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El análisis de un patrón puntual engloba una serie de técnicas que permiten estudiar la distribución de un conjunto de eventos ocurridos sobre una región del plano. Este problema surge en epidemiología cuando se investiga una potencial fuente de contaminación ambiental alrededor de la cual se sospecha que surgen casos de una determinada enfermedad. En el presente trabajo, se explica brevemente en qué consiste el análisis de un patrón puntual y se ilustra con una aplicación a la determinación del origen medioambiental y al estudio de las zonas de mayor riesgo de incidencia en un brote de neumonía por Legionella ocurrido entre mediados de septiembre y principios de octubre en la ciudad de Alcoi (Alicante). El estudio permitió confirmar el origen medioambiental del brote y señalar las zonas de la ciudad con mayor riesgo, convirtiéndose en el argumento básico para llevar a cabo una exhaustiva inspección de las instalaciones generadoras de aerosoles, tras la cual, hasta la fecha, cesaron los brotes epidémicos.

Objetivo: Valorar la descripción geoestadística realizada de los datos de gripe recogidos a través de la Red Centinela Sanitaria de la Comunidad Valenciana (RCSCV) mediante la utilización del método kriging con la finalidad de evaluar la posibilidad de su incorporación a la vigilancia rutinaria Método: Se han utilizado los datos de vigilancia de gripe de la RCSCV en tres temporadas gripales (1997-1998, 1998-1999 y 1999-2000), construyéndose una matriz de datos de incidencia de gripe geocodificada. La distribución geográfica fue estudiada mediante la técnica geoestadística kriging, que permite estimar la incidencia de la enfermedad en cualquier punto del territorio, a partir de la incidencia observada en unos pocos puntos estratégicamente distribuidos. Se elaboraron mapas de curvas de isoincidencia de gripe para cada semana. La valoración de la técnica se realizó mediante validación cruzada. Resultados: En la mayoría de las semanas, los valores tanto de la desviación estándar (DE) reducida, como de la media reducida estuvieron cercanos a los valores considerados óptimos (0 o 1, respectivamente), y sólo en la última temporada se obtuvieron valores de la DE reducida alejados de los considerados como de buen ajuste en 12 de las 20 semanas. La estimación de tasas en todas las temporadas demostró una coherencia en su distribución espacial. También se observó coherencia en la evolución temporal. Conclusiones: En la mayoría de las situaciones los resultados pueden considerarse aceptables, no requiere recursos informáticos extraordinarios ni un empleo de tiempo excesivo, y necesita tan sólo una adaptación anual. Su facilidad de uso lo hace apto para su utilización como una técnica de rutina, pese a que puede mejorarse la precisión de las estimaciones, incrementando la complejidad del modelo.

Objective: To estimate the association strength of dietary behaviour and sedentary habits in relation to childhood obesity in Spain.Design: A matched case-control study was carried out using data collected by sentinel network paediatricians in general practices.Setting: Five Spanish autonomous communities.Subjects: Cases were 437 children (2-14 years old) with BMI >95th percentile according to Spanish reference tables. Controls were 751 children (2-14 years old; two paired per case) with BMI <84th percentile. Data were collected in two phases: individual (questionnaires filled in by sentinel paediatricians) and family (self-administered questionnaires filled in a family environment). Crude OR and adjusted OR (ORc and adj OR) for the given variables were calculated using a simple and multiple conditional logistic regression analysis.Results: The factors with the greatest effect on obesity were family history of obesity: both parents (adj OR = 11.2), mother but not father (adj OR = 9.1), father but not mother (adj OR = 6.1), siblings (adj OR = 2.7); and eating between meals (adj OR = 2.5) and consumption of sweets and soft drinks >2 times/week (adj OR = 2.0). The highest protection effect was found for five meals per day (adj OR = 0.5), the regular consumption of breakfast (adj OR = 0.5) and for eating fruit for dessert (adj OR = 0.6). Factors related to sedentary habits did not appear as noteworthy.Conclusions: We have determined the association between certain dietary behaviour and family history with childhood obesity in several Spanish regions. [ABSTRACT FROM AUTHOR]

In this paper we analyse the renal transplant waiting list of the País Valencià in Spain, using Queueing theory. The customers of this queue are patients with end-stage renal failure waiting for a kidney transplant. We set up a simplified model to represent the flow of the customers through the system, and perform Bayesian inference to estimate parameters in the model. Finally, we consider several scenarios by tuning the estimations achieved and computationally simulate the behaviour of the queue under each one. The results indicate that the system could reach equilibrium at some point in the future and the model forecasts a slow decrease in the size of the waiting list in the short and middle term. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The Congenital Anomalies (CA) population-based registry of Valencian Region (RPACCV) has identified 11376 cases, live births (LB) and stillbirths (SB), between 2007-2018 with at least 1 major CA, diagnosed prenatally or up to 1 year old. The Folic acid supplementation (FAS) during the pregnancy is also registered. Aim: To identify differences in sociodemographic and clinical characteristics and in CA presentation, in cases from RPACCV according to prenatal FAS. Methods: A cross-sectional study was performed using the RPACCV to identify exposure to FAS (yes/no) in pregnancies with a born (LB and SB) with CA between 2007-2018. Pregnancies with unknown exposure were excluded. Percentages and their 95% confidence intervals (95%CI) of the sociodemographic and clinical characteristics of the cases were determined and compared according to pregnant exposure to FAS. Frequency and its 95%CI of the different CA groups were identified by exposure. Results: 14.1% of pregnancies (1602) were exposed to FAS and 10.4% (1182) were not, 75.5% were excluded. Statistically significant differences weren't found for sociodemographic and clinical characteristics according to exposure. In children of women exposed 1777 CA were identified and 2019 CA in those unexposed. Statistically significant differences were found in these CA groups (shown as % in the exposed/% in the unexposed): Heart defects (7.1%/52.7%), Respiratory (0.2%/ 1.2%), Digestive (2.3%/5.3%), Genital (2.5%/4.8%), Urinary (3.9%/9.3%), Limb (6.8%/9.4%), Oro-facial clefts (25.4%/ 2.8%), Eyes, Ears, Face and Neck (3.8%/1.2%). Conclusions: Several studies identified that FAS prevents from some CA. The fact that in only 25% of pregnant women there is information about FAS, highlight the difficulties of its registration in the clinical documentation. However, with the available information, it was identified that children of unexposed pregnant women presented more CA and from groups with a higher impact on morbidity and mortality. Key messages: In Spain, Folic acid supplementation doesn't require a prescription and, as its use is customary prior and during pregnancy, it doesn't seem to be considered as significant drug exposure in pregnancy. Differences between pregnancies exposed and unexposed to folic acid supplementation were found regarding the number of congenital anomalies presented in their children and its severity. [ABSTRACT FROM AUTHOR]

