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3.
PLoS Negl Trop Dis ; 13(9): e0007721, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31545803

RESUMO

This study aimed to assess the impact of the Zika epidemic on the registration of birth defects in Brazil. We used an interrupted time series analysis design to identify changes in the trends in the registration of congenital anomalies. We obtained monthly data from Brazilian Live Birth Information System and used two outcome definitions: 1) rate of congenital malformation of the brain and eye (likely to be affected by Zika and its complications) 2) rate of congenital malformation not related to the brain or eye unlikely to be causally affected by Zika. The period between maternal infection with Zika and diagnosis of congenital abnormality attributable to the infection is around six months. We therefore used September 2015 as the interruption point in the time series, six months following March 2015 when cases of Zika started to increase. For the purposes of this analysis, we considered the period from January 2010 to September 2015 to be "pre-Zika event," and the period from just after September 2015 to December 2017 to be "post-Zika event." We found that immediately after the interruption point, there was a great increase in the notification rate of congenital anomalies of 14.9/10,000 live births in the brain and eye group and of 5.2/10,000 live births in the group not related with brain or eye malformations. This increase in reporting was in all regions of the country (except in the South) and especially in the Northeast. In the period "post-Zika event", unlike the brain and eye group which showed a monthly decrease, the group without brain or eye malformations showed a slow but significant increase (relative to the pre-Zika trend) of 0.2/10,000 live births. These findings suggest an overall improvement in the registration of birth malformations, including malformations that were not attributed to Zika, during and after the Zika epidemic.


Assuntos
Anormalidades Congênitas/epidemiologia , Sistema de Registros/normas , Infecção por Zika virus/complicações , Encéfalo/anormalidades , Brasil/epidemiologia , Anormalidades Congênitas/virologia , Coleta de Dados/normas , Epidemias/estatística & dados numéricos , Anormalidades do Olho/epidemiologia , Feminino , Humanos , Análise de Séries Temporais Interrompida , Gravidez , Complicações Infecciosas na Gravidez/epidemiologia , Complicações Infecciosas na Gravidez/virologia , Zika virus , Infecção por Zika virus/epidemiologia
4.
Endocrinol. diabetes nutr. (Ed. impr.) ; 66(7): 425-433, ago.-sept. 2019. tab
Artigo em Espanhol | IBECS | ID: ibc-182862

RESUMO

Objetivos: Elaborar un registro de situación de los Servicios y Unidades de Endocrinología y Nutrición (S°EyN) del Sistema Nacional de Salud (SNS) y valorar sus recursos asistenciales para desarrollar, a partir de los resultados obtenidos, propuestas de políticas de mejora en los S°EyN. Material y métodos: Estudio descriptivo transversal de los pacientes atendidos en los S°EyN en hospitales generales de agudos del SNS en 2016. Se utilizaron datos obtenidos mediante RECALSEEN 2017, una encuesta «ad hoc» diseñada específicamente para este fin y de las altas dadas por los S°EyN registradas en el CMBD del SNS (2015). Resultados: De un total de 125 hospitales generales de agudos de más de 200 camas instaladas del SNS español, se han obtenido 88 respuestas de los S°EyN, que representan el 70%. El 47% de los S°EyN que respondieron eran servicios y el 31% secciones. El promedio de endocrinólogos por S°EyN era de 7,4±4,4, siendo la tasa media de endocrinólogos por cada 100.000 habitantes de 2,3±1. Las actividades asistenciales más relevantes eran la consulta (promedio de 12,3 primeras consultas por mil habitantes y año), hospital de día (mediana de 2.000 sesiones/año) e interconsulta hospitalaria (mediana de 900 interconsultas/año). El 83% de los S°EyN incorporaban una Unidad de Nutrición Clínica. La dotación de dietistas, técnicos en nutrición y bromatólogos en las Unidades de Nutrición Clínica era baja. En relación con la gestión de la calidad se detectó un amplio margen de mejora; solamente un 35% de los S°EyN tenían responsable de calidad y el 38% había implantado una gestión por procesos para aquellos más frecuentemente atendidos por la unidad. Existen notables diferencias en estructura, recursos y actividad de los S°EyN entre Comunidades Autónomas. Conclusiones: La encuesta RECALSEEN 2017 es útil para el análisis de los S°EyN. La notable variabilidad hallada en los indicadores de estructura, actividad y gestión probablemente indica relevantes diferencias y, por tanto, un amplio margen de mejora


