Linking a European cohort of children born with congenital anomalies to vital statistics and mortality records: A EUROlinkCAT study.

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.

Comparing patient generated blood glucose diary records with meter memory in type 2 diabetes.

AIM: To assess agreement between meter and diary self monitoring of blood glucose (SMBG) records, over a year, in a sample of patients with type 2 diabetes. METHODS: Meter and diary records were available, for 95 individuals, who took part in the Efficacy of self monitoring of blood glucose in patients with newly diagnosed type 2 diabetes study. Pearson's correlation coefficient was used to explore the relationships between the types of error. Maximum likelihood estimation was used to explore changes over time through a structural equation modelling approach. Paired samples t-tests were used to determine if the presence of errors led to a significant difference between the mean diary and meter SMBG concentrations or coefficients of variation. Multiple regression was used to explore possible predictors of the error indices. RESULTS: Mean over-reporting, under-reporting, concordance and overall reliability were 8.4%, 10.0%, 83.5% and 71.3%, respectively. The first week of monitoring had significantly more under-reporting, over-reporting and less concordance and overall reliability than subsequent weeks. The majority of concordance errors were not clinically significant. Those that were, tended to occur during the first three months of monitoring. Participants' at one trial site were significantly more likely to have recording errors than those at the largest site. CONCLUSIONS: Error levels were similar to those described previously in type 1 diabetes and there was a suggestion of an initial learning curve for record keeping. For some individuals diary records would not be considered acceptable if held to the same standards as blood glucose meters.

Comparing patient-generated blood glucose diary records with meter memory in diabetes: a systematic review.

AIMS: To synthesize evidence relating to comparisons between patient-generated blood glucose records and meter memory in diabetes and to identify any predictors of agreement. METHODS: A systematic literature search was performed to identify articles comparing meter and diary records in those unaware of this assessment. RESULTS: Eleven observational studies, covering patients with Type 1, Type 2 and gestational diabetes were included spanning 1984-2009. Failure to record blood glucose measurements in the diary was the most extensive 'error', but addition of values, which were not measured, was a greater cause for concern. When present to a high degree, 'errors' lead to decreased variability in diary records compared with meter records. Allowing for a minimal amount of disagreement, just over 50% of adult diaries can be considered as 'accurate/reliable'. Disagreements were most extensive in teenagers and young adults, but the pregnant populations were only slightly better. Agreement was not related to sex, number of insulin injections or duration of monitoring. Those who were younger were more likely to have 'errors', while those who monitored more frequently had more 'accurate' diaries. CONCLUSIONS: The lack of meter-diary agreement suggests that the real reason for monitoring is not understood by many patients, raising issues about motivation, perceived need to impress healthcare providers and denial of poor control. Considering that diaries are used to inform decisions about therapy when HbA1c is raised or in pregnancy, when HbA1c is not suitable, there is significant cause for concern in relation to their clinical utility.

Life satisfaction and death anxiety in elderly nursing home and public housing residents.

To compare life satisfaction and death anxiety in older adults, 30 elderly residents of a public housing apartment complex and 20 nursing home residents completed the Death Anxiety Scale, the Philadelphia Geriatric Center Morale Scale, and a structured interview. Nursing home residents more frequently reported that in five years they expected to be dead, whereas public housing residents more frequently reported that in five years they would be doing about the same thing or nothing. The two groups did not differ on their reported death anxiety or life satisfaction. However, across both groups, those reporting higher life satisfaction also reported lower death anxiety and a more positive attitude toward growing older. It appears that, for the elderly individuals in this study, place of residence was not related to their expression of life satisfaction or death anxiety.

A comparison of personality characteristics between in vitro fertilization patients and other infertile patients.

Fifty patients of an in vitro fertilization (IVF) program were compared to 25 individuals undergoing fertility investigation other than IVF. Each subject was given the California Psychological Inventory (CPI) and a social history interview during which behavioral signs of anxiety were noted. The CPI profile indicated the IVF subjects to be higher on characteristics of ambitiousness, creativity, and independence. No major differences were noted on the interview questions and behavioral ratings. Both groups may view IVF as a possible treatment for their infertility; however, the IVF patients have certain personality characteristics which make them more likely to actually become involved.