Background: Huntington Disease (HD) is a rare neurodegenerative disorder of the central nervous system characterized by involuntary choreic movements and behavioural/psychiatric disorders, which compromises the quality of life. Objective: To identify the distribution of HD by sex, age and province in the Valencian Region (VR) and to determine its prevalence and mortality rate. Methods: A cross-sectional epidemiological study was performed. HD’s cases between 2010-2018 were identified from the Rare Disease Information System of the VR by selecting codes 333.4 (ICD9) and G10 (ICD10). A descriptive analysis was performed by country of birth, province of residence and sex. Median ages at diagnosis and at death, with interquartile range (IQR), and prevalence and mortality rate, with 95% confidence intervals (95%CI), were obtained. Results: 225 cases were identified: 50.2% women, 52.0% residents in the southernmost province, 92.9% born in Spain and 68.9% confirmed by clinical manifestations. Median age at diagnosis was 54.1 years (IQR:41.1-66.1): 54.7 (IQR:41.2-66.1) in men and 53.0 (IQR:40.5-65.8) in women. Prevalence in 2018 was 2.0/100000 inhabitants (95%CI:0.4-2.4), being higher in women [2.2 (95%CI:0.3-2.8)] than in men [1.8 (95%CI:0.3- 2.3)]. Even an increasing trend was observed, significant differences weren’t found. 49.8% of cases died during the study, being 51.8% men. The median age at death was 62.7 years (IQR:51.1-74.2), 61.1 (IQR:48.7-72.5) in men and 66.6 (IQR:53.3-76.8) in women. The mortality rate in 2018 in both sexes was 0.3/100000 inhabitants (95%CI:0.3-2.3), significant differences weren’t found. Conclusions: Most of confirmations at registry level were based on clinical manifestations, reinforcing that HD has a characteristic pattern of symptoms although most are unspecific. The slight difference between sexes in the median age of diagnosis was significantly increased in the age of death, with men being the group with the highest mortality and an earlier death. Key messages: In the Valencian Region of Spain, men with Huntington Disease have a higher mortality rate and a lower median age at death (5.5 years earlier) than women. There is a pattern of symptoms which is characteristic of Huntington Disease, although most of them are unspecific. [ABSTRACT FROM AUTHOR]

Abstract Background The Comunitat Valenciana (CV) is a tourist region on the Mediterranean coast of Spain with a high rate of retirement migration. Lung cancer in women is the cancer mortality cause that has increased most in the CV during the period 1991 to 2000. Moreover, the geographical distribution of risk from this cause in the CV has been previously described and a non-homogenous pattern was determined. The present paper studies the spatio-temporal distribution of lung cancer mortality for women in the CV during the period 1987–2004, in order to gain some insight into the factors, such as migration, that have had an influence on these changes. Methods A novel methodology, consisting of a Bayesian hierarchical model, is used in this paper. Such a model allows the handling of data with a very high disaggregation, while at the same time taking advantage of its spatial and temporal structure. Results The spatio-temporal pattern which was found points to geographical differences in the time trends of risk. In fact, the southern coastal side of the CV has had a higher increase in risk, coinciding with the settlement of a large foreign community in that area, mainly comprised of elderly people from the European Union. Conclusion Migration has frequently been ignored as a risk factor in the description of the geographical risk of lung cancer and it is suggested that this factor should be considered, especially in tourist regions. The temporal component in disease mapping provides a more accurate depiction of risk factors acting on the population.

Background Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. Aim To compare the prevalence of GP-patient end-of-life treatment discussions and patient surrogate appointments in Italy, Spain, Belgium and the Netherlands and examine associated factors. Methods A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last 3 months of life of patients who died non-suddenly. Prevalences were estimated and between country differences, and country-specific associated patient and care factors, were examined using logistic regressions. Results 4396 non-sudden deaths were included. GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient diagnosis discussions, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments. The single most important factor was prior GP-patient diagnosis discussion. Discussion The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern European countries. Conclusion Delaying diagnosis discussions impedes anticipatory planning, whereas early discussions for all patients, particularly those with cognitive decline, and palliative care provision support patients' participation in decision-making. [ABSTRACT FROM AUTHOR]

Background: The Comunitat Valenciana (CV) is a tourist region on the Mediterranean coast of Spain with a high rate of retirement migration. Lung cancer in women is the cancer mortality cause that has increased most in the CV during the period 1991 to 2000. Moreover, the geographical distribution of risk from this cause in the CV has been previously described and a non-homogenous pattern was determined. The present paper studies the spatio-temporal distribution of lung cancer mortality for women in the CV during the period 1987-2004, in order to gain some insight into the factors, such as migration, that have had an influence on these changes.Methods: A novel methodology, consisting of a Bayesian hierarchical model, is used in this paper. Such a model allows the handling of data with a very high disaggregation, while at the same time taking advantage of its spatial and temporal structure.Results: The spatio-temporal pattern which was found points to geographical differences in the time trends of risk. In fact, the southern coastal side of the CV has had a higher increase in risk, coinciding with the settlement of a large foreign community in that area, mainly comprised of elderly people from the European Union.Conclusion: Migration has frequently been ignored as a risk factor in the description of the geographical risk of lung cancer and it is suggested that this factor should be considered, especially in tourist regions. The temporal component in disease mapping provides a more accurate depiction of risk factors acting on the population. [ABSTRACT FROM AUTHOR]

This study describes the inequalities in preventable avoidable mortality in relation to socioeconomic levels and analyses their evolution during the period 1996-2003 in the cities of Alicante, Castellon and Valencia. Four causes of preventable avoidable mortality were analysed according to sex: malignant tumour of the trachea, bronchus and lung, cirrhosis and other chronic diseases of the liver, motor vehicle accidents and AIDS, which had caused the death of non-institutionalised residents in the three cities during the period 1996-2003. The different census tracts were grouped into three socioeconomic levels. In general, socioeconomic inequalities in preventable avoidable mortality remain constant in time, except the ones caused by AIDS in Valencia, where they increase for men. Some census tracts in the three cities where the study was carried out were found to have significantly higher preventable mortality rates, and therefore require intervention. [ABSTRACT FROM AUTHOR]

Background: Despite concerns about worsening pregnancy outcomes resulting from healthcare restrictions, economic difficulties and increased stress during the COVID-19 pandemic, preterm birth (PTB) rates declined in some countries in 2020, while stillbirth rates appeared stable. Like other shocks, the pandemic may have exacerbated existing socioeconomic disparities in pregnancy, but this remains to be established. Our objective was to investigate changes in PTB and stillbirth by socioeconomic status (SES) in European countries., Methods: The Euro-Peristat network implemented this study within the Population Health Information Research Infrastructure (PHIRI) project. A common data model was developed to collect aggregated tables from routine birth data for 2015-2020. SES was based on mother's educational level or area-level deprivation/maternal occupation if education was unavailable and harmonized into low, medium and high SES. Country-specific relative risks (RRs) of PTB and stillbirth for March to December 2020, adjusted for linear trends from 2015 to 2019, by SES group were pooled using random effects meta-analysis., Results: Twenty-one countries provided data on perinatal outcomes by SES. PTB declined by an average 4% in 2020 {pooled RR: 0.96 [95% confidence intervals (CIs): 0.94-0.97]} with similar estimates across all SES groups. Stillbirths rose by 5% [RR: 1.05 (95% CI: 0.99-1.10)], with increases of between 3 and 6% across the three SES groups, with overlapping confidence limits., Conclusions: PTB decreases were similar regardless of SES group, while stillbirth rates rose without marked differences between groups., (© The Author(s) 2024. Published by Oxford University Press on behalf of the European Public Health Association.)

