Characterization of the patterns of care, access, and direct cost of systemic lupus erythematosus in Brazil: findings from the Macunaíma study

Abstract Background A cost of illness (COI) study aims to evaluate the socioeconomic burden that an illness imposes on society as a whole. This study aimed to describe the resources used, patterns of care, direct cost, and loss of productivity due to systemic lupus erythematosus (SLE) in Brazil. Methods This 12-month, cross-sectional, COI study of patients with SLE (ACR 1997 Classification Criteria) collected data using patient interviews (questionnaires) and medical records, covering: SLE profile, resources used, morbidities, quality of life (12-Item Short Form Survey, SF-12), and loss of productivity. Patients were excluded if they were retired or on sick leave for another illness. Direct resources included health-related (consultations, tests, medications, hospitalization) or non-health-related (transportation, home adaptation, expenditure on caregivers) hospital resources. Costs were calculated using the unit value of each resource and the quantity consumed. A gamma regression model explored cost predictors for patients with SLE. Results Overall, 300 patients with SLE were included (92.3% female, mean [standard deviation (SD)] disease duration 11.8 [7.9] years), of which 100 patients (33.3%) were on SLE-related sick leave and 46 patients (15.3%) had stopped schooling. Mean (SD) travel time from home to a care facility was 4.4 (12.6) hours. Antimalarials were the most commonly used drugs (222 [74.0%]). A negative correlation was observed between SF-12 physical component and SLE Disease Activity Index (- 0.117, p = 0.042), Systemic Lupus International CollaboratingClinics/AmericanCollegeofRheumatology Damage Index (- 0.115, p = 0.046), medications/day for multiple co-morbidities (- 0.272, p < 0.001), SLE-specific drugs/day (- 0.113, p = 0.051), and lost productivity (- 0.570, p < 0.001). For the mental component, a negative correlation was observed with medications/day for multiple co-morbidities (- 0.272, p < 0.001), SLE-specific medications/day (- 0.113, p = 0.051), and missed appointments (- 0.232, p < 0.001). Mean total SLE cost was US$3,123.53/patient/year (median [interquartile range (IQR)] US$1,618.51 [$678.66, $4,601.29]). Main expenditure was medication, with a median (IQR) cost of US$910.62 ($460, $4,033.51). Mycophenolate increased costs by 3.664 times (p < 0.001), and inflammatory monitoring (erythrocyte sedimentation rate or C-reactive protein) reduced expenditure by 0.381 times (p < 0.001). Conclusion These results allowed access to care patterns, the median cost for patients with SLE in Brazil, and the differences across regions driven by biological, social, and behavioral factors. The cost of SLE provides an updated setting to support the decision-making process across the country.

‘Makkalai Thedi Maruthuvam’ scheme in Tamil Nadu: an intersectionality-based analysis of access to NCD care.

There are gross inequities in access to non-communicable disease (NCD) care in India. The Indian state of Tamil Nadu recently launched the “Medicine at people’s doorstep” (Makkalai Thedi Maruthuvam — MTM) scheme in which screening and medications for NCDs are delivered at people’s doorsteps. This is likely to improve geographical access to NCD services in the community. The objective of this study is to analyse the MTM scheme and recommend policy interventions for improved and equitable access to NCD services in the community. We analysed the MTM policy document using the intersectionality-based policy analysis framework. This analysis was supplemented further with literature review to enhance understanding of the various intersecting axes of inequities, such as gender discrimination, caste oppression, poverty, disabilities and geographical access barriers. The MTM policy document, while it removes the physical access barrier, does not frame the problem of NCDs from an intersectionality perspective. This can increase the chances of inequities in access to NCD services persisting despite this scheme. We also recommend interventions for the short, intermediate and long term to make NCD care more accessible. Creation of a gender, caste, class, geographical access, and disabilities disaggregated database of patients with NCDs, using this database for monitoring the delivery of MTM services, dynamic mapping of vulnerability of the target populations for delivery of MTM services and long term ongoing digital surveillance of factors inducing inequities to access of NCD services can all help reduce inequities in access to NCD care.