Objectives: To elaborate a diagnosis of the situation regarding the assistance in the Services and Units of Endocrinology and Nutrition (S°EyN) of the National Health System of Spain (SNHS) and to develop, based on the results obtained, proposals for improvement policies in the S°EyN. Material and methods: Cross-sectional descriptive study of the patients treated in the S°EyN departments of acute general hospitals of the SNHS in 2016. Data were obtained through RECALSEEN 2017, an "ad hoc" survey designed specifically for this purpose, and the Minimum Basic Data Set of discharges given by the S°EN of the SNHS (2015). Results: 88 responses of S°EyN have been obtained forma total of 125 acute general hospitals of more than 200 beds installed in the SNHS (70% answers). 47% of the S°EyN respondents were services and 31% sections. The average of endocrinologists by S°EyN was 7.4±4.4, and the average rate of endocrinologists per 100,000 inhabitants was 2.3±1. The most relevant care activities were the consultation (average of 12.3 first consultations per thousand inhabitants and year), day hospital (median of 2,000 sessions/year) and in-hospital consultations (median of 900 in-hospital consultations/year). 83% of S°EyNhad a Clinical Nutrition Unit. The number of dietitians, nutrition technicians and nutritionists in the Clinical Nutrition Unit was low. In relation to quality management, a large margin for improvement was detected; only 35% of S°EyN had a responsible of quality and 38% had implemented process management for those most frequent processes in the unit. There were notable differences in structure, resources and activity of S°EyN between Autonomous Communities. Conclusions: RECALSEEN 2017 survey is a useful tool for the analysis of S°EyN. The remarkable variability found in the structure, activity and management indicators probably indicates significant differences and, therefore, a wide margin for improvement


Assuntos
Humanos , Unidades Hospitalares , Assistência ao Paciente/estatística & dados numéricos , Sistemas Nacionais de Saúde/organização & administração , Sistema de Registros/normas , Endocrinologistas/estatística & dados numéricos , Política de Saúde , Estudos Transversais , Gestão da Qualidade , Análise Estatística , Serviço Hospitalar de Nutrição/organização & administração , Serviço Hospitalar de Nutrição/normas , Endocrinologistas/organização & administração , Endocrinologistas/provisão & distribução
5.
N Z Med J ; 132(1500): 40-49, 2019 08 16.
Artigo em Inglês | MEDLINE | ID: mdl-31415498

RESUMO

AIMS: The ANZACS-QI Cardiac Implanted Device Registry (ANZACS-QI DEVICE) collects data on cardiac implantable electronic devices inserted in New Zealand. We evaluated completeness of data capture and quality of ANZACS-QI DEVICE in 2016. METHODS: Complete datasets within ANZACS-QI DEVICE, comprising DEVICE-PPM (permanent pacemakers) and DEVICE-ICD (implantable cardioverter defibrillators), from 1 January 2016 to 31 December 2016 were linked with the National Hospitalisation dataset (all New Zealand public hospital admissions). The total number of implants included procedures captured in either dataset. Variables assessed included age, gender, ethnicity, procedure type, implanting centre, admission and procedure date. RESULTS: DEVICE-PPM captured 85.9% of all PPM procedures (n=2,512). This was similar regardless of age, sex and ethnicity. In the 84.4% of procedures captured in both datasets, agreement was >97% for all variables except admission date (90.1%). DEVICE-ICD captured 81.3% of all ICD procedures (n=690). Capture was similar across age, sex and ethnicity groups. In the 76.8% of procedures captured in both datasets, agreement was >96% for all variables except admission date (90.6%). CONCLUSION: The ANZACS-QI DEVICE registry had a good capture rate and excellent agreement with the national dataset. This high concordance supports the use of both datasets for future research.


Assuntos
Bases de Dados Factuais/normas , Desfibriladores Implantáveis/estatística & dados numéricos , Marca-Passo Artificial/estatística & dados numéricos , Sistema de Registros/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Pesquisa Biomédica , Coleta de Dados , Feminino , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Nova Zelândia
6.
Zhonghua Wei Chang Wai Ke Za Zhi ; 22(8): 729-735, 2019 Aug 25.
Artigo em Chinês | MEDLINE | ID: mdl-31422610

