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The register-based system of demographic and social statistics in Denmark.

"Denmark has developed a statistical system where a large portion of official statistics is based on administrative registers. Population and Housing Censuses have been replaced by register based statistics since 1981. The key of the system is the unique Person Number used in all public administrations. A large number of registers is used as sources and is linked together in order to compile the best estimates of the statistical concepts. This allows for high quality statistics that are timely, consistent and well-suited for longitudinal studies. Problems of quality may arise from changes in the legislation or in the registers. A strong data protection policy is necessary in order to preserve the system."

Confidentiality↗

Mortality and diabetes from a population based register in Yorkshire 1978-93.

OBJECTIVE: To investigate mortality of children diagnosed with insulin dependent diabetes mellitus (IDDM) and to identify common factors before death. DESIGN: Follow up of a population based cohort of children diagnosed with IDDM to ascertain deaths. SETTING: Children were diagnosed in Yorkshire but followed up throughout the United Kingdom. SUBJECTS: From the Yorkshire Children's Diabetes Register details of 1854 children aged 0-16 years (1978-93) were submitted to the NHS Central Register. MAIN OUTCOME MEASURE: Notification and causes of death. RESULTS: 98.3% of cases were traced and 26 deaths identified. Follow up ranged from 1-18 years (median 9.3 years), providing 17,350 person-years of IDDM. Fifteen deaths (58%) were attributed to diabetes or its complications; 11 (42%) were unrelated and included one suicide. For mortality from all causes, the standardised mortality ratio (SMR) of 247 (95% confidence interval (CI) 163 to 362) was significantly increased for those under 34 years. The largest number of deaths (n = 10) occurred in the 15-19 year age range, with an SMR of 442 (95% CI 209 to 802). Case note examination showed a clear tendency towards poor diabetic control, and worries over control were expressed before death by health care professionals. CONCLUSIONS: Despite advances in treatment, IDDM still carries an increased mortality for young people, particularly in the "transition" age range.

Adolescent↗

Birth rate among patients with epilepsy: a nationwide population-based cohort study in Finland.

Few reports on population-based studies of birth rate among epilepsy patients have been published. In most previous studies, fertility has been lower among epilepsy patients than in the rest of the population. However, conflicting results have also been reported. Because of small samples and selective material, the generalizability of these results is also limited. The authors conducted a population-based cohort study of birth rate (1985-2001) in a nationwide Finnish cohort of patients with newly diagnosed epilepsy and a population-based reference cohort. All patients (n = 14,077) approved as eligible for reimbursement for antiepileptic medication from the Social Insurance Institution of Finland (KELA) for the first time between 1985 and 1994 were identified from the KELA database. A reference cohort (n = 29,828) was identified from the Finnish Population Register Center, with frequency-matching on age. Information on follow-up status and livebirths were also obtained from the Finnish Population Register Center. The birth rate was lower in patients with epilepsy than in the reference cohort among both men (hazard ratio = 0.58, 95% confidence interval: 0.54, 0.62) and women (hazard ratio = 0.88, 95% confidence interval: 0.83, 0.93). There were a clear decreasing trend by age at observation in men with epilepsy and a moderate decreasing trend by age at start of follow-up in women with epilepsy.

Adolescent↗

Large differences in incidences of overt hyper- and hypothyroidism associated with a small difference in iodine intake: a prospective comparative register-based population survey.

Around 3-4 billion people in the world are covered by iodine supplementation programs to prevent developmental brain damage and other iodine deficiency (ID) disorders. Mild ID is associated with more hyperthyroidism and less hypothyroidism in the population than a high iodine intake. Knowledge of the iodine intake levels where the shifts in incidences occur is important for planning of iodine supplementation programs. A computer-based register linked to thyroid diagnostic laboratories was used to continuously identify all new cases of overt hyper- and hypothyroidism in two population cohorts with moderate and mild ID, respectively (Aalborg, n = 310,124; urinary iodine, 45 micro g/liter; and Copenhagen, n = 225,707; urinary iodine, 61 micro g/liter). The investigation was initiated before iodization of salt in Denmark and was part of the monitoring program. In 1997-1998, the incidence rate of overt hyperthyroidism was high in the area with the lowest iodine intake (92.9/100,000 per year) compared with the area with only mild ID (65.4/100,000 per year). Standardized rate ratio was 1.49, and 95% confidence interval was 1.22-1.81. The opposite relationship was present for overt hypothyroidism (moderate ID, 26.5/100,000 per year; mild ID, 40.1/100,000 per year; standardized rate ratio, 0.73; 95% confidence interval, 0.55-0.97). The different incidence rates were confirmed during each of the two following years. The results of this prospective investigation of the incidence of overt hyper- and hypothyroidism suggest that iodine supplementation of a population may increase the incidence of overt hypothyroidism, even if the population is moderately iodine-deficient. In such a population, the increase in risk of hypothyroidism should be weighed against the risk of ID disorders such as hyperthyroidism due to multinodular toxic goiter. The optimal level of iodine intake to prevent thyroid disease may be a relatively narrow range around the recommended daily iodine intake of 150 micro g.