Access to HER2?targeted therapy at a tertiary care center in India: An evolution

Background:In a previous retrospective audit from our institution we reported that patients had limited access to HER2-targeted therapy due to financial constraints. Subsequently, the advent of biosimilar versions of trastuzumab and philanthropic support has potentially changed this situation. Herein, we reanalyzed and reported access to HER2-targeted therapy in a more recent cohort of patients. Methods: Medical records of new breast cancer patients registered in one calendar year were retrospectively reviewed, supplemented by online pharmacy data to extract information on receptor status, use of HER2-targeted therapy, and other relevant variables. Since not all HER2 immunohistochemistry (IHC) 2+ tumors underwent fluorescent in-situ hybridization (FISH) testing, we estimated the probable HER2 amplified from this group based on a FISH amplified fraction in those HER2 2+ tumors who did undergo FISH. Results: Between January 2016 and December 2016, 4717 new BC patients were registered at our institution, of whom 729 (20.04%) had HER2 IHC 3+ tumors while 641 (17.62%) had HER2 IHC 2+ tumors. The final number of HER2 overexpressing/amplified tumors was estimated to be 928 (729 HER2 IHC 3+, 105 known FISH amplified, and 94 estimated FISH amplified), of whom 831 received treatment at our institution. Overall 474 (57.03%, 95% confidence interval [CI] 53.6–60.4) of these 831 patients received trastuzumab for durations ranging from 12 weeks to 12 months in the (neo)adjuvant setting or other durations in metastatic setting compared to 8.61% (95% CI 6.2–11.6) usage of HER2-targeted therapy in the 2008 cohort. Conclusion: Access to HER2-targeted therapy has substantially increased among patients treated at a public hospital in the past decade, likely due to the advent of biosimilars, the use of shorter duration adjuvant regimens, and philanthropic support. However, further efforts are required to achieve universal access to this potentially life-saving treatment.

Implementación de una estrategia de revinculación a la atención en pacientes con infección crónica por el virus de la hepatitis C en el Hospital Central de las Fuerzas Armadas de Uruguay. Resultados preliminares

Resumen: Introducción: La infección crónica por el virus de la hepatitis C (VHC) es responsable de 400.000 muertes al año, asociadas fundamentalmente al desarrollo de cirrosis y carcinoma hepatocelular. El advenimiento de los nuevos antivirales de acción directa ha marcado un punto de inflexión en el tratamiento del VHC, llevando a casi 100% la curación de los pacientes tratados. En tal sentido, la OMS se ha fijado como objetivos para el año 2030, reducir un 90% las nuevas infecciones por el VHC y un 65% la mortalidad asociada a este virus, para lo cual es necesario el desarrollo de estrategias activas de diagnóstico y vinculación a la atención y tratamiento. El objetivo del trabajo es realizar un diagnóstico de situación de los pacientes infectados por el VHC en el Hospital Central de las Fuerzas Armadas (HCFFAA), e implementar y evaluar una estrategia secuencial de revinculación a la atención. Metodología: Se construyó la cascada de tratamiento mediante una estimación de los pacientes portadores de infección crónica por VHC basada en la prevalencia local y la revisión de historias clínicas de los pacientes asistidos en el servicio de Hepatología y Trasplante Hepático del HCFFAA. Se implementó una estrategia para contactar a los pacientes con infección por VHC de forma secuencial, buscando re-establecer el vínculo de estos con el servicio de salud, asegurando el acceso a la estadificación de la enfermedad hepática y al tratamiento antiviral. Resultados: La prevalencia global estimada de personas con infección crónica por VHC fue de 1.008 personas. De 135 pacientes con serología positiva, 113 tenían ARN confirmatorio, 76 habían recibido tratamiento y 70 habían alcanzado respuesta virológica sostenida. La implementación de la estrategia logró un aumento en la prescripción del tratamiento del 67% a 76% de los pacientes con infección crónica por VHC confirmada. Conclusiones: La implementación de la estrategia de revinculación fue exitosa, con un aumento de la prescripción del tratamiento antiviral en los pacientes candidatos a tratamiento. La búsqueda activa de los pacientes infectados no diagnosticados mediante el cribado es el siguiente paso para alcanzar los objetivos de erradicación.

Abstract: Introduction: Chronic infection by the hepatitis C virus (HCV) is responsible for 400,000 deaths per year, mainly associated with the development of cirrhosis and hepatocellular carcinoma. The advent of new direct-acting antivirals has marked a turning point in the treatment of HCV, leading to almost 100% cure of treated patients. In this sense, the WHO has set as objectives for the year 2030, to reduce new HCV infections by 90% and the mortality associated with this virus by 65%, for which it is necessary to develop active strategies for diagnosis and linkage to care and treatment. The objective of the work is to carry out a diagnosis of the situation of the patients infected by HCV in the Central Hospital of the Armed Forces (HCFFAA), and to implement and evaluate a sequential strategy of re-attachment to care. Methodology: The treatment cascade was constructed by estimating the number of patients with chronic HCV infection based on local prevalence and review of the medical records of patients seen in the Hepatology and Liver Transplant service of the HCFFAA. A strategy was implemented to contact patients with HCV infection sequentially, seeking to re-establish their link with the health service, ensuring access to liver disease staging and antiviral treatment. Results: The estimated global prevalence of people with chronic HCV infection was 1,008 people. Of 135 patients with positive serology, 113 had confirmatory RNA, 76 had received treatment, and 70 had achieved sustained virologic response. The implementation of the strategy achieved an increase in the prescription of treatment from 67% to 76% of patients with confirmed chronic HCV infection. Conclusions: The implementation of the rebinding strategy was successful, with an increase in the prescription of antiviral treatment in patients who are candidates for treatment. Active search for undiagnosed infected patients through screening is the next step to achieve eradication goals.