RESUMO

Objective: To explore the feasibility of assessing complications registration through medical information. Methods: A descriptive case series study was performed to retrospectively collect medical information and complication registration information of gastric cancer patients at Department of Gastrointestinal Cancer Center Ward I, Peking University Cancer Hospital from November 1, 2016 to March 1, 2017 (the first period), and from November 1, 2018 to March 1, 2019 (the second period). Case inclusion criteria: (1) adenocarcinoma confirmed by gastroscopy and biopsy; (2) patients undergoing open surgery or laparoscopic radical gastrectomy; (3) complete postoperative medical information and complication information. Patients who were directly transferred to ICU after surgery and underwent emergency surgery were excluded. Because difference of the complication registration procedure at our department existed before and after 2018, so the above two periods were selected to be used for analysis on enrolled patients. The prescription information during hospitalization, including nursing, medication, laboratory examination, transference, surgical advice, etc. were compared with the current Standard Operating Procedure (SOP, including preoperative routine examinations, inspection, perioperative preventive antibiotic use, postoperative observational tests, inspection, routine nutritional support, prophylactic anticoagulation, and prophylactic inhibition of pancreatic enzymes, etc.) for gastric cancer at our department. Medical order beyond SOP was defined as medical order variation. Postoperative complication was diagnosed using the Clavien-Dindo classification criteria, which was divided into I, II, IIIa, IIIb, IVa, IVb, and V. Medical order variation and complication registration information were compared between the two periods, including consistence between medical order variation and complication registration, missing report, underestimation or overestimation of medical order variation, and registration rate of medical order variation [registration rate = (total number of patients-number of missing report patients)/total number of patients], severe complications (Clavien-Dindo classification ≥ III), medical order variation deviating from SOP and the corresponding inferred grading of complication. The data was organized using Microsoft Office Excel 2010. Results: A total of 177 gastric cancer patients were included in the analysis. The first period group and the second period group comprised 89 and 88 cases, respectively. The registrated complication rate was 23.6% (21/89) and 36.4% (32/88), and the incidence of severe complication was 2.2% (2/89) and 4.5% (4/88) in the first and the second period, respectively. The complication rate inferred from medical order variation was 74.2% (66/89) and 78.4% (69/88), and the incidence of severe complication was 7.9% (7/89) and 4.5% (4/88) in the first and second period, respectively. In the first and second period, the proportions of medical order variation in accordance with registered complication were 36.0% and 45.5% respectively; the proportion of underestimation, overestimation and missing report were 5.6% and 4.5%, 4.5% and 4.5%, 53.9% and 45.5%, respectively; the registration rate of medical order variation was 46.1% and 54.5%; the number of case with grade I complications inferred from medical order variation was 34 (38.2%) and 25 (28.4%), respectively; and the number of grade II was 12 (13.5%) and 15 cases (17.0%), respectively. The reason of the missing report of medical order variation corresponding to grade I complication was mainly the single use of analgesic drugs outside SOP, accounting for 76.5% (26/34) and 64.0% (16/25) in the first and second period respectively, and that corresponding to grade II complication was mainly the use of non-prophylactic antibiotics, accounting for 9/12 cases and 5/15 cases, respectively. Conclusions: Medical information can evaluate the morbidity of complication feasibly and effectively. Attention should be paid to routine registration to avoid specific missing report.


Assuntos
Adenocarcinoma/cirurgia , Gastrectomia/efeitos adversos , Registros Médicos/normas , Sistema de Registros/normas , Neoplasias Gástricas/cirurgia , Estudos de Viabilidade , Humanos , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/etiologia , Estudos Retrospectivos
7.
Qual Life Res ; 28(11): 2957-2967, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31399859

RESUMO

PURPOSE: Central cancer registries collect data and provide population-level statistics that can be tracked over time; yet registries may not capture the full range of clinically relevant outcomes. Patient-generated health data (PGHD) include health/treatment history, biometrics, and patient-reported outcomes (PROs). Collection of PGHD would broaden registry outcomes to better inform research, policy, and care. However, this is dependent on the willingness of patients to share such data. This study examines cancer survivors' perspectives about sharing PGHD with central cancer registries. METHODS: Three U.S. central registries sampled colorectal, non-Hodgkin lymphoma, and metastatic breast cancer survivors 1-4 years after diagnosis, recruiting them via mail to participate in one of seven focus groups (n = 52). Group discussions were recorded, transcribed, and thematically analyzed. RESULTS: Most survivor-participants were unaware of the existence of registries. After having registries explained, all participants expressed their willingness to share PGHD with them if treated confidentially. Participants were willing to provide information on a variety of topics (e.g., medical history, medications, symptoms, financial difficulties, quality of life, biometrics, nutrition, exercise, and mental health), with a focus on long-term effects of cancer and its treatment. Participants' preferred mode for providing data varied. Participants were also interested in receiving information from registries. CONCLUSIONS: Our results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management.