Background: Estimates of rare disease (RD) population impact in terms of number of affected patients and accurate disease definition is hampered by their under-representation in current coding systems. This study tested the use of a specific RD codification system (ORPHAcodes) in five European countries/regions (Czech Republic, Malta, Romania, Spain, Veneto region-Italy) across different data sources over the period January 2019-September 2021., Results: Overall, 3133 ORPHAcodes were used to describe RD diagnoses, mainly corresponding to the disease/subtype of disease aggregation level of the Orphanet classification (82.2%). More than half of the ORPHAcodes (53.6%) described diseases having a very low prevalence (< 1 case per million), and most commonly captured rare developmental defects during embryogenesis (31.3%) and rare neurological diseases (17.6%). ORPHAcodes described disease entities more precisely than corresponding ICD-10 codes in 83.4% of cases., Conclusions: ORPHAcodes were found to be a versatile resource for the coding of RD, able to assure easiness of use and inter-country comparability across population and hospital databases. Future research on the impact of ORPHAcoding as to the impact of numbers of RD patients with improved coding in health information systems is needed to inform on the real magnitude of this public health issue., (© 2023. Institut National de la Santé et de la Recherche Médicale (INSERM).)

Introduction: Huntington disease (HD) is a rare neurodegenerative disorder of the central nervous system characterized by unwanted choreatic movements, behavioral and psychiatric disturbances and dementia., Objective: Describe the geographical, age and sex distribution of HD in the Valencia Region (VR) and determine its prevalence and mortality., Materials and Methods: Cross-sectional study for the period 2010-2018. Confirmed cases of HD were identified through the Rare Disease Information System of the VR. Sociodemographic characteristics were described, and the prevalence and mortality rate were obtained., Results: 225 cases were identified, 50.2% women. 52.0% lived in the province of Alicante. 68.9% were verified by their clinical diagnosis. The median age at diagnosis was 54.1 years, 54.7 years in men and 53.0 years in women. The prevalence in 2018 was 1.97/100,000 inhabitants (95%; CI: 0.39-2.37), showing a no significant increasing trend, overall and by sex. 49.8% died, 51.8% men. The median age at death was 62.7 years, being lower in men than in women. The mortality rate in 2018 was 0.32/100,000 inhabitants (95%; CI: 0.32-2.28), with no statistically significant differences., Conclusions: The prevalence obtained was within the range estimated by Orphanet (1-9/100,000). A difference between sexes was observed in the diagnosis age. Men are the group with the highest mortality and the earliest age of death. It is a disease with high mortality with an average of 6.5 years between diagnosis and death.

Background: Congenital anomalies (CAs) increase the risk of death during infancy and childhood. This study aimed to evaluate the accuracy of using death certificates to estimate the burden of CAs on mortality for children under 10 years old., Methods: Children born alive with a major CA between 1 January 1995 and 31 December 2014, from 13 population-based European CA registries were linked to mortality records up to their 10th birthday or 31 December 2015, whichever was earlier., Results: In total 4199 neonatal, 2100 postneonatal and 1087 deaths in children aged 1-9 years were reported. The underlying cause of death was a CA in 71% (95% CI 64% to 78%) of neonatal and 68% (95% CI 61% to 74%) of postneonatal infant deaths. For neonatal deaths the proportions varied by registry from 45% to 89% and by anomaly from 53% for Down syndrome to 94% for tetralogy of Fallot. In children aged 1-9, 49% (95% CI 42% to 57%) were attributed to a CA. Comparing mortality in children with anomalies to population mortality predicts that over 90% of all deaths at all ages are attributable to the anomalies. The specific CA was often not reported on the death certificate, even for lethal anomalies such as trisomy 13 (only 80% included the code for trisomy 13)., Conclusions: Data on the underlying cause of death from death certificates alone are not sufficient to evaluate the burden of CAs on infant and childhood mortality across countries and over time. Linked data from CA registries and death certificates are necessary for obtaining accurate estimates., Competing Interests: Competing interests: None., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Families with rare diseases (RDs) have unmet needs that are often overlooked by health professionals. Describing these needs and the impact of the disease could improve their medical care. A total of 163 surveys were obtained from patients visiting primary care centres in the Valencian Region (Spain), during 2015-2017, with a confirmed or suspected diagnosis of RD. Of the 84.7% with a confirmed diagnosis, 50.4% had a diagnostic delay exceeding one year, and it was more prevalent among adults (62.2%). Families with paediatric patients were in a worse economic situation, with lower incomes and higher monthly disease-related expenses (€300 on average). These expenses were incurred by 66.5% of families and were mainly for medication (40.3%). Among them, 58.5% reported not being able to afford adjuvant therapies. The disease had an impact on 73.1% of families, especially on their routine and emotional state. Expenses, needs, and impacts were more frequent among families of patients with a history of hospitalisation or deterioration. Patients with delayed diagnosis had a higher consumption of drugs prior to diagnosis. People affected by RDs in the Valencian Region need therapies to improve their autonomy and emotional state. Health professionals should be aware of these needs.

Rationale & Objective: There is a dearth of data characterizing patients receiving kidney replacement therapy (KRT) for kidney failure due to systemic lupus erythematosus (SLE) and their clinical outcomes. The aim of this study was to describe trends in incidence and prevalence of KRT among these patients as well as to compare their outcomes versus those of patients treated with KRT for diseases other than SLE., Study Design: Retrospective cohort study based on kidney registry data., Setting & Participants: Patients recorded in 14 registries of patients receiving KRT that provided data to the European Renal Association Registry between 1992 and 2016., Predictor: SLE as cause of kidney failure., Outcomes: Incidence and prevalence of KRT, patient survival while receiving KRT, patient and graft survival after kidney transplant, and specific causes of death., Analytical Approach: Kaplan-Meier methods and Cox regression models were fit to compare patient survival between the SLE and non-SLE groups, overall KRT, dialysis, and patient and graft survival after kidney transplant., Results: In total, 1,826 patients commenced KRT for kidney failure due to SLE, representing an incidence of 0.80 per million population (pmp) per year. The incidence remained stable during the study period (annual percent change, 0.1% [95% CI, -0.6% to 0.8%]). Patient survival among patients with SLE receiving KRT was similar to survival in the comparator group (hazard ratio [HR], 1.11 [95% CI, 0.99-1.23]). After kidney transplant, the risk of death was greater among patients with SLE than among patients in the comparator group (HR, 1.25 [95% CI, 1.02-1.53]), whereas the risk of all-cause graft failure was similar (HR, 1.09 [95% CI, 0.95-1.27]). Ten-year patient overall survival during KRT and patient and graft survival after kidney transplant improved over the study period (HRs of 0.71 [95% CI, 0.56-0.91], 0.43 [95% CI, 0.27-0.69], and 0.60 [95% CI, 0.43-0.84], respectively). Patients with SLE receiving KRT were significantly more likely to die of infections (24.8%) than patients in the comparator group (16.9%; P < 0.001)., Limitations: No data were available on extrarenal manifestations of SLE, drug treatments, comorbidities, kidney transplant characteristics, or relapses of SLE., Conclusions: The prognosis of patients with SLE receiving KRT has improved over time. Survival of patients with SLE who required KRT was similar compared with patients who required KRT for other causes of kidney failure. Survival following kidney transplants was worse among patients with SLE., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Stillbirth is a major public health problem, but measurement remains a challenge even in high-income countries. We compared routine stillbirth statistics in Europe reported by Eurostat with data from the Euro-Peristat research network., Methods: We used data on stillbirths in 2015 from both sources for 31 European countries. Stillbirth rates per 1000 total births were analyzed by gestational age (GA) and birthweight groups. Information on termination of pregnancy at ≥22 weeks' GA was analyzed separately., Results: Routinely collected stillbirth rates were higher than those reported by the research network. For stillbirths with a birthweight ≥500 g, the difference between the mean rates of the countries for Eurostat and Euro-Peristat data was 22% [4.4/1000, versus 3.5/1000, mean difference 0.9 with 95% confidence interval (CI) 0.8-1.0]. When using a birthweight threshold of 1000 g, this difference was smaller, 12% (2.9/1000, versus 2.5/1000, mean difference 0.4 with 95% CI 0.3-0.5), but substantial differences remained for individual countries. In Euro-Peristat, missing data on birthweight ranged from 0% to 29% (average 5.0%) and were higher than missing data for GA (0-23%, average 1.8%)., Conclusions: Routine stillbirth data for European countries in international databases are not comparable and should not be used for benchmarking or surveillance without careful verification with other sources. Recommendations for improvement include using a cut-off based on GA, excluding late terminations of pregnancy and linking multiple sources to improve the quality of national databases., (© The Author(s) 2022. Published by Oxford University Press on behalf of the European Public Health Association.)