Resumo: Introdução: A infecção crônica pelo vírus da hepatite C (HCV) é responsável por 400.000 óbitos por ano, principalmente associada ao desenvolvimento de cirrose e carcinoma hepatocelular. O advento de novos antivirais de ação direta marcou um ponto de virada no tratamento do HCV, levando à cura de quase 100% dos pacientes tratados. Nesse sentido, a OMS estabeleceu como objetivos para o ano de 2030, reduzir em 90% as novas infecções por HCV e a mortalidade associada a este vírus em 65%, para o que é necessário desenvolver estratégias ativas de diagnóstico e vinculação aos cuidados e tratamento. O objetivo do trabalho é realizar um diagnóstico da situação dos pacientes infectados pelo HCV no Hospital Central das Forças Armadas (HCFFAA), e implementar e avaliar uma estratégia sequencial de reinserção aos cuidados. Metodologia: A cascata de tratamento foi construída estimando o número de pacientes com infecção crônica pelo HCV com base na prevalência local e revisão dos prontuários dos pacientes atendidos no serviço de Hepatologia e Transplante de Fígado do HCFFAA. Foi implantada uma estratégia de contato sequencial dos pacientes com infecção pelo HCV, buscando restabelecer o vínculo com o serviço de saúde, garantindo o acesso ao estadiamento da doença hepática e ao tratamento antiviral. Resultados: A prevalência global estimada de pessoas com infecção crônica pelo HCV foi de 1.008 pessoas. Dos 135 pacientes com sorologia positiva, 113 tiveram RNA confirmatório, 76 receberam tratamento e 70 alcançaram resposta virológica sustentada. A implementação da estratégia conseguiu um aumento na prescrição de tratamento de 67% para 76% dos pacientes com infecção crônica pelo HCV confirmada. Conclusões: A implementação da estratégia de religação foi bem sucedida, com aumento da prescrição do tratamento antiviral em pacientes candidatos ao tratamento. A busca ativa de pacientes infectados não diagnosticados por meio de triagem é o próximo passo para atingir as metas de erradicação.

Point-of-care hepatitis C screening with direct access referral to improve linkage to care among halfway house residents: a pilot randomised study

INTRODUCTION@#Linkage to care among individuals with substance misuse remains a barrier to the elimination of the hepatitis C virus (HCV). We aimed to determine whether point-of-care (PoC) education, screening and staging for liver disease with direct access to hospitals would improve linkage to care among this group. @*METHODS@#All participants were offered PoC education and HCV screening. HCV-positive participants were randomised to standard care (controls) or direct access, which provided a direct pathway to hospitals. Linkage to care was determined by reviewing electronic medical records. Linkage of care cascade was defined as attendance at the specialist clinic, confirmation of viraemia by HCV RNA testing, discussion about HCV treatment and initiation of treatment. @*RESULTS@#351 halfway house residents were screened. The overall HCV prevalence was 30.5% (n = 107), with 69 residents in the control group and 38 in the direct access group. The direct access group had a significantly higher percentage of cases linked to specialist review for confirmatory RNA testing (63.2% vs. 40.6%, p = 0.025), HCV treatment discussion (p = 0.009) and treatment initiation (p = 0.01) compared to the controls. Overall, only 12.6% (n = 13) had treatment initiation during follow-up. PoC HCV screening with direct access referral had significantly higher linkage to HCV treatment initiation (adjusted odds ratio 9.13, p = 0.005) in multivariate analysis. @*CONCLUSION@#PoC HCV screening with direct access improves linkage to care and simplifies the HCV care cascade, leading to improved treatment uptake. PoC education, screening, diagnosis and treatment may be an effective strategy to achieving HCV micro-elimination in this population.

Medición funcional en el dominio de la ética empírica / Functional Measurement in the Field of Empirical Ethics / Medição funcional no domínio da ética empírica

El presente artículo propone un enfoque empírico de la ética derivado de la teoría psicológica del juicio humano propuesta por Norman Anderson. Muestra cómo la metodología de esta teoría ­denominada medición funcional­ puede utilizarse para caracterizar las diversas posiciones personales que existen en todas las sociedades respecto a los problemas de salud pública. Los principales resultados de tres estudios realizados en tres países diferentes (Guinea, Francia y Colombia) se presentan como ilustración de lo que puede aportar este enfoque. Dichos análisis se centraron en tres problemas deliberadamente muy diferentes: (a) el deber de atender a los pacientes infectados, en caso de una epidemia que ponga en peligro la vida de los cuidadores; (b) la aceptabilidad de la reproducción postmortem, en el caso de los soldados que mueren en combate, y (c) la aceptabilidad del suicidio asistido por un médico