Assuntos
Sobreviventes de Câncer/psicologia , Coleta de Dados/métodos , Assistência à Saúde/métodos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Sistema de Registros/normas , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade
9.
Emergencias (Sant Vicenç dels Horts) ; 31(4): 227-233, ago. 2019. graf, tab
Artigo em Espanhol | IBECS | ID: ibc-182762

RESUMO

Objetivos: Este estudio analiza el control del ritmo en los servicios de urgencias (SUH) y sus resultados en pacientes con fibrilación auricular (FA) de reciente comienzo, para identificar áreas de mejora en el manejo. Método: Estudio multicéntrico, observacional, prospectivo y transversal desarrollado en 124 SUH representativos del sistema sanitario español basado en el registro HERMES-AF (estrategias de manejo en el servicio de urgencias hospitalario de la FA) del 23 de mayo al 5 de junio de 2011. Se incluyeron pacientes con FA sintomática con menos de 48 h de evolución en los cuales se tomó la decisión de restaurar el ritmo sinusal. Resultados: Se incluyeron 337 pacientes, se optó por cardioversión farmacológica en 311 pacientes (92,3%), y por cardioversión eléctrica en 52 (15%), la mitad de los casos tras fracaso de los fármacos. Se obtuvo ritmo sinusal (RS) en 278 pacientes (82,5%) y el alivio de los síntomas en 297 (94%), con una tasa de efectos adversos del 0,9%, ninguno grave. Amiodarona se asoció de manera independiente a una menor tasa de RS al alta (OR = 0,442; IC 95% 0,238-0,823; p = 0,01), al contrario que la cardioversión eléctrica (OR = 4,0; IC 95% 1,2-13,3; p = 0,024). Los fármacos I-C se asociaron con una mayor proporción de altas en < 6 h (OR 2,6; IC 95% 1,6-4,3; p < 0,001) y amiodarona con más estancias prolongadas de > 24 h (OR 2,7, IC 95% 1,5-4,8; p < 0,003). Conclusiones: En los SUH, la restauración del RS en la FA de reciente comienzo es segura, efectiva y asocia beneficios clínicos para los pacientes. Reemplazar amiodarona por técnicas más efectivas y rápidas como la cardioversión eléctrica o los fármacos I-C es un área de mejora de la calidad asistencial


Objectives: To analyze heart rate control in hospital emergency departments and outcomes in patients with recent onset atrial fibrillation (AF) so that targets for improvement can be identified. Methods: Multicenter, prospective observational cross-sectional study in a representative sample of 124 hospitals of the Spanish health services, based on records in the HERMES-AF database (Hospital Emergency Department Management Strategies for AF) for May 23 to June 5, 2011. Patients with symptomatic AF within 48 hours of onset were enrolled when the decision was made to attempt restoration of sinus rhythm. Results: We included 337 patients. Chemical cardioversion was used in 311 (92.3%) and electrical cardioversion in 52 (15%), after drugs had failed in half the cases. Sinus rhythm was restored in 278 patients (82.5%), and symptoms resolved in 94%. Adverse effects were recorded in 0.9% but none were serious. Amiodarone was independently associated with a lower rate of restored sinus rhythm (odds ratio [OR], 0.442; 95% CI, 0.238-0.823; P=.01) than electrical cardioversion (OR, 4.0; 95% CI, 1.2-13.3; P=.024). The use of class Ic antiarrhythmic agents was associated with a higher percentage of discharges in less than 6 hours (OR, 2.6; 95% CI, 1.6-4.3; P<.001), and amiodarone was associated with hospital stays longer than 24 hours (OR, 2.7; 95% CI, 1.5-4.8; P<.003). Conclusions: Emergency department restoration of sinus rhythm in patients with AF is safe, effective, and associated with clinical benefits. Quality of care could be improved by replacing the use of amiodarone with faster and more effective treatments such as electrical cardioversion or the use of class Ic agents


Assuntos
Humanos , Feminino , Pessoa de Meia-Idade , Cardioversão Elétrica/métodos , Fibrilação Atrial/diagnóstico , Fibrilação Atrial/terapia , Serviços Médicos de Emergência , Ritmo Circadiano/efeitos dos fármacos , Sistema de Registros/normas , Cardioversão Elétrica/tendências , Estudos Prospectivos , Estudos Transversais , Espanha , Antiarrítmicos/administração & dosagem , Sistemas de Saúde/organização & administração
10.
Emergencias (Sant Vicenç dels Horts) ; 31(4): 252-256, ago. 2019. graf, tab
Artigo em Espanhol | IBECS | ID: ibc-182766

RESUMO

Objetivo: La Comunidad de Madrid es líder en donación en asistolia no controlada (DANC) en España. El objetivo de este trabajo es analizar la rentabilidad de los órganos extraídos válidos de los donantes (categoría IIa) del Registro Nacional Integrado de Información de Donación y Trasplante de la ONT (Registro CORE), correspondientes a esta comunidad. Método: Estudio observacional retrospectivo entre 2007 y 2017 de las DANC, analizando las variables edad, talla, peso, índice de masa corporal (IMC), tiempos asistenciales, tipo de compresión torácica recibida durante la reanimación cardiopulmonar (cardiocompresor mecánico vs compresión torácica manual) y órganos extraídos válidos. Resultados: Se registraron 679 donantes, de los que fueron donantes efectivos el 67,6% (n = 458). Se observó una correlación negativa (−0,161) entre la mediana del índice de masa corporal y la mediana del número de órganos extraídos válidos (p < 0,001). También se observó una influencia estadísticamente significativa del tipo de cardiocompresión realizada y la viabilidad del hígado, puesto que solo los extraídos tras reanimación con cardiocompresión mecánica fueron válidos para trasplante. Conclusiones: El IMC y el uso de cardiocompresores mecánicos son variables predictoras a tener en cuenta ante una posible DANC