Adolescent↗

Molar pregnancy and risk for cancer in women and their male partners.

OBJECTIVE: It was our aim to evaluate the hypothesis that molar pregnancy is a marker of increased risk for cancer. STUDY DESIGN: This was a nationwide cohort study of 1520 women, identified from the Danish National Register of Patients, in whom a molar pregnancy was diagnosed during the period 1977-1992 and of 1295 male partners of these women, traced in the Danish Central Population Register. RESULTS: Linkage of the female roster with the Danish Cancer Registry through 1994 revealed 19 cases of gestational choriocarcinoma, whereas 0.04 was expected from the rates for the general population. Twenty cases of cancers of other types were observed with 24.9 expected (standardized incidence ratio, 0.8; 95% confidence interval, 0.5-1.2), but no specific type of cancer other than gestational choriocarcinoma occurred at a rate significantly different from that expected. Among the 1295 male partners notified in the Central Population Register, a total of 22 cancers were observed with 21.9 expected (standardized incidence ratio, 1.0; 95% confidence interval, 0.7-1.5). CONCLUSION: Molar pregnancy is not associated with an increased risk for cancer other than gestational carcinoma.

Adolescent↗

Impact of low birthweight on subsequent fertility: population-based register study.

Adverse birth outcomes may influence a family's wish for additional children. We investigated the influence of low birthweight in live births on subsequent fertility, and estimated secular trends of such an effect in a population-based cohort study of births arranged in consecutive sibship records in the Medical Birth Registry of Norway. We included births of order one to seven to all 587 785 mothers in Norway who had a first singleton birth in 1967-91. Associations between birthweight in 1 158 072 surviving index births of order one to six, 1967-91, and subsequent fertility (probability of another birth), 1967-97, were estimated as fertility ratios in Cox regression analysis. Giving birth to a live infant weighing < 3000 g had a negative effect on subsequent fertility, increasingly strong for decreasing birthweight. Low birthweight (<2500 g) was associated with a fertility ratio of 0.88 [95% confidence interval 0.87, 0.89]. This negative impact was stronger if the mother had also given birth to surviving children of low birthweight previously, particularly if combined with caesarean section in the most recent birth. The negative fertility effect of low birthweight grew slightly stronger between 1967 and approximately 1980, according to year of first birth. This trend paralleled reduced population fertility in the same period. The moderate negative impact of giving birth to a live infant of low birthweight on subsequent fertility could result from the combination of reduced wish for additional children and biological subfertility.

Female↗

Developing a disease-specific quality of life measure for people with multiple sclerosis.

OBJECTIVES: To develop a patient-completed disease-specific measure of quality of life in multiple sclerosis and to validate the measure in a community-based population of people with multiple sclerosis. METHODS: The items in the scale were selected in focus group sessions of people with multiple sclerosis. The initial scale included 25 items and was tested in subgroups of 150 people from a population register of people with multiple sclerosis in Leeds. Following further developmental phases, a restructured 16-item scale was tested on a random sample of 200 people with multiple sclerosis from the population register, stratified according to disease course. This led to a final eight-item unidimensional scale, the Leeds Multiple Sclerosis Quality of Life (LMSQoL) scale. RESULTS: After initial development a 16-item scale was found to be both reliable and valid. Cronbach's alpha for the 16-item scale was 0.86. The test-retest correlation was 0.74, using a two-week retest interval. However, convergent validity with the General Well Being Index was 0.67 and with the SF-36 Physical Function Scale was 0.68. This suggested that the scale straddled these two concepts and was confirmed by fit of the data to the Rasch measurement model. This revealed the potential for a reduced eight-item version of the scale. The eight-item scale had a closer association to well-being (0.83) than to physical function (0.39), had good internal consistency (0.79) and test-retest reliability (0.85). There were virtually no floor or ceiling effects for the scale. CONCLUSIONS: The study presents a disease-specific measure of quality of life in multiple sclerosis, the Leeds Multiple Sclerosis Quality of Life (LMSQoL) scale. The instrument is brief, easy to use and practical to administer in clinic or as a postal questionnaire. It measures a construct related to well-being, and provides an important adjunct to the measurement of outcome in multiple sclerosis.

Adult↗

Earlier Apgar score increase in severely depressed term infants cared for in Swedish level III units with 40% oxygen versus 100% oxygen resuscitation strategies: a population-based register study.