This paper presents the proposal of an empirical ap-proach to ethics derived from a psychological theory of human judgment proposed by Norman Anderson. It shows how the methodology specific to this theory ­functional measurement­ makes it possible to char-acterize the various personal positions that exist in all societies regarding public health problems. The main results of three studies carried out in three different countries (Guinea, France, and Colombia) on various problems are presented as an illustration of what this approach can offer. These analyses focused on three deliberately very different problems: (a) the duty to care for infected patients in the event of a pandemic that puts at risk the lives of the health professionals, (b) the acceptability of postmortem reproduction in the specific context of fallen soldiers, and (c) the accept-ability of physicianassisted suicide

Este artigo propõe uma abordagem empírica da ética derivada da teoria psicológica do julgamento humano proposta por Norman Anderson. Mostra como a metodo-logia dessa teoria ­ denominada medição funcional­ pode ser utilizada para caracterizar as diversas posições pessoais que existem em todas as sociedades em relação aos problemas de saúde pública. Os principais resulta-dos de três estudos, realizados em três países diferentes (Guiné, França e Colômbia), são apresentados como uma ilustração do que esta abordagem pode contribuir. Esses estudos se concentraram em três problemas de-liberadamente muito diferentes: (a) o dever de cuidar de pacientes infectados no caso de uma epidemia que ponha em risco a vida dos cuidadores, (b) a aceitabilida-de da reprodução postmortem no caso de soldados que morrem em combate, e (c) a aceitabilidade do suicídio assistido por médicos

Quality of referrals to a rheumatology service before and after implementation of a triage system with telemedicine support

Abstract Purpose: To evaluate the quality of referrals for a first Rheumatology consultation at a tertiary care center in a southern Brazilian capital (Porto Alegre, RS), having as background findings from a similar survey performed in 2007/2008. Since then, our state has implemented referral protocols and a triage system with teleconsulting support exclusively for referrals from locations outside the capital, permitting a comparison between patients screened and not screened by the new system. Methods: Physicians of the Rheumatology Service at Hospital Nossa Senhora da Conceição prospectively collected information regarding first visits over a 6-month period (Oct 2017 to March 2018). We recorded demographic characteristics, diagnostic hypotheses, date of referral, and the municipality of origin (within the state of Rio Grande do Sul). We considered adequate referrals from primary health care when a systemic autoimmune inflammatory disease (SIRD) was suspected at first evaluation by the attending rheumatologist. Results: Three hundred fifty-seven patients/appointments were eligible for analysis (193 from the capital and 164 from small and medium towns). In 2007/2008, suspected SIRD occurred in 76/260 (29.2%) and 73/222 (32.9%) among patients from the capital and outside counties, respectively (P = 0.387). In 2017/2018, suspected SIRD occurred in 75/193 (38.9%) and 111/164 (67.7%) in patients from the capital and outside counties, respectively (difference: 28.8, 95% CI: 19.0 to 38.9, P < 0.001), indicating a marked improvement in referrals submitted to the new triage system. Conclusion: The quality of Rheumatology referrals in our state improved over the 10-year interval under study, particularly among patients from locations submitted to referral protocols and teleconsulting support.

Providers’ perceptions of the key issues affecting the delivery of quality services at a Dental Clinic in Port Moresby, Papua New Guinea: a qualitative descriptive study

@#The aim of this study was to identify factors that affect the dental service delivery in a dental clinic from the context of Papua New Guinean dental providers and to make practical recommendations to improve dental service delivery. This qualitative descriptive study used individual interviews with seven dental providers to identify the factors that were affecting quality dental service delivery in a dental clinic in Papua New Guinea. The factors influencing the quality of dental service fell into three categories and 8 themes. The categories were environmental factors with themes of resources and facilities, leadership and management, partnership development and collaboration; provider-related factors with themes provider competence, provider motivation and satisfaction; and required measures with the themes of a new dental clinic building, renovation of the main clinic area and organizational structure. Quality dental service is achieved when there is a supportive working environment with availability of (new) physical amenities and dental resources, and proper management and organizational structures with supportive visionary leadership. This would encourage teamwork and partnership development internally within the dental team and externally with its stakeholders. Furthermore, it would increase staff motivation and satisfaction internally and partnership development internally within the dental staff and externally with its stakeholders. Consider creating a new dental clinic. Develop a contract between the University and the Hospital to resolve the property ownership issues. Create a clear organizational structure and improve management interaction with clinical staff so that management is supportive. Improve the quality of dental supplies and create an efficient material ordering system. Ensure fairness to staff and respect to procedures are compliantly maintained to encourage teamwork. Reward clinical staff for mentoring and teaching dental students. Create access to continuing professional development for the clinical staff.