Background and objective: The Autonomous Community of Madrid procures the largest number of organs from uncontrolled non-heart-beating donors (NHBD) after circulatory death in Spain. The aim of this study was to analyze the yield of these donations in terms of viable organs procured (category IIa) according to information extracted from the CORE registry of the Spanish National Transplant Organization (ONT) for the Madrid area. Methods: Retrospective observational study of NHBD data registered between 2007 and 2017, including age, height, weight, body mass index (BMI), emergency care times, method of chest compressions applied (mechanical cardiopump vs manual compressions), and viable organs extracted. Results: A total of 679 circulatory death donors were registered; 458 (67.6%) of them were utilized donors. The median BMI correlated negatively (-0.161) with the number of viable organs extracted (P<.001). The method of applying chest compressions significantly influenced liver viability: only those extracted after mechanical cardiopump compressions were viable for transplantation. Type of compressions did not effect kidney or lung viability. Conclusion: Variables to bear in mind as predictors of success in NHBD donation are BMI and type of chest compressions applied


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Parada Cardíaca/epidemiologia , Obtenção de Tecidos e Órgãos/economia , Reanimação Cardiopulmonar , Estudos Retrospectivos , Peso-Estatura , Índice de Massa Corporal , Doadores de Tecidos/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , Sistema de Registros/normas
11.
Stud Health Technol Inform ; 262: 384-387, 2019 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-31349248

RESUMO

A National registry program is a resource intensive initiative involving multiple stakeholders, multi-institutional/multi-role/multi-users collaborative effort, where various aspects starting from work culture, research culture, registry conceptualization, resource availability, data format, data storage/retrieval techniques, data sharing protocols, data/dataset standards, data quality etc. vary drastically between different institutions. The biggest challenge for a national program will be to map these aspects under a common umbrella to establish standards for operations/execution, policies and procedures, which means aligning the registry operations with the operative process of each institution at first, due to this only a handful initiatives are implemented with limited success, hence it is advisable to study such implementations in great details as a guideline to build a solid foundation for future national initiatives[1][2]. The idea goes around building a solid database for holding all clinical registries under a single repository, along with streamlining and generalizing the policies and procedures for any disease or medical device registry, in order to save infrastructure spending, streamlining, saving on management and operational costs and overheads.


Assuntos
Confiabilidade dos Dados , Armazenamento e Recuperação da Informação , Sistema de Registros , Bases de Dados Factuais , Disseminação de Informação , Sistema de Registros/normas
12.
Dan Med J ; 66(6)2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31256775

RESUMO

INTRODUCTION: Acute Achilles tendon rupture is a severe injury causing functional deficits and sick leave. Data from the Danish Achilles tendon Database (DADB) can help us monitor and optimise treatment. The aim of this study was to investigate the completeness and data validity in the DADB. METHODS: The study was performed as a registry study comparing data in the DADB with data from patient records. Data were collected from three of 11 hospitals registered in the DADB. The study was conducted from 1 January to 31 December 2016. A completeness of 80% was considered satisfactory, and a parameter was valid if there was agreement between the DADB and the patient record in 80% of the cases. RESULTS: Overall, completeness was 77% (155/201); for the non-operated patients 81% (150/185) and the operated patients 31% (5/16). The seven investigated parameters all showed a validity of 83-100%. CONCLUSIONS: This study documented a satisfactory completeness of data on the non-operated patients registered in the DADB and an unsatisfactory completeness of data on operated patients. All investigated parameters were valid. These results suggest that data in the DADB on non-operated patients can contribute to research within the field. Due to a limited sample on operated patients, conclusions should be made with caution. The logistics concerning data collection among operated patients warrants optimisation. FUNDING: not relevant. TRIAL REGISTRATION: The study was approved by the Danish Data Protection Agency and the Danish Patient Safety Authority.