Objectives: To investigate the survival up to age 10 for children born alive with a major congenital anomaly (CA)., Methods: This population-based linked cohort study (EUROlinkCAT) linked data on live births from 2005 to 2014 from 13 European CA registries with mortality data. Pooled Kaplan-Meier survival estimates up to age 10 were calculated for these children (77 054 children with isolated structural anomalies and 4011 children with Down syndrome)., Results: The highest mortality of children with isolated structural CAs was within infancy, with survival of 97.3% (95% confidence interval [CI]: 96.6%-98.1%) and 96.9% (95% CI: 96.0%-97.7%) at age 1 and 10, respectively. The 10-year survival exceeded 90% for the majority of specific CAs (27 of 32), with considerable variations between CAs of different severity. Survival of children with a specific isolated anomaly was higher than in all children with the same anomaly when those with associated anomalies were included. For children with Down syndrome, the 10-year survival was significantly higher for those without associated cardiac or digestive system anomalies (97.6%; 95% CI: 96.5%-98.7%) compared with children with Down syndrome associated with a cardiac anomaly (92.3%; 95% CI: 89.4%-95.3%), digestive system anomaly (92.8%; 95% CI: 87.7%-98.2%), or both (88.6%; 95% CI: 83.2%-94.3%)., Conclusions: Ten-year survival of children born with congenital anomalies in Western Europe from 2005 to 2014 was relatively high. Reliable information on long-term survival of children born with specific CAs is of major importance for parents of these children and for the health care professionals involved in their care., Competing Interests: CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose.

Background: Data on renal replacement therapy (RRT) for end-stage renal disease were collected by the European Renal Association (ERA) Registry via national and regional renal registries in Europe and countries bordering the Mediterranean Sea. This article provides a summary of the 2019 ERA Registry Annual Report, including data from 34 countries and additional age comparisons., Methods: Individual patient data for 2019 were provided by 35 registries and aggregated data by 17 registries. Using these data, the incidence and prevalence of RRT, the kidney transplantation activity and the survival probabilities were calculated., Results: In 2019, a general population of 680.8 million people was covered by the ERA Registry. Overall, the incidence of RRT was 132 per million population (p.m.p.). Of these patients, 62% were men, 54% were ≥65 years of age and 21% had diabetes mellitus as primary renal disease (PRD), and 84% had haemodialysis (HD), 11% had peritoneal dialysis (PD) and 5% had pre-emptive kidney transplantation as an initial treatment modality. The overall prevalence of RRT on 31 December 2019 was 893 p.m.p., with 58% of patients on HD, 5% on PD and 37% living with a kidney transplant. The overall kidney transplant rate was 35 p.m.p. and 29% of the kidney grafts were from a living donor. The unadjusted 5-year survival probability was 42.3% for patients commencing dialysis, 86.6% for recipients of deceased donor grafts and 94.4% for recipients of living donor grafts in the period 2010-14. When comparing age categories, there were substantial differences in the distribution of PRD, treatment modality and kidney donor type, and in the survival probabilities., (© The Author(s) 2021. Published by Oxford University Press on behalf of the ERA.)

EUROCAT is a European network of population-based congenital anomaly (CA) registries. Twenty-one registries agreed to participate in the EUROlinkCAT study to determine if reliable information on the survival of children born with a major CA between 1995 and 2014 can be obtained through linkage to national vital statistics or mortality records. Live birth children with a CA could be linked using personal identifiers to either their national vital statistics (including birth records, death records, hospital records) or to mortality records only, depending on the data available within each region. In total, 18 of 21 registries with data on 192,862 children born with congenital anomalies participated in the study. One registry was unable to get ethical approval to participate and linkage was not possible for two registries due to local reasons. Eleven registries linked to vital statistics and seven registries linked to mortality records only; one of the latter only had identification numbers for 78% of cases, hence it was excluded from further analysis. For registries linking to vital statistics: six linked over 95% of their cases for all years and five were unable to link at least 85% of all live born CA children in the earlier years of the study. No estimate of linkage success could be calculated for registries linking to mortality records. Irrespective of linkage method, deaths that occurred during the first week of life were over three times less likely to be linked compared to deaths occurring after the first week of life. Linkage to vital statistics can provide accurate estimates of survival of children with CAs in some European countries. Bias arises when linkage is not successful, as early neonatal deaths were less likely to be linked. Linkage to mortality records only cannot be recommended, as linkage quality, and hence bias, cannot be assessed., Competing Interests: The authors have declared that no competing interests exist.

Background: The European Renal Association - European Dialysis and Transplant Association (ERA-EDTA) Registry collects data on kidney replacement therapy (KRT) via national and regional renal registries in Europe and countries bordering the Mediterranean Sea. This article summarizes the 2018 ERA-EDTA Registry Annual Report, and describes the epidemiology of KRT for kidney failure in 34 countries., Methods: Individual patient data on patients undergoing KRT in 2018 were provided by 34 national or regional renal registries and aggregated data by 17 registries. The incidence and prevalence of KRT, the kidney transplantation activity and the survival probabilities of these patients were calculated., Results: In 2018, the ERA-EDTA Registry covered a general population of 636 million people. Overall, the incidence of KRT for kidney failure was 129 per million population (p.m.p.), 62% of patients were men, 51% were ≥65 years of age and 20% had diabetes mellitus as cause of kidney failure. Treatment modality at the onset of KRT was haemodialysis (HD) for 84%, peritoneal dialysis (PD) for 11% and pre-emptive kidney transplantation for 5% of patients. On 31 December 2018, the prevalence of KRT was 897 p.m.p., with 57% of patients on HD, 5% on PD and 38% living with a kidney transplant. The transplant rate in 2018 was 35 p.m.p.: 68% received a kidney from a deceased donor, 30% from a living donor and for 2% the donor source was unknown. For patients commencing dialysis during 2009-13, the unadjusted 5-year survival probability was 42.6%. For patients receiving a kidney transplant within this period, the unadjusted 5-year survival probability was 86.6% for recipients of deceased donor grafts and 93.9% for recipients of living donor grafts., (© The Author(s) 2020. Published by Oxford University Press on behalf of ERA-EDTA.)

