade física na cidade de Salvador, Bahia, Brasil / Descriptive analysis of behavior of adults in the participation of physical activity in Salvador, state of Bahia, Brazil / Análisis descriptivo de comportamiento de adultos en la participación en actividad física en la ciudad de Salvador, Bahia, Brasil

O objetivo deste estudo é fornecer informações sociodemográficas e de características individuais de adultos, relacionados à participação de atividade física (AF) da população residente na cidade de Salvador, Bahia, na expectativa de gerar informações que auxiliem a elaboração de políticas públicas direcionadas à promoção da saúde da população soteropolitana. Foram analisados dados de 2.030 adultos (≥ 18 anos de idade) de ambos os sexos, participantes do sistema de Vigilância de Fatores de Risco e Proteção para Doenças Crônicas por Inquérito Telefônico (Vigitel) de 2018. Os homens estavam fisicamente mais ativos do que as mulheres no lazer e no trabalho, enquanto as mulheres estavam mais ativas nas atividades domiciliares. Ser solteiro e/ou divorciado e ter maior escolaridade parece favorecer a participação em AF. Entre os cinco tipos AF recreativa mais praticados, a caminhada foi a atividade mais prevalente em ambos os sexos, com 24,7% e 21,3% da população feminina e masculina, respectivamente, seguida de musculação (7,2%), ginástica geral (5,0%), futebol/futsal (4,0%) e corrida (3,0%). A participação de musculação, futebol/futsal e corrida foi mais frequente na parcela masculina da população, enquanto a participação de ginástica geral foi alavancada pela atuação feminina. A persistência dos estereótipos de gênero pode explicar, em partes, a diversidade e a prevalência em certas modalidades de AF entre homens e mulheres. A continuidade e a periodicidade do monitoramento da AF pelo Vigitel permitirão o acompanhamento das tendências comportamentais da população de Salvador em relação à participação de AF, enquanto estudos futuros, com metodologias apropriadas, poderão explicar as diferenças dos padrões de AF entre os sexos.

This study seeks to provide demographic and personal behavior information about the participation in physical activity (PA) in the municipality of Salvador, state of Bahia, Brazil population, hoping to expand directed support to that population's health using PA promotion. Data from 2,030 adults (≥ 18 years old) of both sexes that participate in the Risk and Protection Factors for Chronic Disease Surveillance System by Telephone Survey (Vigitel) in the year 2018 were analyzed, including sociodemographic and individual behavior variables related to participation in PA. Men were more physically active than women at leisure and at work, and women were more active than men at home (house cleaning). Being single and/or divorced and having a high level of education seems to favor the practice of PA. Among the five most practiced PA modalities, walking was preferred by 23.5% of the population, followed by weight training (7.2%), general gymnastics (5.0%), soccer/futsal (4.0%) and running (3.0%). Walking was the most practiced by both sexes, with a prevalence of 24.7% and 21.3% in the female and male population, respectively. The practice of weight training, soccer/futsal and running was more frequent in the male segment, whereas general gymnastics was leveraged by female participation. The persistence of gender stereotypes could explain, in part, the diversity and prevalence in certain modalities between men and women. The continuity and periodicity of PA monitoring by Vigitel will allow the monitoring of the behavioral trends of the population of Salvador regarding the participation in PA, and future studies with appropriate methodologies may explain the differences in PA patterns between genders.

El objetivo de este estudio es brindar información sociodemográfica y características individuales de los adultos, relacionadas con la participación en actividad física (AF) de la población residente en la ciudad de Salvador (Bahia, Brasil), para generar datos que servirán en la elaboración de políticas públicas orientadas a promover la salud de la población de Salvador. Se analizaron datos de 2.030 adultos (≥ 18 años de edad) de ambos sexos, participantes del Sistema de Vigilancia de Factores de Riesgo y Protección para Enfermedades Crónicas por Encuesta Telefónica (Vigitel) de 2018. Los varones eran físicamente más activos que las mujeres en el tiempo libre y en el trabajo, mientras que las mujeres eran más activas en las actividades del hogar. Ser soltero y/o divorciado y tener estudios superiores parece favorecer la participación en AF. Entre los cinco tipos de AF recreativa más practicada, caminar fue la más prevalente para ambos sexos, con un 24,7% y un 21,3% en la población femenina y masculina, respectivamente, seguido del entrenamiento con pesas (7,2%), gimnasia general (5,0%), fútbol/futsal (4,0%) y carreras (3,0%). El entrenamiento con pesas, el fútbol/futsal y la carrera fueron las más frecuentes entre los varones, mientras que la gimnasia general fue más practicada por las mujeres. La persistencia de estereotipos de género podría explicar, en parte, la diversidad y prevalencia de ciertos tipos de AF entre varones y mujeres. La continuidad y la periodicidad del seguimiento de AF por Vigitel permitirán monitorear las tendencias de comportamiento de la población de Salvador en relación a la participación en AF, y estudios futuros con metodologías adecuadas pueden explicar las diferencias en los patrones de AF entre géneros.