Assuntos
Tendão do Calcâneo/lesões , Sistema de Registros/normas , Traumatismos dos Tendões/terapia , Dinamarca , Humanos , Qualidade da Assistência à Saúde , Ruptura
14.
Medicina (Kaunas) ; 55(6)2019 Jun 25.
Artigo em Inglês | MEDLINE | ID: mdl-31242685

RESUMO

Background and objectives: The aim of our study is to validate the registration of knee arthroplasty revisions in the Lithuanian Arthroplasty Register (LAR) and thus give an indication of the accuracy of the published revision rates. Materials and methods: A total of 4269 primary total knee arthroplasties (TKAs) registered in the LAR between 2013 and 2015 were included. Two years after surgery the patients were contacted by phone in order to inquire if they had been subject to revision. The information from the patients was then cross checked against what had been registered in the LAR, and in case of a revision not having been registered hospital charts were investigated. Thus, the patients were followed up with regarding revision and/or death until 2017. A true revision was defined as an addition, exchange, or removal of one or all components. Results: Out of 4269 primary TKAs, we managed to contact and interview 2769 patients. Nine small hospitals were not able to provide contact details (telephone numbers) for 533 patients (549 knees). Sixty-seven patients (67 knees) were deceased (data from the Lithuanian National Census Register) and a further 438 patients (565 knees) appeared to have a wrong or non-valid telephone number, leaving 3031 (3091 knees) patients being contacted. Of those, 262 patients (266 knees) refused to participate in the study which left 2769 responders (2825 knees). Sixty-one patients said that reoperation had been performed on the index knee within two years of their primary surgery. After checking with the clinics, 10 were surgical procedures on the knee but not true revisions by our criteria. Out of the 51 true revisions we found that 46 were registered to the LAR as revised, while five (9.8%) revisions were missing. Conclusions: We conclude that the Lithuanian Arthroplasty Register has a good completeness of registered revision TKAs as only 9.8% of revisions were missing.


Assuntos
Artroplastia do Joelho/estatística & dados numéricos , Sistema de Registros/normas , Adulto , Idoso , Feminino , Humanos , Lituânia , Masculino , Pessoa de Meia-Idade , Sistema de Registros/estatística & dados numéricos , Reoperação/estatística & dados numéricos , Inquéritos e Questionários , Resultado do Tratamento
15.
Rev Epidemiol Sante Publique ; 67(4): 239-245, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31146902

RESUMO

BACKGROUND: Completeness, timeliness and accuracy are important qualities for registries. The objective was to estimate the completeness of the first two years of full registration (2008/2009) of a new population-based general cancer registry, at the time of national data centralisation. METHODS: Records followed international standards. Numbers of cases missed were estimated from a three-source (pathology labs, healthcare centres, health insurance services) capture-recapture method, using log-linear models for each gender. Age and place of residence were considered as potential variables of heterogeneous catchability. RESULTS: When data were centralized (2011/2012), 4446 cases in men and 3642 in women were recorded for 2008/2009 in the Registry. Overall completeness was estimated at 95.7% (95% CI: 94.3-97.2) for cases in men and 94.8% (95% CI: 92.6-97.0) in women. Completeness appeared higher for younger than for older subjects, with a significant difference of 4.1% (95% CI: 1.4-6.7) for men younger than 65 compared with their older counterparts. Estimates were collated with the number of cases registered in 2014 for the years 2008/2009 (4566 cases for men/3755 for women), when additional structures had notified cases retrospectively to the Registry. These numbers were consistent with the stratified capture-recapture estimates. CONCLUSION: This method appeared useful to estimate the completeness quantitatively. Despite a rather good completeness for the new Registry, the search for cases among older subjects must be improved.


Assuntos
Confiabilidade dos Dados , Coleta de Dados , Neoplasias/epidemiologia , Sistema de Registros/normas , Adulto , Fatores Etários , Idade de Início , Idoso , Idoso de 80 Anos ou mais , Coleta de Dados/métodos , Coleta de Dados/normas , Atestado de Óbito , Feminino , França/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Vigilância da População/métodos , Registros/normas , Registros/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , Estudos Retrospectivos
16.
Trials ; 20(1): 378, 2019 Jun 24.
Artigo em Inglês | MEDLINE | ID: mdl-31234923

RESUMO

BACKGROUND: Clinical trial registries have been established as a form of public accountability. Sponsors ought to register their trials promptly and accurately, but this is not always done. Some of the problems include non-registration of trials, registration of trials with incomplete information, and non-reporting of trial results on time. In this study we enumerate or quantify some quality issues with respect to Principal Investigator (PI) and Responsible Party data. METHODS: We analyzed interventional trials registered with ClinicalTrials.gov. Using certain selection criteria, we started with 112,013 records, and then applied further filters. The trial had to (a) start between 1 January 2005 and 31 December 2014, (b) include a "drug" or "biological" in the "intervention" field, (c) be registered with an American authority, and (d) list a real person's name as investigator and also his or her role in the study. RESULTS: We identified four categories of errors in the ClinicalTrials.gov records. First, some data were missing. The name of the investigator, or his or her role, was missing in 12% of 35,121 trials. In examining 71,359 pairs of names and roles, 17% of the "names" were found to be not those of real persons, but instead junk information. Second, there were variations in a large number of names. We identified 19 categories of variants. We determined that 13% of the names had variants that could not be resolved using a program. Third, some trials listed many PIs each, although only one such person holds overall responsibility for the trial and therefore not more than one person should be listed as PI. Fourth, in examining whether the PI's name was available as part of the Responsible Party tag, we found that in 1221 (3.5%) of 35,121 trials, the Responsible Party tag is absent. CONCLUSIONS: We have outlined four categories of problems with data hosted by ClinicalTrials.gov and have quantified three of them. We also suggest how these errors could be prevented in future. It is important to carry out various kinds of audits of trial registries, in order to identify lacunae in the records, that they be addressed.


