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Beatriz Mac Dowell Soares,1,2 Luiz Alberto Simeoni,2 Karlo Jozefo Quadros de Almeida,1 Jaqueline Lima de Souza,1 Aline Mizusaki Imoto,1,3 Melina Swain Braverman,3 Lucas Barbosa Bezerra,1 Alexandre Jorge Teixeira Ribeiro,1,3 Ana Maria Costa,1 Fábio Ferreira Amorim1,2 1School of Medicine, Higher Education School of Health Sciences (ESCS), Faculdade de Ciências de Saúde Campos Univ, Brasília, Federal District, Brazil; 2Faculty of Health Sciences, University of Brasilia (UnB) – Brasília, Faculdade de Ciências de Saúde Campos Univ, Brasília, Federal District, Brazil; 3Brasília Hemocentro Foundation (FHB), SMHN Conjunto A Bloco 3, Brasília, Federal District, BrazilCorrespondence: Beatriz Mac Dowell SoaresSchool of Medicine, Escola Superior de Ciências da Saúde (ESCS), SMHN Conjunto A Bloco 01 Edifício Fepecs – Asa Norte, Brasília – DF, Brasília CEP: 70710-907, Federal District, Brazil, Tel +55 61999836446Email biamacdowell@uol.com.brObjective: Hemophilia is associated with a high prevalence of disabilities and mortality. This finding can be influenced by patient compliance with the treatment protocol. This study aims to identify compliance with a treatment protocol in adult patients with hemophilia and to evaluate the factors associated with and the impact on mortality of noncompliance with a hemophilia treatment protocol.Methods: This was a cross-sectional study that was performed between June 2015 and May 2016, followed by a cohort to evaluate mortality until July 2019 that included all adult patients with hemophilia registered in the Federal District, Brazil.Results: Among 138 patients enrolled in the study, 35 patients were compliant with all items of the treatment protocol (25.4%). Regarding each item, compliance with the medical consultations was 71.0% (98/138); the clotting factor regimen was 65.9% (91/138); and the serological tests were 51.4% (71/138). The mortality was 7.2% (10/138). Noncompliance with any aspect of the protocol was associated with mortality: medical consultations (p< 0.001), clotting factor regimen (p=0.013), and serological tests (p=0.006). All deaths occurred in those who did not comply with the protocol, and the majority were due to bleeding. Patients who were noncompliant with all protocol items showed the highest mortality (50.0%, 5/10). Treatment at the hemophilia treatment center (OR: 2.388; 95% CI: 1.052– 5.418, p=0.037) was positively and independently associated with compliance with the protocol in multivariate analysis.Conclusion: Noncompliance with the treatment protocol was high. Treatment at a hemophilia treatment center was positively and independently associated with compliance with the protocol, which reinforces the importance of comprehensive care by a multidisciplinary team.Keywords: hemophilia A, hemophilia B, patient compliance, medication adherence, treatment adherence and compliance, clinical protocols

Introduction Hemophilic arthropathy affects people with hemophilia (PwH) and causes joint dysfunction and disability. Brazil has a unique situation and implemented policies to improve health care for PwH. The aim of this study was to evaluate the Functional Independence Score in Hemophilia (FISH), Hemophilia Joint Health Score (HJHS), and associated factors among adult PwH attending a Hemophilia Comprehensive Care Center in Brazil. Methods A post hoc analysis was conducted, including 31 patients who had submitted to a physical evaluation during a previously published cross-sectional study performed from June 2015 to May 2016 at the Brasília Blood Center Foundation, Brazil. Results The mean age was 30.8±9.4 years, and 80.6% had severe hemophilia. FISH was 27.0±3.8, and HJHS 18.0±10.8. The ankle was the most often affected joint (25/31, 80.6%). There were significant correlations between FISH and HJHS scores and the Hemophilia Quality of Life Questionnaire for Adults. Patients with severe hemophilia ( P = 0.029) and PwH aged ≥ 30 years ( P = 0.049) had lower FISH scores. Monthly household income > 2 Brazilian minimum wages was independently associated with improved HJHS ( P = 0.033). The factors simultaneously associated with better HJHS and FISH were age < 30 years ( P = 0.021) and monthly household income < 2 minimum wages ( P = 0.013). Conclusion FISH and HJHS showed favorable scores despite being performed in a country with unfavorable socioeconomic conditions. In addition to hemophilia severity and age, monthly household income was independently associated with functional and articular state of PwH. The results highlight the importance of the free provision of coagulation factors in Brazil., Competing Interests: Conflicts of InterestNone declared

Objective: This study aimed to analyze the compliance with the assistance protocol and factors associated with the judicialization of coagulation factors in severe hemophilia patients., Methods: A retrospective, cross-sectional study was conducted from June 2015 to May 2016 in adults with severe hemophilia in the Federal District, Brazil using data from their medical records and the Hemovida Web Coagulopathies System., Results: One-hundred and three patients from Federal District, the capital of Brazil, were included in the study. The mean age of the patients was 34.6±10.1. Ninety-three received prophylactic treatment (90.3%) and 53 received recombinant coagulation factors (51.7%). Judicialization occurred in 21 cases (20.4%), 13 of whom disagreed with the assistance protocol (12.6%). In the univariate analysis, an association was observed between reduced judicialization and treatment (4.8 vs. 47.6%; p<0.001) in the hemophilia treatment center and an increase that was associated with use of the recombinant coagulation factor in disagreement with the protocol (38.1 vs. 6.1%; p<0.001). In the multivariate analysis, the odds ratio for judicialization was 0.081 (95% confidence interval [CI] 0.010-0.055) for treatment at the hemophilia treatment center and 5.067 (95%CI 1.392-18.446) for the use of recombinant coagulation factor not in compliance with the protocol. More inhibitor development in judicialized patients (33.3 vs. 4.9%; p<0.001) was found., Conclusions: The effectiveness of judicialization should be questioned, especially regarding coagulation factor prescriptions that are not in compliance with the protocol. The expense resulting from judicialization has not shown any benefit, and an even greater development of inhibitors during treatment in judicialized patients was found.