Objective: Methadone is a vital treatment for women with opioid use disorder in pregnancy. Previous reports suggested an association between methadone exposure and Pierre Robin sequence (PRS), a rare craniofacial anomaly. We assessed the association between gestational methadone exposure and PRS., Design/setting: This case-malformed control study used European Surveillance of Congenital Anomalies population-based registries in Ireland, the Netherlands, Italy, Switzerland, Croatia, Malta, Portugal, Germany, Wales, Norway and Spain, 1995-2011., Patients: Cases included PRS based on International Classification of Disease (ICD), Ninth Edition-British Paediatric Association (BPA) code 75 603 or ICD, Tenth Edition-BPA code Q8708. Malformed controls were all non-PRS anomalies, excluding genetic conditions, among live births, fetal deaths from 20 weeks' gestation and terminations of pregnancy for fetal anomalies. An exploratory analysis assessed the association between methadone exposure and other congenital anomalies (CAs) excluding PRS. Methadone exposure was ascertained from medical records and maternal interview., Results: Among 87 979 CA registrations, there were 127 methadone-exposed pregnancies and 336 PRS cases. There was an association between methadone exposure and PRS (OR adjusted for registry 12.3, 95% CI 5.7 to 26.8). In absolute terms, this association reflects a risk increase from approximately 1-12 cases per 10 000 births. A raised OR was found for cleft palate (adjusted OR 5.0, 95% CI 2.7 to 9.2)., Conclusions: These findings suggest that gestational methadone exposure is associated with PRS. The association may be explained by unmeasured confounding factors. The small increased risk of PRS in itself does not alter the risk-benefit balance for gestational methadone use. The association with cleft palate, a more common CA, should be assessed with independent data., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To estimate the prevalence of patients with oral anticoagulant therapy (OAT) in the Region of Valencia and to evaluate the quality of management of OAT with vitaminK antagonists (VKA) carried out in primary healthcare., Design: Observational cross-sectional study conducted through the Health Sentinel Network of the Region of Valencia, which includes a survey and the retrospective analysis of OAT monitoring., Setting: Primary healthcare, Region of Valencia, Spain., Subjects: All patients aged 18years or older on OAT who consulted during the year 2014. The population covered by the 59 doctors of the Health Sentinel Network constitutes 2.2% of the adult population of the Region of Valencia, and it is representative of it., Key Measurements: Demographic, socioeconomic and health data as well as information concerning OAT. Quality of OAT management with VKA was assessed by means of the percentage of time in therapeutic range (TTR), computed using the Rosendaal method., Results: A total of 1,144 patients were recorded (mean age 74.5±11 years; 49.7% women). Prevalence of OAT in the Region of Valencia is 1.3 cases per 100 population. The characteristic profile of these patients is an old person, with several comorbidities and a low level of education, who lives accompanied. Atrial fibrillation is the most common indication. 82.8% of patients on OAT with VKA were monitored in primary healthcare. The average TTR was 65.0%, and 53.9% of patients had a TTR ≥65%. Among inadequately controlled patients, 74.4% were perceived as well-controlled by their primary care doctor., Conclusions: Prevalence of OAT is high, and it is expected to increase. The degree of control achieved meets the generally accepted quality standard (mean TTR ≥65%), and it is comparable to that observed in other national and international studies. However, there is wide scope for improvement. It is crucial to optimize the management of this therapy in the most effective and cost-effective way. Among other measures, access of physicians to their patients' clinical information should be improved., (Copyright © 2017 Elsevier España, S.L.U. All rights reserved.)

Objective: To assess the variability in data distributions among data sources and over time through a case study of a large multisite repository as a systematic approach to data quality (DQ)., Materials and Methods: Novel probabilistic DQ control methods based on information theory and geometry are applied to the Public Health Mortality Registry of the Region of Valencia, Spain, with 512 143 entries from 2000 to 2012, disaggregated into 24 health departments. The methods provide DQ metrics and exploratory visualizations for (1) assessing the variability among multiple sources and (2) monitoring and exploring changes with time. The methods are suited to big data and multitype, multivariate, and multimodal data., Results: The repository was partitioned into 2 probabilistically separated temporal subgroups following a change in the Spanish National Death Certificate in 2009. Punctual temporal anomalies were noticed due to a punctual increment in the missing data, along with outlying and clustered health departments due to differences in populations or in practices., Discussion: Changes in protocols, differences in populations, biased practices, or other systematic DQ problems affected data variability. Even if semantic and integration aspects are addressed in data sharing infrastructures, probabilistic variability may still be present. Solutions include fixing or excluding data and analyzing different sites or time periods separately. A systematic approach to assessing temporal and multisite variability is proposed., Conclusion: Multisite and temporal variability in data distributions affects DQ, hindering data reuse, and an assessment of such variability should be a part of systematic DQ procedures., (© The Author 2016. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For Permissions, please email: journals.permissions@oup.com.)

Background: Patient registries (PRs) are important tools for public-health surveillance and rare-disease research. The purpose of this study is to identify the most important criteria for the creation of a rare-disease PR that could be used by public-health authorities to develop health policies., Methods: A consensus-development Delphi study was used, with participants selected for their expertize in rare diseases and registries. Participants were asked to complete a questionnaire on the most important criteria for creating PRs. Three rounds were performed., Results: Agreement was reached on half the questions in the first round and on 89% of questions in the final round, with a total expert participation rate of around 60% by the final stage. This study made it possible to reach a broader consensus starting from experts' initial assessment of the features that should be considered for the creation of a rare-disease PR., Conclusion: The consensus method used made it possible to define the characteristics of a PR based on expert opinion within a rare-disease framework. This study may serve as a guide for helping other researchers plan and build a rare-disease PR., (© The Author 2015. Published by Oxford University Press on behalf of Faculty of Public Health. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background: This study examines the time trends in incidence, prevalence, patient and kidney allograft survival and causes of death (COD) in patients receiving renal replacement therapy (RRT) in Europe., Methods: Eighteen national or regional renal registries providing data to the European Renal Association-European Dialysis and Transplant Association Registry between 1998 and 2011 were included. Incidence and prevalence time trends between 2001 and 2011 were studied with Joinpoint and Poisson regression. Patient and kidney allograft survival and COD between 1998 and 2011 were analysed using Kaplan-Meier and competing risk methods and Cox regression., Results: From 2001 to 2008, the adjusted incidence of RRT rose by 1.1% (95% CI: 0.6, 1.7) annually to 131 per million population (pmp). During 2008-2011, the adjusted incidence fell by 2.2% (95% CI: -4.2, -0.2) annually to 125 pmp. This decline occurred predominantly in patients aged 45-64 years, 65-74 years and in the primary renal diseases diabetes mellitus type 1 and 2, renovascular disease and glomerulonephritis. Between 2001 and 2011, the overall adjusted prevalence increased from 724 to 1032 pmp (+3.3% annually, 95% CI: 2.8, 3.8). The adjusted 5-year patient survival on RRT improved between 1998-2002 and 2003-2007 [adjusted hazard ratio (HRa) 0.85, 95% CI: 0.84, 0.86]. Comparing these time periods, the risk of cardiovascular deaths fell by 25% (HRa 0.75, 95% CI: 0.74, 0.77). However the risk of malignant death rose by 9% (HRa 1.09, 95% CI: 1.03, 1.16) in patients ≥65 years., Conclusion: This European study shows a declining RRT incidence, particularly in patients aged 45-64 years, 65-74 years and secondary to diabetic nephropathy. Encouragingly, the adjusted RRT patient survival continues to improve. The risk of cardiovascular death has decreased, though the risk of death from malignancy has increased in the older population., (© The Author 2015. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.)