Assuntos
Ensaios Clínicos como Assunto , Confiabilidade dos Dados , Sistema de Registros/normas , Humanos , Pesquisadores
17.
Mult Scler Relat Disord ; 33: 158-161, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31203146

RESUMO

BACKGROUND: As the prevalence and incidence of Multiple Sclerosis (MS) are increasing remarkably in Iran, gathering standardized information regarding the individual's diagnosis, care, and outcomes through a uniform registry system would enable policy-makers to systematically plan for care quality improvements. OBJECTIVE: To design a valid and reliable Persian version of a minimum data set to be utilized and integrated into the national MS registry system of Iran. METHOD: The minimum data set consisted of six domains including patient identification, family history of MS, diagnosis, disease course, disability status, and medications. The content validity was assessed based on 27 experts' opinions. Item-Content Validity Index (I-CVI) and Scale-Content Validity Index (S-CVI) were used to assess the questions and their validities. Reliability was evaluated using the intra-class correlation coefficient (ICC) of the test-retest results. RESULTS: For validity appraisal, 27 experts reviewed the developed minimum data set. All the items had I-CVI values higher than the critical value of 0.78 in terms of relevance, clarity, and simplicity, except for "medication start date" and "medication end date" in relevance (I-CVI = 0.75 and 0.73, respectively) and "MS type" in simplicity (I-CVI = 0.76). The total S-CVI scores for relevance, clarity, and simplicity were higher than 0.9. In reliability assessment, 27 patients (out of 74 interviewed patients) were re-interviewed to assess the test-retest reliability. All ICCs were higher than the critical value of 0.7 (in 14 items out of 16), except for "progression to secondary-progressive MS" with the ICC = 0.68 and "the reason for medication discontinuance" with the ICC = 0.64. CONCLUSION: The use of standardized validated minimum data set has the potential to enable the researchers and policy-makers to systematically compare and analyze patient information. The Persian version of the minimum data set found to be valid and reliable in Iran.


Assuntos
Conjuntos de Dados como Assunto/normas , Esclerose Múltipla , Sistema de Registros/normas , Humanos , Irã (Geográfico)/epidemiologia , Esclerose Múltipla/epidemiologia , Reprodutibilidade dos Testes
18.
Health Qual Life Outcomes ; 17(1): 106, 2019 Jun 20.
Artigo em Inglês | MEDLINE | ID: mdl-31221151

RESUMO

BACKGROUND: Clinical registries, which capture information about the health and healthcare use of patients with a health condition or treatment, often contain patient-reported outcomes (PROs) that provide insights about the patient's perspectives on their health. Missing data can affect the value of PRO data for healthcare decision-making. We compared the precision and bias of several missing data methods when estimating longitudinal change in PRO scores. METHODS: This research conducted analyses of clinical registry data and simulated data. Registry data were from a population-based regional joint replacement registry for Manitoba, Canada; the study cohort consisted of 5631 patients having total knee arthroplasty between 2009 and 2015. PROs were measured using the 12-item Short Form Survey, version 2 (SF-12v2) at pre- and post-operative occasions. The simulation cohort was a subset of 3000 patients from the study cohort with complete PRO information at both pre- and post-operative occasions. Linear mixed-effects models based on complete case analysis (CCA), maximum likelihood (ML) and multiple imputation (MI) without and with an auxiliary variable (MI-Aux) were used to estimate longitudinal change in PRO scores. In the simulated data, bias, root mean squared error (RMSE), and 95% confidence interval (CI) coverage and width were estimated under varying amounts and types of missing data. RESULTS: Three thousand two hundred thirty (57.4%) patients in the study cohort had complete data on the SF-12v2 at both occasions. In this cohort, mixed-effects models based on CCA resulted in substantially wider 95% CIs than models based on ML and MI methods. The latter two methods produced similar estimates and 95% CI widths. In the simulation cohort, when 50% of the data were missing, the MI-Aux method, in which a single hypothetical auxiliary variable was strongly correlated (i.e., 0.8) with the outcome, reduced the 95% CI width by up to 14% and bias and RMSE by up to 50 and 45%, respectively, when compared with the MI method. CONCLUSIONS: Missing data can substantially affect the precision of estimated change in PRO scores from clinical registry data. Inclusion of auxiliary information in MI models can increase precision and reduce bias, but identifying the optimal auxiliary variable(s) may be challenging.