Habilidad de cuidado del cuidador de adultos mayores no institucionalizados de Manizales ­ Caldas, Colombia / Skill of care of the caregiver of non-institutionalized older adults of Manizales ­Caldas, Colombia

El aumento de adultos mayores con enfermedades crónicas y que requiere de un cuidador permanente se ha convertido en un fenómeno de interés para la disciplina de enfermería, con miras al mejoramiento de calidad de vida de las personas. OBJETIVO: describir la habilidad del cuidado del cuidador en adultos mayores no institucionalizados de una institución de salud de Manizales. METODOLOGÍA: estudio, descriptivo de corte transversal, cuyo propósito fue identificar la habilidad del cuidado de los cuidadores de adultos mayores y sus características sociodemográficas; de abordaje cuantitativo mediante la aplicación del instrumento "Habilidad de cuidado en cuidadores de personas con enfermedad crónica". RESULTADOS: se destaca el cuidador de género femenino 86,6%, con edad promedio de 48 años, con algún grado de escolaridad, religión predominante la católica con 88.4%; se encontraron cuidadores con un promedio general de habilidad del cuidado de 137 puntos, que lo ubica por encima de la media del instrumento que es de 120 puntos. Tiempo cuidado al cuidado con un promedio de 45 meses. Los resultados por dimensiones en la escala del 1 al 4 fueron: relación 2,9, comprensión 3,2 puntos y modificación de vida 2,9. Se encontró asociación entre la dimensión de comprensión con el estrato socioeconómico; CONCLUSIONES: a pesar de que se evidencia resultados positivos en la habilidad de los cuidadores es necesario generar acciones específicas de cuidado de la población atendida y sus necesidades además garantiza la calidad de la atención y mejorar la satisfacción del paciente.

The increase of older adults with chronic diseases and requiring a permanent caregiver has become a phenomenon of interest for the nursing discipline, with a view to improving the quality of life of people. OBJECTIVE: to describe the ability of caregiver care in non-institutionalized older adults of a health institution in Manizales. METHODOLOGY: a descriptive, cross-sectional study, whose purpose was to identify the care ability of caregivers of older adults and their sociodemographic characteristics; of quantitative approach through the application of the "Skill of care in caregivers of people with chronic disease" instrument. RESULTS: the female caregiver stands out 86.6%, with an average age of 48 years, with some level of education, predominantly Catholic religion with 88.4%; Caregivers were found with a general average of care skill of 137 points, which places it above the average of the instrument that is 120 points. Care-to-care time with an average of 45 months. The results by dimensions on the scale of 1 to 4 were: relationship 2.9, understanding 3.2 points and life modification 2.9. An association was found between the dimension of understanding and the socioeconomic stratum; CONCLUSIONS: in spite of the fact that positive results are evidenced in the ability of caregivers, it is necessary to generate specific care actions for the population served and their needs, it also guarantees the quality of care and improves patient satisfaction.

The time required to diagnose and treat lung cancer in Delhi, India: an updated experience of a public referral center

Background: Delays that postpone the evaluation and management of malignancy may lead to considerable morbidity. The primary objective of this study was to assess the time required to diagnose and treat lung cancer at an Indian public referral center that predominantly serves lower-income patients. Methods: A review of patients diagnosed with lung cancer between January 2008 and December 2016 was completed. We computed the median time intervals and inter-quartile ranges between symptom onset, definitive diagnostic investigation, confirmed histologic diagnosis, and chemotherapy initiation. Median intervals were correlated with baseline demographics and disease characteristics using Kruskal-Wallis test. Results: One thousand, three hundred and-seventy patients were selected. A majority (94.5%) with non-small cell lung cancer were diagnosed with advanced disease. After developing symptoms, patients required 101 [56­168] days to undergo a definitive diagnostic study, 107 [60­173] days to confirm a diagnosis, and 126 [85­196.8] days to initiate treatment. Patients who were previously treated for tuberculosis required more time to receive chemotherapy compared to those who were not (187 [134­261.5] days vs. 113 [75­180] days, p < 0.0001). A specialty Lung Cancer Clinic was implemented in 2012, and the mean referrals per month increased nearly four-fold (p < 0.0001), but the time required to administer treatment was not shortened. Conclusion: Among lower-income Indian patients, the most prominent delays occur prior to diagnosis. Efforts should be directed toward encouraging physicians to maintain a high index of clinical suspicion and educating patients to report concerning symptoms as early as possible.

What we do and do not know about women and kidney diseases; Questions unanswered and answers unquestioned: Reflection on World Kidney Day and International Woman's Day / Salud renal y salud en la mujer: Una oportunidad para mejorar las condiciones de las generaciones actuales y futuras

Abstract Chronic Kidney Disease affects approximately 10% of the world's adult population: it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically their kidney health, on the community, and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% of the world's population, are important contributors to society and their families. Gender differences continue to exist around the world in access to education, medical care, and participation in clinical studies. Pregnancy is a unique state for women, offering an opportunity for diagnosis of kidney disease, but also a state where acute and chronic kidney diseases may manifest, and which may impact future generations with respect to kidney health. There are various autoimmune and other conditions that are more likely to impact women with profound consequences for child bearing, and on the fetus. Women have different complications on dialysis than men, and are more likely to be donors than recipients of kidney transplants. In this editorial, we focus on what we do and do not know about women, kidney health, and kidney disease, and what we might learn in the future to improve outcomes worldwide.