Factors affecting the rates of adherence to surveillance recommendations for incidental pancreatic cystic lesions in a large urban safety net hospital.

BACKGROUND: Pancreatic cystic lesions (PCLs) are a heterogenous group of lesions with varying degrees of malignant potential. PCLs are often incidentally detected on imaging. Management for patients without an immediate indication for resection or tissue sampling entails radiographic surveillance to assess for features concerning for malignant transformation. This study aims to determine the rates of adherence to surveillance recommendations for incidental PCLs, and identify factors associated with adherence or loss of follow-up. METHODS: We conducted a single-centre retrospective study of patients at a tertiary safety net hospital with incidentally discovered asymptomatic PCLs. Follow-up was defined as having undergone repeat imaging as recommended in the radiology report. Data were analysed using logistic regression. RESULTS: Within our cohort (n=172), 123 (71.5%) subjects completed follow-up imaging. Attending a gastroenterology appointment was most strongly associated with completing follow-up for PCLs and remained significant (p=0.001) in a multivariate logistic regression model. Subjects without a documented primary care provider were less likely to have follow-up (p=0.028). Larger cyst size was associated with completion of follow-up in univariate only (p=0.067). CONCLUSION: We found that follow-up of an incidentally discovered PCLs was completed in the majority of our subjects. Incomplete follow-up for PCLs occurred in up to one in three to four patients in our cohort. Access to primary care and utilisation of subspecialty gastroenterology care are associated with completion of follow-up for PCLs. If validated, our findings can guide potential interventions to improve follow-up rates for PCLs.

Prospective spine at risk program for prevalence of intracanal spine lesions in pediatric hereditary multiple osteochondromas.

STUDY DESIGN: Retrospective cohort study OBJECTIVES: To determine prevalence of hereditary multiple osteochondromas (HMO) and utility of MRI surveillance in a prospective Spine at Risk (SAR) program. Unidentified intraspinal exostoses in HMO can lead to neurologic injury in children during sedated procedures but no MRI guidelines exist. We sought to determine the prevalence and age of intraspinal exostoses from MRIs, and indications for MRI surveillance. METHODS: Retrospective review was performed of pediatric HMO patients who underwent total spine MRIs at a single institution after a prospective SAR program was instituted. Charts were reviewed for MRI indication and findings, symptoms, surgery, and location of other exostoses. Fisher's exact test was used to compare categorical variables and T test to compare continuous variables. Predictive value of pelvic/rib exostoses was calculated for intraspinal lesions. RESULTS: Forty-three patients with HMO underwent total spine MRIs with average age of 11.5 years. Fifteen (35%) patients had exostoses on vertebral column, eight (19%) had intra-canal spinal exostoses. Higher prevalence of spine lesions occurred in symptomatic patients than asymptomatic (any spinal lesion: 73% prevalence in symptomatic vs 22% in asymptomatic, p < 0.005; intra-canal spinal lesion: 46% vs 9%, p < 0.05). Only two of the 11 'symptomatic presentations' could be attributable to intracanal spinal exostoses. Only one intra-canal exostosis found on asymptomatic surveillance was treated surgically. Presence of pelvic or rib exostoses were not strongly predictive of intra-canal lesions (23% PPV, 85% NPV, 63% sensitivity, 51% specificity). CONCLUSIONS: Even with the presence of intra-canal exostoses, true symptomatic lesions are rare. Rib and pelvic lesions were not predictive of intra-canal lesions in our population. We recommend obtaining MRIs at time of preoperative evaluation in asymptomatic children old enough to not need sedation, or in patients with true neurologic symptoms to prevent unnecessary sedation of younger children for surveillance MRI. LEVEL OF EVIDENCE: III.