Assuntos
Artroplastia do Joelho/psicologia , Viés , Confiabilidade dos Dados , Medidas de Resultados Relatados pelo Paciente , Sistema de Registros/normas , Idoso , Simulação por Computador , Feminino , Humanos , Modelos Lineares , Masculino , Manitoba , Pessoa de Meia-Idade , Estudos Retrospectivos
19.
BMC Public Health ; 19(1): 495, 2019 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-31046737

RESUMO

BACKGROUND: The National Breast Cancer Register (NBCR) of Sweden was launched in 2008 and is used for quality assurance, benchmarking, and research. Its three reporting forms encompass Notification, Adjuvant therapy and Follow-up. Target levels are set by national and international guidelines. This national validation assessed data quality of the register. METHODS: Data recorded through the Notification form were evaluated for completeness, timeliness, comparability and validity. Completeness was assessed by cross-linkage to the Swedish Cancer Register (SCR). Comparability was analyzed by comparing registration routines in NBCR with national and international guidelines. Timeliness was defined as the difference between the earliest date of diagnosis and the reporting date to NBCR. Validity was assessed by re-abstraction of medical chart data for 800 randomly selected patients diagnosed in 2013. RESULTS: The completeness of the NBCR was high with a coverage across regions and years (2010-2014) of 99.9%. Of all incident cases reported to the NBCR in 2013 (N = 8654), 98.5% were included within 12 months and differences between health regions were essentially negligible. Coding procedures followed guidelines and were uniformly adhered to. The proportion of missing values was < 5% for most variables and reported information generally had high exact agreement (> 90%). CONCLUSIONS: Completeness of data, comparability and agreement in the NBCR was high. For clinical quality purposes and benchmarking, improved timeliness is warranted. Assessment of validity has resulted in a thorough review of all variables included in the Notification form with clarifications and revision of selected variables.


Assuntos
Neoplasias da Mama/epidemiologia , Confiabilidade dos Dados , Controle de Qualidade , Sistema de Registros/normas , Adulto , Benchmarking , Neoplasias da Mama/diagnóstico , Feminino , Indicadores Básicos de Saúde , Humanos , Reprodutibilidade dos Testes , Suécia
20.
BMC Musculoskelet Disord ; 20(1): 197, 2019 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-31068172

RESUMO

BACKGROUND: A total of more than 270,000 fractures are registered in the Swedish Fracture Register (SFR), a national quality register. Fractures are classified following the AO/OTA classification, commonly by a junior doctor. As a step in the process of validating the data in the SFR, several studies of the accuracy of the fracture classification have already been published. The aim of this study was to evaluate the accuracy of femoral fracture classification in the SFR. METHODS: One hundred and eighteen femur fractures were randomly selected from the SFR. Three experienced orthopaedic surgeons individually classified these fractures on two separate occasions and a gold standard classification was established. This classification was compared with the original classification in the SFR. Inter- and intraobserver agreement was calculated. RESULTS: The agreement between the classification in the SFR and the gold standard classification was kappa = 0.65 for the AO/OTA group and kappa = 0.83 for the AO/OTA type. This corresponds to substantial and almost perfect agreement, according to Landis and Koch. The kappa values for interobserver agreement ranged from 0.64-0.76 for the AO/OTA group and 0.76-0.85 for the AO/OTA type. The kappa values for intraobserver agreement ranged from 0.79-0.81 for the AO/OTA group and 0.91-0.93 for the AO/OTA type. CONCLUSIONS: The classification of femoral fractures in the Swedish Fracture Register is substantial (AO/OTA group) to almost perfect (AO/OTA type) and as accurate as in previous studies. The present study also shows that the agreement between the SFR classification and a gold standard classification is in the same range of agreement as between experienced raters. In contrast to previous studies, the classifications in the SFR are made by an unselected group of mostly inexperienced classifiers. The results indicate that the fracture classification in a national quality register can be accurate enough to permit the evaluation of fracture treatment in specific groups of fractures.


Assuntos
Fraturas do Fêmur/classificação , Sistema de Registros/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Fraturas do Fêmur/diagnóstico , Humanos , Masculino , Pessoa de Meia-Idade , Variações Dependentes do Observador , Cirurgiões Ortopédicos/normas , Cirurgiões Ortopédicos/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , Reprodutibilidade dos Testes , Suécia , Adulto Jovem
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