The aims of this study were to determine the incidence of malignant salivary gland tumors (MSGTs) in a specific in Spanish Mediterranean population, evaluate oncological outcomes, and identify prognostic factors for survival. Overall survival and disease-free survival rates were calculated for 23 patients with MSGTs who were treated in our department during 2004-2012. In the recruitment population of the reference hospital, annual incidence per 100,000 inhabitants was estimated, with corresponding 95% confidence intervals (CIs). The mean annual incidence of MSGTs was 0.91 new cases per 100,000 inhabitants (95% CI, 0.14-2.83). The most common histological type was squamous cell carcinoma (34.8%). Overall survival ranged from 2 to 120 months (mean 70.5 months). The 5-year overall survival rate was 52.5%, and the 5-year disease-free survival rate was 50%. The mean disease-free interval was 73.9 months (95% CI 47.1-100.7). Metastatic spread, tumor stage, perineural invasion, a submaxillary location, tumor size, histological grade, positive lymph node status, and presence of positive surgical resection margins were the most important factors in patient survival. Our results are consistent with those of other studies in relation to disease incidence but differ somewhat with respect to histological type. (J Oral Sci 58, 67-73, 2016).

Background: Preventable mortality is a good indicator of possible problems to be investigated in the primary prevention chain, making it also a useful tool with which to evaluate health policies particularly public health policies. This study describes inequalities in preventable avoidable mortality in relation to socioeconomic status in small urban areas of thirty three Spanish cities, and analyses their evolution over the course of the periods 1996-2001 and 2002-2007., Methods: We analysed census tracts and all deaths occurring in the population residing in these cities from 1996 to 2007 were taken into account. The causes included in the study were lung cancer, cirrhosis, AIDS/HIV, motor vehicle traffic accidents injuries, suicide and homicide. The census tracts were classified into three groups, according their socioeconomic level. To analyse inequalities in mortality risks between the highest and lowest socioeconomic levels and over different periods, for each city and separating by sex, Poisson regression were used., Results: Preventable avoidable mortality made a significant contribution to general mortality (around 7.5%, higher among men), having decreased over time in men (12.7 in 1996-2001 and 10.9 in 2002-2007), though not so clearly among women (3.3% in 1996-2001 and 2.9% in 2002-2007). It has been observed in men that the risks of death are higher in areas of greater deprivation, and that these excesses have not modified over time. The result in women is different and differences in mortality risks by socioeconomic level could not be established in many cities., Conclusions: Preventable mortality decreased between the 1996-2001 and 2002-2007 periods, more markedly in men than in women. There were socioeconomic inequalities in mortality in most cities analysed, associating a higher risk of death with higher levels of deprivation. Inequalities have remained over the two periods analysed. This study makes it possible to identify those areas where excess preventable mortality was associated with more deprived zones. It is in these deprived zones where actions to reduce and monitor health inequalities should be put into place. Primary healthcare may play an important role in this process.

Background: This is an international study across four European countries (Belgium[BE], the Netherlands[NL], Italy[IT] and Spain[ES]) between 2009 and 2011, describing and comparing care and care setting transitions provided in the last three months of life of cancer patients, using representative GP networks., Methods: General practitioners (GPs) of representative networks in each country reported weekly all non-sudden cancer deaths (+18y) within their practice. GPs reported medical end-of-life care, communication and circumstances of dying on a standardised questionnaire. Multivariate logistic regressions (BE as a reference category) were conducted to compare countries., Results: Of 2,037 identified patients from four countries, four out of five lived at home or with family in their last year of life. Over 50% of patients had at least one transition in care settings in the last three months of life; one third of patients in BE, IT and ES had a last week hospital admission and died there. In the last week of life, a treatment goal was adopted for 80-95% of those having palliation/comfort as their treatment goal. Cross-country differences in end-of-life care provision included GPs in NL being more involved in palliative care (67%) than in other countries (35%-49%) (OR 1.9) and end-of-life topics less often discussed in IT or ES. Preference for place of death was less often expressed in IT and ES (32-34%) than in BE and NL (49-74%). Of all patients, 88-98% were estimated to have distress from at least one physical symptom in the final week of life., Conclusion: Although palliative care was the main treatment goal for most cancer patients at the end of life in all four countries, frequent late hospital admissions and the symptom burden experienced in the last week of life indicates that further integration of palliative care into oncology care is required in many countries.

Autosomal dominant polycystic kidney disease (ADPKD) is a major cause of end-stage kidney failure, but is often identified early and therefore amenable to timely treatment. Interventions known to postpone the need for renal replacement therapy (RRT) in non-ADPKD patients have also been tested in ADPKD patients, but with inconclusive results. To help resolve this we determined changes in RRT incidence rates as an indicator for increasing effective renoprotection over time in ADPKD. We analyzed data from the European Renal Association-European Dialyses and Transplant Association Registry on 315,444 patients starting RRT in 12 European countries between 1991 and 2010, grouped into four 5-year periods. Of them, 20,596 were due to ADPKD. Between the first and last period the mean age at onset of RRT increased from 56.6 to 58.0 years. The age- and gender-adjusted incidence rate of RRT for ADPKD increased slightly over the four periods from 7.6 to 8.3 per million population. No change over time was found in the incidence of RRT for ADPKD up to age 50, whereas in recent time periods the incidence in patients above the age of 70 clearly increased. Among countries there was a significant positive association between RRT take-on rates for non-ADPKD kidney disease and ADPKD. Thus, the increased age at onset of RRT is most likely due to an increased access for elderly ADPKD patients or lower competing risk prior to the start of RRT rather than the consequence of effective emerging renoprotective treatments for ADPKD.