Resumen La enfermedad renal crónica afecta cerca del 10 % de la población mundial adulta: es una de las primeras 20 causas de muerte en el mundo y el impacto de la enfermedad en el paciente y sus familias puede ser devastador. En el 2018 el Día Mundial del Riñón y el Día Internacional de la Mujer coinciden, ofreciéndonos una oportunidad para demostrar el impacto que tiene la salud de la mujer, específicamente su salud renal, en la comunidad y en las generaciones futuras, es importante fomentar el conocimiento sobre aspectos específicos de la enfermedad renal en la mujer y poder aplicarlos de forma extensiva. Las mujeres y niñas representan aproximadamente el 50 % de la población mundial, siendo integrantes fundamentales de la sociedad y de sus familias. Las diferencias de género persisten alrededor del mundo, afectando su acceso a la educación, cuidados de salud y su inclusión en estudios clínicos. Actualmente, el embarazo en la mujer es una etapa única que ofrece la oportunidad de diagnosticar la enfermedad renal, donde las enfermedades renales agudas y crónicas pueden manifestarse, lo cual podría impactar en la salud renal de las generaciones futuras. Existen varias enfermedades autoinmunes y algunos otros factores que afectan más comúnmente a la mujer, con serias consecuencias durante el embarazo para la madre y para el feto. Las mujeres en diálisis en comparación con los hombres tienen complicaciones diferentes; además son más comúnmente donadoras que receptoras del trasplante renal. En esta editorial, nos enfocamos en qué hacemos y en qué no conocemos sobre la mujer, la salud y enfermedad renal, y qué podemos aprender para mejorar sus condiciones en todo el mundo.

Parkinson's Disease in Sub-Saharan Africa: A Review of Epidemiology, Genetics and Access to Care

A low prevalence of Parkinson's disease (PD) has been reported in the Sub-Saharan Africa (SSA) region. The genetic causes and clinical features of PD in this region have been poorly described. Very few reports have examined the availability and access to evidence-based quality care for people living with PD in this region. We reviewed all publications focusing on idiopathic PD from SSA published up to May 2016 and observed a prevalence of PD ranging from 7/100,000 in Ethiopia to 67/100,000 in Nigeria. The most recent community-based study reported a mean age at onset of 69.4 years. The infrequent occurrence of mutations in established PD genes was also observed in the region. Treatments were non-existent or at best irregular. Additionally, there is a lack of well-trained medical personnel and multidisciplinary teams in most countries in this region. Drugs for treating PD are either not available or unaffordable. Large-scale genetic and epidemiological studies are therefore needed in SSA to provide further insights into the roles of genetics and other etiological factors in the pathogenesis of PD. The quality of care also requires urgent improvement to meet the basic level of care required by PD patients.

Proper patient education improves hepatitis C patients’ disease-related knowledge and antiviral treatment acceptance in rural China / 中华肝脏病杂志

Objective@#To evaluate the affect of hepatitis C virus (HCV) education in chronic hepatitis C patients’ disease related knowledge and antiviral treatment acceptance in rural china.@*Methods@#Rural HCV patients of attended CHC project of HCV education. Doctor delivered subsequent interactive lecture, and patients completed pre- and post-education questionnaires before and after taking the lectures.@*Results@#151 CHC patients were included. Mean age was 57.3 years old, 50.3% were male, 51.0% of the students had primary school education or illiterate, and 76.2% had a monthly income below RMB 3,000. 98.0% of patients defined their baseline HCV knowledge as "nothing" or "a little bit". A multivariate analysis reveled baseline knowledge scores were associated with age and household income. After education, mean knowledge score (range: 0-28) increased from 13.1 to 23.0 (P < 0.001) and average percent of patients with correct answers from the topic rose from 46.8% to 82.1% (P < 0.001), and patients’ antiviral treatment acceptance increased from 33.9% to 65.6% (P < 0.001).@*Conclusion@#A rural Chinese patients had less education, HCV education delivered on the preferred format of patients substantially improved hepatitis C patients’ disease-related knowledge and antiviral treatment acceptance in rural china.

Autism Spectrum Disorder: Patients’ Oral Health Behaviors and Barriers in Oral Care from Parents’ Perspectives

@#To assess the oral health behaviors of children with Autism Spectrum Disorder (ASD) and explore attitudes and barriers in providing oral care by their parents. A cross-sectional, mixed method study design, which comprised of quantitative and qualitative sections was conducted. The quantitative part assessed the oral health behavior through a parent-proxy report questionnaire whilst the qualitative part assessed parents’ overall perspective on maintenance of oral health in children with ASD through an in-depth interview using semi-structured questions. All children below the age of 16 who have been clinically diagnosed with ASD and registered at the Pediatric Dental Clinic were included. The sample consisted of twenty children with ASD. Most of the sample were male and between 5-8 years old. Majority had good oral health behaviors but some exhibited self-injurious behaviors that may affect oral health. Severe characteristics of ASD, co-morbid conditions and incompetent health professionals were reported as barriers in oral care by parents of these children. Despite having good oral health behaviors, several barriers and challenges were expressed by these parents with ASD when providing home oral care or bringing them for dental appointment. Continuous support for parents with ASD child by dental professionals is essential to help overcome the real challenges and barriers in providing oral care among these parents.