Study Objectives: To determine the prevalence of obstructive sleep apnea (OSA) in adults with Down syndrome (DS), to investigate factors related to OSA severity and to identify which sleep questionnaire is the most appropriate for the screening of OSA in this population., Methods: Cross-sectional study that consecutively included 60 adults with DS. All patients underwent type III polysomnography and clinical and laboratory data were collected; sleep assessment questionnaires were applied. Multiple linear regression models evaluated the associations between OSA severity (measured by the respiratory event index-REI) and clinical and laboratory data and sleep questionnaires (Epworth Sleepiness Scale, Pittsburgh Sleep Quality Index, BERLIN and STOP-Bang questionnaires)., Results: Results show that 60 (100%) adults with DS had OSA, with moderate-severe OSA identified in 49 (81.6%). At the multivariate linear regression, REI significantly correlated with hematocrit levels, BMI and STOP-Bang questionnaire (SBQ) results (P <0.001). The positive STOP-Bang ≥3 points) showed 100% of sensitivity (95%CI: 92.75-100%), 45.45% of specificity (95%CI: 16.75-76.62), positive predictive value of 89.09% (95%CI: 82.64-93.34%), negative predictive value of 100%, accuracy of 90% (95%CI: 79.49-96.24%) and OR of 24.29., Conclusions: Adults with DS have a very high prevalence of OSA. Hematocrit levels, BMI and SBQ showed a strong correlation with OSA severity. The SBQ performed well in identifying moderate to severe OSA in this population. Considered together, these results point to the need to perform OSA screening in all adults with DS, and STOP-Bang may play a role in this screening., Competing Interests: The authors have declared that no competing interests exist.

Objective: Exploring the use of forecasting models and simulation tools to estimate demand and reduce the waiting time of patients in Emergency Departments (EDs)., Methods: The analysis was based on data collected in May 2013 in the ED of Recanto das Emas, Federal District, Brasil, which uses a Manchester Triage System. A total of 100 consecutive patients were included: 70 yellow (70%) and 30 green (30%). Flow patterns, observed waiting time, and inter-arrival times of patients were collected. Process maps, demand, and capacity data were used to build a simulation, which was calibrated against the observed flow times. What-if analysis was conducted to reduce waiting times., Results: Green and yellow patient arrival-time patterns were similar, but inter-arrival times were 5 and 38 minutes, respectively. Wait-time was 14 minutes for yellow patients, and 4 hours for green patients. The physician staff comprised four doctors per shift. A simulation predicted that allocating one more doctor per shift would reduce wait-time to 2.5 hours for green patients, with a small impact in yellow patients' wait-time. Maintaining four doctors and allocating one doctor exclusively for green patients would reduce the waiting time to 1.5 hours for green patients and increase it in 15 minutes for yellow patients. The best simulation scenario employed five doctors per shift, with two doctors exclusively for green patients., Conclusion: Waiting times can be reduced by balancing the allocation of doctors to green and yellow patients and matching the availability of doctors to forecasted demand patterns. Simulations of EDs' can be used to generate and test solutions to decrease overcrowding.

Objective: To evaluate the active health Ombudsman service as an instrument to evaluate the quality of delivery and birth care in the Cegonha Network of the Federal District of Brazil., Methods: This is a cross-sectional study of the telephone survey type carried out with 1,007 mothers with deliveries between October 15, 2013 and November 19, 2013 in the twelve public maternity hospitals that make up the Cegonha Network of the Federal District of Brazil. The instrument has 25 multiple choice or Likert scale questions, including sociodemographic data and acceptability evaluation in five domains: accessibility, relationship between the patient and health professionals, conditions of the structure of the service, information to the patient, and equity and opinion of the patient. We have studied qualitative or categorical variables according to the frequency and distribution of proportions. We have used the score transformed into a scale from zero to 100 for the analysis of the Likert-type scale questions. Results have been expressed as mean and standard deviation., Results: Access to prenatal appointments was evaluated as good or excellent by 86.1% of the participants and laboratory tests was evaluated as good or excellent by 85.2% of them. The access to imaging tests was evaluations as good or excellent by 45.7% of the women; 79.5% of the interviewees had their delivery in the maternity hospital where they sought initial care and 18.3% received a home visit by a community health agent after discharge. Most women reported that newborns were placed skin-to-skin immediately after birth, 48.9% had a companion at the time of the delivery, 76.3% were advised about the first appointment of the newborn, and 94.8% were advised on breastfeeding in the maternity hospital. Regarding the evaluation of health professionals, 85.9% of the women considered reception and cordiality as good or excellent at the prenatal care and 94.8% considered it as good or excellent at the maternity hospital., Conclusions: The active health Ombudsman service has contributed to evaluate the quality of public management by allowing the incorporation of the perspective of users of the health service in the evaluation of the acceptability of the Cegonha Network in the Federal District of Brazil.