Background: Autosomal dominant polycystic kidney disease (ADPKD) is the fourth most common renal disease requiring renal replacement therapy (RRT). Still, there are few epidemiological data on the prevalence of, and survival on RRT for ADPKD., Methods: This study used data from the ERA-EDTA Registry on RRT prevalence and survival on RRT in 12 European countries with 208 million inhabitants. We studied four 5-year periods (1991-2010). Survival analysis was performed by the Kaplan-Meier method and by Cox proportional hazards regression., Results: From the first to the last study period, the prevalence of RRT for ADPKD increased from 56.8 to 91.1 per million population (pmp). The percentage of prevalent RRT patients with ADPKD remained fairly stable at 9.8%. Two-year survival of ADPKD patients on RRT (adjusted for age, sex and country) increased significantly from 89.0 to 92.8%, and was higher than for non-ADPKD subjects. Improved survival was noted for all RRT modalities: haemodialysis [adjusted hazard ratio for mortality during the last versus first time period 0.75 (95% confidence interval 0.61-0.91), peritoneal dialysis 0.55 (0.38-0.80) and transplantation 0.52 (0.32-0.74)]. Cardiovascular mortality as a proportion of total mortality on RRT decreased more in ADPKD patients (from 53 to 29%), than in non-ADPKD patients (from 44 to 35%). Of note, the incidence rate of RRT for ADPKD remained relatively stable at 7.6 versus 8.3 pmp from the first to the last study period, which will be discussed in detail in a separate study., Conclusions: In ADPKD patients on RRT, survival has improved markedly, especially due to a decrease in cardiovascular mortality. This has led to a considerable increase in the number of ADPKD patients being treated with RRT., (© The Author 2014. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.)

Background: While research continues into indicators such as preventable and amenable mortality in order to evaluate quality, access, and equity in the healthcare, it is also necessary to continue identifying the areas of greatest risk owing to these causes of death in urban areas of large cities, where a large part of the population is concentrated, in order to carry out specific actions and reduce inequalities in mortality. This study describes inequalities in amenable mortality in relation to socioeconomic status in small urban areas, and analyses their evolution over the course of the periods 1996-99, 2000-2003 and 2004-2007 in three major cities in the Spanish Mediterranean coast (Alicante, Castellón, and Valencia)., Methods: All deaths attributed to amenable causes were analysed among non-institutionalised residents in the three cities studied over the course of the study periods. Census tracts for the cities were grouped into 3 socioeconomic status levels, from higher to lower levels of deprivation, using 5 indicators obtained from the 2001 Spanish Population Census. For each city, the relative risks of death were estimated between socioeconomic status levels using Poisson's Regression models, adjusted for age and study period, and distinguishing between genders., Results: Amenable mortality contributes significantly to general mortality (around 10%, higher among men), having decreased over time in the three cities studied for men and women. In the three cities studied, with a high degree of consistency, it has been seen that the risks of mortality are greater in areas of higher deprivation, and that these excesses have not significantly modified over time., Conclusions: Although amenable mortality decreases over the time period studied, the socioeconomic inequalities observed are maintained in the three cities. Areas have been identified that display excesses in amenable mortality, potentially attributable to differences in the healthcare system, associated with areas of greater deprivation. Action must be taken in these areas of greater inequality in order to reduce the health inequalities detected. The causes behind socioeconomic inequalities in amenable mortality must be studied in depth.

Context: Effective communication is central to high-quality end-of-life care., Objectives: This study examined the prevalence of general practitioner (GP)-patient discussion of end-of-life topics (according to the GP) in Italy, Spain, Belgium, and The Netherlands and associated patient and care characteristics., Methods: This cross-sectional, retrospective survey was conducted with representative GP networks. Using a standardized form, GPs recorded the health and care characteristics in the last three months of life, and the discussion of 10 end-of-life topics, of all patients who died under their care. The mean number of topics discussed, the prevalence of discussion of each topic, and patient and care characteristics associated with discussions were estimated per country., Results: In total, 4396 nonsudden deaths were included. On average, more topics were discussed in The Netherlands (mean=6.37), followed by Belgium (4.45), Spain (3.32), and Italy (3.19). The topics most frequently discussed in all countries were "physical complaints" and the "primary diagnosis," whereas "spiritual and existential issues" were the least frequently discussed. Discussions were most prevalent in The Netherlands, followed by Belgium. The GPs from all countries tended to discuss fewer topics with older patients, noncancer patients, patients with dementia, patients for whom palliative care was not an important treatment aim, and patients for whom their GP had not provided palliative care., Conclusion: The prevalence of end-of-life discussions varied across the four countries. In all countries, training priorities should include the identification and discussion of spiritual and social problems and early end-of-life discussions with older patients, those with cognitive decline if possible, and those with non-malignant diseases., (Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)

Objectives: The objective of this study is to estimate the prevalence of congenital heart defects (CHD) in the Comunitat Valenciana (CV) in children less than one year old and identify whether there are temporal and geographic variations within this prevalence., Methods: The minimum basic data set from hospital discharge reports was used to select patients, who were born between 1999-2008, were less than one year old, and who lived in the CV with at least one hospital admission in which the primary diagnosis and/or any of the events were coded as CHD (codes 745-747 of the International Classification of Diseases 9th Revision Clinical Modification). The first hospital discharge report with CHD was selected, using the health card number to detect duplication. The prevalence and 95% confidence intervals were calculated, and the prevalence ratio (PR) and smoothed PR was obtained for each municipality to identify geographic patterns., Results: In the period 1999-2008 there were 6.377 patients younger than one year with some CHD, representing the 43.2% of cases of congenital anomalies. The prevalence was 134.3 per 10.000 live births (95% CI: 131.1-137.6). There was a significant increase in the prevalence, from 115.8 in the 1999-2003 period to 149.5 in the 2004-2008 period. A higher risk was identified in the north of the CV, and in some municipalities of the province of Alicante, in the south., Conclusions: The observed increase in CHD agrees with the findings in other countries and it can be explained, at least in part, by improved diagnostic techniques. The geographic pattern identified requires a more detailed analysis that could explain the geographic variations found., (Copyright © 2012 Asociación Española de Pediatría. Published by Elsevier Espana. All rights reserved.)

Background: Although end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology., Methods: Nationwide representative Networks of General Practitioners (GPs)--ie epidemiological surveillance systems representative of all GPs in a country or large region of a country--in Belgium, The Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009-2010)., Results: A total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in The Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries., Conclusion: Via the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries, measuring across setting and diseases. The data can serve as baseline measurement to compare and monitor end-of-life care over time. The use of representative GP networks for end-of-life care monitoring has huge potential in Europe where several of these networks are operational.

Background: The relationship between deprivation and mortality in urban settings is well established. This relationship has been found for several causes of death in Spanish cities in independent analyses (the MEDEA project). However, no joint analysis which pools the strength of this relationship across several cities has ever been undertaken. Such an analysis would determine, if appropriate, a joint relationship by linking the associations found., Methods: A pooled cross-sectional analysis of the data from the MEDEA project has been carried out for each of the causes of death studied. Specifically, a meta-analysis has been carried out to pool the relative risks in eleven Spanish cities. Different deprivation-mortality relationships across the cities are considered in the analysis (fixed and random effects models). The size of the cities is also considered as a possible factor explaining differences between cities., Results: Twenty studies have been carried out for different combinations of sex and causes of death. For nine of them (men: prostate cancer, diabetes, mental illnesses, Alzheimer's disease, cerebrovascular disease; women: diabetes, mental illnesses, respiratory diseases, cirrhosis) no differences were found between cities in the effect of deprivation on mortality; in four cases (men: respiratory diseases, all causes of mortality; women: breast cancer, Alzheimer's disease) differences not associated with the size of the city have been determined; in two cases (men: cirrhosis; women: lung cancer) differences strictly linked to the size of the city have been determined, and in five cases (men: lung cancer, ischaemic heart disease; women: ischaemic heart disease, cerebrovascular diseases, all causes of mortality) both kinds of differences have been found. Except for lung cancer in women, every significant relationship between deprivation and mortality goes in the same direction: deprivation increases mortality. Variability in the relative risks across cities was found for general mortality for both sexes., Conclusions: This study provides a general overview of the relationship between deprivation and mortality for a sample of large Spanish cities combined. This joint study allows the exploration of and, if appropriate, the quantification of the variability in that relationship for the set of cities considered.