Health Disparities: Challenges, Opportunities, and What You Can Do About It / Desigualdades na saúde: desafios, oportunidades e o que você pode fazer sobre isso

Racial disparities in health outcomes, access to health care, insurance coverage, and quality of care in the United States have existed for many years. The Development and implementation of effective strategies to reduce or eliminate health disparities are hindered by our inability to accurately assess the extent and types of health disparities due to the limited availability of race/ethnicity-specific information, the limited reliability of existing data and information, and the increasing diversity of the American population. Variations in racial and ethnic classification used to collect data hinders the ability to obtain reliable and accurate health-indicator rates and in some instances cause bias in estimating the race/ethnicity-specific health measures. In 1978, The Office of Management and Budget (OMB) issued "Directive 15" titled "Race and Ethnic Standards for Federal Statistics and Administrative Reporting" and provided a set of clear guidelines for classifying people by race and ethnicity. Access to health care, behavioral and psychosocial factors as well as cultural differences contribute to the racial and ethnic variations that exist in a person's health. To help eliminate health disparities, we must ensure equal access to health care services as well as quality of care. Health care providers must become culturally competent and understand the differences that exist among the people they serve in order to eliminate disparities. Enhancement of data collection systems is essential for developing and implementing interventions targeted to deal with population-specific problems. Developing comprehensive and multi-level programs to eliminate healthcare disparities requires coordination and collaboration between the public (Local, state and federal health departments), private (Health Insurance companies, private health care providers), and professional (Physicians, nurses, pharmacists, laboratories, etc) sectors.

Disparidades raciais nos resultados de saúde, acesso a cuidados de saúde, cobertura de seguro e qualidade de atendimento nos Estados Unidos existem há muitos anos. O desenvolvimento e a implementação de estratégias efetivas para reduzir ou eliminar as disparidades de saúde são dificultadas pela nossa incapacidade de avaliar com precisão a extensão e os tipos de disparidades de saúde devido à disponibilidade limitada de informações específicas de raça / etnia, confiabilidade limitada dos dados e informações existentes. e a crescente diversidade da população americana. Variações na classificação racial e étnica usadas para coletar dados dificultam a obtenção de índices confiáveis e precisos de indicadores de saúde e, em alguns casos, causam viés na estimativa de medidas de saúde específicas de raça / etnia. Em 1978, o Escritório de Administração e Orçamento (OMB) publicou a "Diretriz 15" intitulada "Normas Raciais e Étnicas para Estatísticas Federais e Relatórios Administrativos" e forneceu um conjunto de diretrizes claras para classificar as pessoas por raça e etnia. O acesso a cuidados de saúde, factores comportamentais e psicossociais, bem como diferenças culturais, contribuem para as variações raciais e étnicas que existem na saúde de uma pessoa. Para ajudar a eliminar as disparidades de saúde, devemos garantir a igualdade de acesso aos serviços de saúde, bem como a qualidade do atendimento. Os prestadores de cuidados de saúde devem tornar-se culturalmente competentes e compreender as diferenças existentes entre as pessoas que servem para eliminar as disparidades. O aprimoramento dos sistemas de coleta de dados é essencial para desenvolver e implementar intervenções direcionadas para lidar com problemas específicos da população. O desenvolvimento de programas abrangentes e multiníveis para eliminar as disparidades na atenção à saúde exige coordenação e colaboração entre os setores público, privado e profissional (departamentos de saúde locais, estaduais e federais), privados (empresas de seguro-saúde, provedores privados de saúde) e profissionais (médicos e enfermeiros), farmacêuticos, laboratórios, etc).

What we know and do not know about women and kidney diseases; Questions unanswered and answers unquestioned: Reflection on World Kidney Day and International Woman's Day

Chronic kidney disease affects approximately 10% of the world's adult population: it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically women's kidney health on the community and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% of the world's population, are important contributors to society and their families. Gender differences continue to exist around the world in access to education, medical care, and participation in clinical studies. Pregnancy is a unique state for women, offering an opportunity for diagnosis of kidney disease, but also a state in which acute and chronic kidney diseases may manifest, and which may impact future generations with respect to kidney health. Various autoimmune and other conditions are more likely to impact women, with profound consequences for child bearing and the fetus. Women have different complications on dialysis than men, and are more likely to be donors than recipients of kidney transplants. In this editorial, we focus on what we know and do not know about women, kidney health, and kidney disease, and what we might learn in the future to improve outcomes worldwide.

Mapping an HIV Treatment Program to Identify Barriers to Linkage in HIV Care in Resource Limited Settings.