Systematic identification of critically ill and dying patients in primary care using the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE).

Objective: The systematic identification of patients who are at risk of deteriorating and dying is the prerequisite for the provision of palliative care (PC). This study aimed to investigate the feasibility and practicability of the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for the systematic identification of these patients in general practice. Methods: In the beginning of 2017, twelve general practitioners (GPs; female n=6) were invited to take part in the study. GPs were asked to apply the SPICT-DE in everyday practice over a period of two months in patients with chronic progressive diseases. Six months after initial assessment, a follow-up survey revealed how the clinical situation of the initially identified patients had changed and which PC actions had been initiated by GPs. In addition, GPs gave feedback on the practicability of SPICT-DE in daily routine. Results: 10 of the 12 GPs (female n=5, median age 46 years, range 38-68) participated in both the two-month assessment period and the follow-up survey. A total of 79 patients (female n=40, median age 79 years, range 44-94) was assessed with the SPICT-DE. Main diagnoses were predominately of cardio-vascular (n=28) or oncological (n=26) origin. Follow-up after six months showed that 38 patients (48%) went through at least one crisis during the course of disease and almost one third (n=26) had died. The majority of GPs (n=7) considered the SPICT-DE to be practical in daily routine and helpful in identifying patients who might benefit from PC. Seven GPs indicated that they would use the SPICT-DE as part of everyday practice. Conclusions: The SPICT-DE seems to be a practical tool supporting the systematic identification of critically ill and dying patients in general practice.

Screening for Hepatocellular Carcinoma in HIV-Infected Patients: Current Evidence and Controversies.

PURPOSE OF REVIEW: This review aims to summarize evidence regarding hepatocellular carcinoma (HCC) screening in the specific context of HIV infection and discuss areas of uncertainty. RECENT FINDINGS: It has not been definitely established if HCC incidence in HIV/HCV-coinfected patients with cirrhosis is above the 1.5%/year threshold that makes screening cost-effective. Outside cirrhosis or HBV infection, available data do not support surveillance. The performance of currently recommended ultrasound (US) screening strategy is poor in HIV-infected patients, as rates of early-stage HCC detection are low. Magnetic resonance imaging-based surveillance strategies or liquid biopsy are innovative approaches that should be specifically tested in this setting. HIV-infected patients with cirrhosis are at risk of HCC. US surveillance identifies patients with early-stage HCC who will benefit of curative therapies, although the quality of the evidence supporting screening remains limited. The HIV population should be a priority group to assess and validate new surveillance strategies.

A Review of Investigations for Patients With Tuberous Sclerosis Complex Who Were Referred to the Tuberous Sclerosis Clinic at The Hospital for Sick Children: Identifying Gaps in Surveillance.

OBJECTIVE: As a newly established tuberous sclerosis clinic (TSC) clinic at The Hospital for Sick Children, we reviewed our referrals to determine if children with TSC received appropriate surveillance as advised by the 2012 International Tuberous Sclerosis Complex Consensus Recommendations. METHODS: We completed a retrospective review of all patients seen in the TSC clinic from January 2016 to December 2017 to determine if children referred to the clinic had appropriate surveillance as suggested by the Tuberous Sclerosis Complex Consensus Recommendations. RESULTS: Ninety patients were seen in the TSC clinic. The median age at first visit was 9.9 years, and 47 were males. Seventy-six percent had undergone genetic testing before the initial clinic visit; however, genetic counseling was completed in only 66%. Brain magnetic resonance imaging was completed in 94%, abdominal imaging was completed in 91%, and an echocardiography and electrocardiography in 88% and 83%, respectively. In addition, dermatology and ophthalmology evaluations were completed in 78% and 91%, respectively. Assessment of TSC-associated neuropsychiatric disorders (TAND) was only completed in 4% of the patients. CONCLUSIONS: Systems surveillance was completed in the majority before the first TSC clinic visit. However, TSC-associated neuropsychiatric disorder screening was completed in few cases. This suggests that referring physicians may not be familiar with the neuropsychiatric manifestations of TSC and that there may be underdiagnosed or undertreated illness. Future emphasis should be placed on educating all practitioners to assess and treat tuberous sclerosis complex-associated neuropsychiatric disorder in tuberous sclerosis complex.