Persons with Down syndrome (DS) uniquely have an increased frequency of leukemias but a decreased total frequency of solid tumors. The distribution and frequency of specific types of brain tumors have never been studied in DS. We evaluated the frequency of primary neural cell embryonal tumors and gliomas in a large international data set. The observed number of children with DS having a medulloblastoma, central nervous system primitive neuroectodermal tumor (CNS-PNET) or glial tumor was compared to the expected number. Data were collected from cancer registries or brain tumor registries in 13 countries of Europe, America, Asia and Oceania. The number of DS children with each category of tumor was treated as a Poisson variable with mean equal to 0.000884 times the total number of registrations in that category. Among 8,043 neural cell embryonal tumors (6,882 medulloblastomas and 1,161 CNS-PNETs), only one patient with medulloblastoma had DS, while 7.11 children in total and 6.08 with medulloblastoma were expected to have DS. (p 0.016 and 0.0066 respectively). Among 13,797 children with glioma, 10 had DS, whereas 12.2 were expected. Children with DS appear to be specifically protected against primary neural cell embryonal tumors of the CNS, whereas gliomas occur at the same frequency as in the general population. A similar protection against neuroblastoma, the principal extracranial neural cell embryonal tumor, has been observed in children with DS. Additional genetic material on the supernumerary chromosome 21 may protect against embryonal neural cell tumor development.

Objective: To evaluate spatial variation in exposure to nitrogen dioxide (NO2) air pollution in the city of Valencia, Spain, and its association with socioeconomic deprivation and age., Methods: Census tract population data were obtained from the National Statistics Institute of Spain. Outdoor NO2 was monitored in 100 sites in the study area, through the use of passive samplers, in three campaigns between 2002 and April 2004. Land use regression (LUR) was used to obtain a map of NO2 levels. The LUR predictions were compared with the NO2 level obtained by: a) the nearest sampler of the monitoring network, b) the nearest passive sampler, c) the mean distance-weighted levels of the samplers in the neighborhood, and d) the NO2 level obtained by using Kriging. For each census tract, the NO2 levels were obtained. The association of NO2 air pollution exposure with population age (≥65 years) and the 5-category deprivation index was analyzed., Results: The LUR models showed less error than the other prediction methods. The safety levels proposed by the World Health Organization were exceeded in more than 99% of the population. An inverse relationship was found between NO2 levels and the deprivation index (β = -2.01μg/m(3) in the most deprived quintile compared with lower deprivation, 95%CI: -3.07; -0.95) and a direct relationship was found with age (β = 0.12μg/m(3) per unit increase in percentage of the population ≥ 65 years, 95%CI: 0.08; 0.16)., Conclusions: The method allowed pollution maps to be obtained and the association between NO2 levels and sociodemographic characteristics to be described., (Copyright © 2011 SESPAS. Published by Elsevier Espana. All rights reserved.)

Background: Making treatment decisions in anticipation of possible future incapacity is an important part of patient participation in end-of-life decision-making. This study estimates and compares the prevalence of GP-patient end-of-life treatment discussions and patients' appointment of surrogate decision-makers in Italy, Spain, Belgium and the Netherlands and examines associated factors., Methods: A cross-sectional, retrospective survey was conducted with representative GP networks in four countries. GPs recorded the health and care characteristics in the last three months of life of 4,396 patients who died non-suddenly. Prevalences were estimated and logistic regressions were used to examine between country differences and country-specific associated patient and care factors., Results: GP-patient discussion of treatment preferences occurred for 10%, 7%, 25% and 47% of Italian, Spanish, Belgian and of Dutch patients respectively. Furthermore, 6%, 5%, 16% and 29% of Italian, Spanish, Belgian and Dutch patients had a surrogate decision-maker. Despite some country-specific differences, previous GP-patient discussion of primary diagnosis, more frequent GP contact, GP provision of palliative care, the importance of palliative care as a treatment aim and place of death were positively associated with preference discussions or surrogate appointments. A diagnosis of dementia was negatively associated with preference discussions and surrogate appointments., Conclusions: The study revealed a higher prevalence of treatment preference discussions and surrogate appointments in the two northern compared to the two southern European countries. Factors associated with preference discussions and surrogate appointments suggest that delaying diagnosis discussions impedes anticipatory planning, whereas early preference discussions, particularly for dementia patients, and the provision of palliative care encourage participation.

Background and Objectives: Congenital anomalies of the kidney and urinary tract (CAKUT) are the leading cause of ESRD in children, but the proportion of patients with individual CAKUT entities progressing to ESRD during adulthood and their long-term clinical outcomes are unknown. This study assessed the age at onset of renal replacement therapy (RRT) and patient and renal graft survival in patients with CAKUT across the entire age range., Design, Setting, Participants, & Measurements: Patients with CAKUT were compared with age-matched patients who were undergoing RRT for other renal disorders on the basis of data from the European Renal Association-European Dialysis and Transplant Association Registry. Competing risk and Cox regression analyses were conducted., Results: Of 212,930 patients commencing RRT from 1990 to 2009, 4765 (2.2%) had renal diagnoses consistent with CAKUT. The proportion of incident RRT patients with CAKUT decreased from infancy to childhood and then increased until age 15-19 years, followed by a gradual decline throughout adulthood. Median age at RRT start was 31 years in the CAKUT cohort and 61 years in the non-CAKUT cohort (P<0.001). RRT was started earlier (median, 16 years) in patients with isolated renal dysplasia than in those with renal hypoplasia and associated urinary tract disorders (median, 29.5-39.5 years). Patients with CAKUT survived longer than age- and sex-matched non-CAKUT controls because of lower cardiovascular mortality (10-year survival rate, 76.4% versus 70.7%; P<0.001)., Conclusions: CAKUT leads to ESRD more often at adult than pediatric age. Treatment outcomes differ from those of acquired kidney diseases and vary within CAKUT subcategories.

The European Renal Association-European Dialysis and Transplant Association (ERA-EDTA) Registry has produced a new set of primary renal diagnosis (PRD) codes that are intended for use by affiliated registries. It is designed specifically for use in renal centres and registries but is aligned with international coding standards supported by the WHO (International Classification of Diseases) and the International Health Terminology Standards Development Organization (SNOMED Clinical Terms). It is available as supplementary material to this paper and free on the internet for non-commercial, clinical, quality improvement and research use, and by agreement with the ERA-EDTA Registry for use by commercial organizations. Conversion between the old and the new PRD codes is possible. The new codes are very flexible and will be actively managed to keep them up-to-date and to ensure that renal medicine can remain at the forefront of the electronic revolution in medicine, epidemiology research and the use of decision support systems to improve the care of patients.