Aims: To develop a practical method to evaluate and address failures to linkage to care for HIV treatment so as to achieve better access to antiretroviral therapy in resource limited settings. Study Design: A mixed methods analysis to identify and quantify failure to linkage to care involving intensive program mapping, retrospective quantification of retention data, and statistical analysis. Place and Duration of Study: AIC Kijabe Hospital, Kijabe Kenya. Data were collected from January 1 to December 31, 2011. Data collection and analysis was conducted in February 2012. Methodology: First a series of successive interviews of all levels of care providers was used to create a program map and identify linkage points. Following this, data registries were identified and cases at each linkage point were quantified. Simple statistical analysis of retention data were then completed and trends analyzed by Kaplan-Meier survival analysis. Results: Less than 20% of eligible cases testing positive for HIV were enrolled in the treatment program. Most cases enrolled received CD4 testing (78.9%). Most eligible enrolled patients were initiated on ART (82.2%). Patients referred from VCT (voluntary testing) were more likely to be enrolled, receive CD4 testing, and be initiated on therapy. Cases enrolled in the program within 7 days of HIV diagnosis had improved time to initiation of therapy (43 days vs 79 days, p<.001). Cases who received a CD4 test within seven days of diagnosis also had improved time to initiation of therapy (47 vs 77 days, p=.01). Conclusion: This method proved effective to identify, prioritize, and problem solve to improve linkages to care in our setting. Further evaluation should include prospective studies to identify facilitators to linkage and test interventions.

The Patient-Centred Medical Home: A Narrative Review

The “patient-centred medical home” is a model of healthcare delivery first conceived in the United States. It seeks to bring the values and principles of family medicine back into focus in this age of subspecialisation and fragmentation of care. This model is based on the following principles: a personal physician, physician-directed medical practice, whole person orientation, coordinated and integrated care, quality and safety, enhanced access to care and appropriate payment. Locally, should this model of care be implemented, a corresponding change in care delivery and funding model is needed. However, the patient-centred medical home has been associated with positive health outcomes at the primary care level in the United States. It will be interesting to see the potential impact on our healthcare system if such a model were to be implemented in Singapore.

TB/HIV coordination through public private partnership: Lessons from the field.

Background: Co-infection with tuberculosis adversely affects the quality of life of HIV infected individuals and additionally, HIV testing among TB patients gives an opportunity for prevention and treatment of HIV infection. TB-HIV coordination activities are therefore a good public health intervention. Methods: It was a three-year Public Private Partnership Project, implemented in four districts of Maharashtra, to improve access to public health facilities through community awareness and motivating referrals. Outreach workers were engaged to motivate patients attending Integrated Counselling and Testing Centres (ICTCs) and Designated Microscopy Centres (DMCs) for cross referrals and adherence to services. Community leaders and private health providers were sensitized to issues around TB and HIV/AIDS. Observations: 357 outreach workers referred 17,200 individuals for HIV testing and 32,549 TB suspects were referred for testing. An average of 18% TB cases (13% to 26%) and 7% (4% to 13%) HIV infected cases were identified. Involvement of PLHA and cured TB patients can better motivate symptomatics to avail of diagnostic services. Erratic funding affects smooth implementation of programmes. Conclusion: Public Private Partnerships improve access to care. Constant dialogue between all stake holders is essential for successful implementation of such partnerships.

Health Maintenance and Access to Care Among Japanese Living in the U.S. (Pittsburgh, Pennsylvania) / General Medicine

<b>Introduction:</b> Minority ethnic populations have experienced poor health and barriers to accessing care, including Asian American and Pacific Islanders (AAPIs) in the US. Despite some evidence, there is inadequate understanding of the shortcomings of access to care for AAPIs due to substantial variations in health status among AAPI sub-ethnicities. In order to illuminate the access to care issue, we aimed to determine the prevalence of health insurance coverage and health maintenance visits to primary care among one of the major AAPI ethnicities, Japanese in the US city of Pittsburgh, Pennsylvania.<br><b>Methods:</b> Japanese in Pittsburgh registered at an urban primary care clinic where bilingual providers are available were surveyed in terms of health insurance and health maintenance exam. The key results were compared to age- and gender-matched Japanese averages from Japan's national data (Japanese National Health and Nutrition Survey, J-NHANS).<br><b>Results:</b> Of 97 identified for inclusion, all responded (Response rate, 100.0%). The majority of respondents (87.5%) had US-based health insurance. Only 38.5% of men and 17.5% of women visited their primary care physicians for annual health maintenance visits within a year (P < .001 compared to J-NHANS). Only 38.6% of the Japanese women in Pittsburgh who had primary care physicians had annual gynecological exams within a year. The prevalence of annual dental exams within a year was 55.0% and 68.4% in men and women, respectively.<br><b>Conclusions:</b> Despite the high rate of health insurance coverage, Japanese in Pittsburgh had far less health maintenance visits than expected. Improving access to preventive care may help to reduce unnecessary disease.