Delivery of care for adult patients with congenital heart disease in Europe: Results from the Euro Heart Survey

Aims: The increasing number of adults with congenital heart disease (CHD) has prompted the development of recommendations for the management of these patients and for the organization of their healthcare. The aim of this report is to describe the delivery of care in Europe for adults with congenital cardiac anomalies. Methods and results: As part of the Euro Heart Survey on Adult Congenital Heart Disease, we obtained data from 71 voluntarily participating centres that detailed their care practices for these patients. Forty-eight of these centres were specialist centres and 23 were non-specialist centres. We found that only 19% of the specialist centres complied with defined standards for optimal care structure. The criteria that appeared to be most difficult for all centres to achieve were performing 50 congenital heart operations or more per year and involving nurse specialists in the care of these patients. Conclusion: This survey indicated that the provision of care in Europe for adults with congenital

Rendering hospital budgets volume based and open ended to reduce waiting lists: does it work?

Item does not contain fulltextIn the past decades fixed budgets for hospitals were replaced by reimbursement based on outputs in several countries in order to bring down waiting lists. This was also the case in the Netherlands where fixed global budgets were replaced by budgets that are to a large extent volume based and in practice open-ended. The objective of this study was to examine the effectiveness of this Dutch policy measure, which was implemented in 2001. We carried out a statistical analysis and interpretation of trends in Dutch hospital admission rates. We observed a significant turn in the development of in-patient admission rates after the abolition of budget caps in 2001: decreasing admission rates turned into an internationally exceptional increase of more than 3% per year. Day care admissions had already been rising explosively for two decades, but the pace increased after 2001. The increase in the number of admissions includes a broad range of patient categories that were not in the first place associated with long waiting times. The growth was attributable for a large part to admissions for observation of the patient and the evaluation of symptoms, not resulting in a definite medical diagnosis. We considered several factors, other than the availability of more resources, to explain the growth: the ageing of the population, making up for waiting list arrears, ditto for "under consumption" of unplanned care and, as to the growth of day care, substitution for inpatient care. However, these factors were all found to fall short as an explanation. Although waiting times have dropped since the change in the budget system, they continue to be long for several procedures. Our study indicates that making available more resources to admit patients, or otherwise an increase in hospital activity, do not in itself lead to equilibrium between demand and supply because the volume and composition of demand are partly induced by supply. We conclude that abolishing budget caps to solve waiting list problems is not efficient. Instead of a generic measure, a more focused approach is necessary. We suggest ingredients for such an approach

To die with of from heart failure: a difference that counts: is heart failure underrepresented in national mortality statistics?

Aims Mortality attributed to a disease is an important public health measure of the ‘burden’ of that disease. A discrepancy has been noted between the high mortality rates associated with heart failure (HF) and the share of deaths ascribed to HF in official mortality statistics. It was our main aim to estimate excess mortality associated with HF and use the estimates to better understand the burden of HF. Methods and results Excess mortality was defined as the difference in mortality rates between individuals with and those without HF. An epidemiological model was formulated that allowed deriving age-specific excess mortality rates in HF patients from HF incidence and prevalence. Incidence and prevalence were estimated from yearly collected cross-sectional data from four nationally representative General Practice registries in the Netherlands. The year 2007 was chosen as a reference. Next, excess mortality rates were used to calculate numbers of deaths among HF patients and compare the figures with national cause-of-death statistics. The latter were found to be more than three times smaller than the former (roughly 6000 vs. 21 000). Further, by applying HF prevalence and mortality rates to a life table of the Dutch population, average numbers of life years lost due to HF were calculated to be 6.9 years. Conclusion National mortality statistics strongly underestimate the number of deaths associated with HF. Moreover, the high mortality rate in HF patients amounts to a remarkably large number of life years lost given the advanced age of disease onset

Aortic root growth in men and women with the Marfan's syndrome.

Contains fulltext : 48012timmermans.pdf (publisher's version ) (Closed access)The leading cause of premature death in patients with Marfan's syndrome (MS) is type A aortic dissection or rupture due to progressive aortic root dilation. The aim of this study was to analyze aortic root growth in 113 men and 108 women with MS. All patients were prospectively followed with serial echocardiograms of the native aortic root. At baseline, women had on average a 5-mm smaller aortic root diameter adjusted for age than men. Average aortic root growth was 0.42 mm/year (SE 0.05) in men and 0.38 mm/year (SE 0.04) in women. On the basis of aortic root growth rates, the men and women could be divided into 2 normally distributed subgroups: fast and slow growers. Approximately 1 in 7 men (1.5 mm/year, SE 0.5) and approximately 1 in 9 women (1.8 mm/year, SE 0.3) had fast-growing aortic root diameters. Significantly more type A dissections (25% vs 4%, p <0.001) were observed in fast growers than in slow growers; this was found in men and women. Type A dissections were observed in 4 men and 9 women. By reducing the cut-off value by 5 mm for elective aortic root replacement in women, type A dissections could have been prevented in 3 women. In conclusion, guidelines should take gender differences into account, and therefore, the investigators propose reducing the threshold for elective aortic root replacement in women with MS by 5 mm

To die with of from heart failure: a difference that counts: is heart failure underrepresented in national mortality statistics?

Aims Mortality attributed to a disease is an important public health measure of the ‘burden’ of that disease. A discrepancy has been noted between the high mortality rates associated with heart failure (HF) and the share of deaths ascribed to HF in official mortality statistics. It was our main aim to estimate excess mortality associated with HF and use the estimates to better understand the burden of HF. Methods and results Excess mortality was defined as the difference in mortality rates between individuals with and those without HF. An epidemiological model was formulated that allowed deriving age-specific excess mortality rates in HF patients from HF incidence and prevalence. Incidence and prevalence were estimated from yearly collected cross-sectional data from four nationally representative General Practice registries in the Netherlands. The year 2007 was chosen as a reference. Next, excess mortality rates were used to calculate numbers of deaths among HF patients and compare the figures with national cause-of-death statistics. The latter were found to be more than three times smaller than the former (roughly 6000 vs. 21 000). Further, by applying HF prevalence and mortality rates to a life table of the Dutch population, average numbers of life years lost due to HF were calculated to be 6.9 years. Conclusion National mortality statistics strongly underestimate the number of deaths associated with HF. Moreover, the high mortality rate in HF patients amounts to a remarkably large number of life years lost given the advanced age of disease onset