OBJECTIVES: The aim of this study was to evaluate whether a resuscitation strategy based on administration of 40% oxygen influences mortality rates and rates of improvement in 5-minute Apgar scores, compared with a strategy based on 100% oxygen administration. METHODS: A population-based study evaluated data from 4 Swedish perinatal level III centers during the period of 1998 to 2003. During this period, the centers used either of 2 resuscitation strategies (initial oxygen administration of 40% or 100%). Live-born, singleton, term infants with 1-minute Apgar scores of <4, with a birth weight appropriate for gestational age, and without major malformations were included in the study (n = 1223). RESULTS: Infants born in hospitals using a 40% oxygen strategy had a more rapid Apgar score increase than did infants born in hospitals using a 100% oxygen strategy; however, no difference remained at 10 minutes. The mean Apgar score increased from 2.01 at 1 minute to 6.74 at 5 minutes in the 2 hospitals initiating resuscitation with 40% oxygen, compared with 2.01 to 6.38 in the 2 hospitals using 100% oxygen, with a mean difference in Apgar score increases of 0.36. At 5 minutes, 44.3% of infants born in the hospitals using 100% oxygen had an Apgar score of <7, compared with 34.0% of infants at the hospitals using 40% oxygen. At 10 minutes, the mean Apgar scores were 8.16 at the hospitals using 40% oxygen and 8.07 at the hospitals using 100% oxygen. There were no significant differences in rates of neonatal death, hypoxic ischemic encephalopathy, or seizures in relation to the 2 oxygen strategies. CONCLUSION: Severely depressed term infants born in hospitals initiating resuscitation with 40% oxygen had earlier Apgar score recovery than did infants born in hospitals using a 100% oxygen strategy.

Apgar Score↗

[Demographic statistics after the GBA Law is passed].

"The Dutch Ministry of Internal Affairs plans to replace the old written population systems on paper with a new system of decentralized automated population registers (in Dutch this system is called: GBA) on 1 October 1994.... In the summer of 1993 Statistics Netherlands carried out a test to find out whether the GBA messages are appropriate for making population statistics. To do this such messages were forwarded to Statistics Netherlands by five municipalities for three months. The conclusion of the test results was that the GBA system is technically adequate for making population statistics." (SUMMARY IN ENG)

Data Collection↗

Mental disorders in the Greenlandic population. A register study.

In a register study of all psychiatric first hospitalizations (1974-93) of persons born and resident in Greenland rates for all admissions as well as for the separate diagnostic groups, hierarchically organized, were compared with corresponding figures for the population in Denmark. Relative mortality rates for the psychiatric patients compared with the general population were computed for the Greenlandic and Danish populations respectively. No significant differences in the total pattern of hospitalization was found, but Greenlandic men 15-24 years old and Greenlandic women 25-34 years old had significantly higher and older age groups lower first admission rates than Danish men and women, respectively. The rates for affective psychoses were low especially among men in Greenland, whereas the rates for schizophrenia among men were comparatively high. The relative mortality risk compared to the general population was much higher among Danish than Greenlandic psychiatric patients, especially regarding suicide. A probable explanation for that is that the suicide rate in the Green-landic general population is very high.

Adolescent↗

Diversity, dynamics and activity of bacterial populations in 'Registered Designation of Origin' Salers cheese by single-strand conformation polymorphism analysis of 16S rRNA genes.

AIMS: The aim of this work was to measure the dynamic global metabolic activities of the microbial community during ripening of RDO Salers cheese by using a direct molecular approach. METHODS AND RESULTS: A culture-independent approach including PCR, reverse transcriptase PCR (RT-PCR) and single strand conformation polymorphism (SSCP) analysis of 16S rRNA genes was applied on 'Registered Designation of Origin' Salers cheese samples collected in three farms. The evolution of the global structure of the microbial community in terms of structure or global activities was assessed using ecological indices. The diversity of the global population was higher on RNA patterns than on DNA patterns, because of less dominance and greater richness. Comparison of the SSCP patterns derived from RNA and DNA analysis indicated that the dominant population was not necessarily the most active. The metabolic activities of each bacterial group changed significantly during ripening. Besides lactic acid bacteria that were dominant on both DNA and RNA patterns, the dynamics of the presence and activity of microbial groups rarely studied in the core of cheese, such as corynebacteria, or of unidentified peaks were reported. CONCLUSIONS: By using SSCP RNA analysis, we were able to obtain information about the activity of bacterial population in cheese, which varied a lot between cheeses and was changing perpetually during ripening. SIGNIFICANCE AND IMPACT OF THE STUDY: Double DNA-RNA SSCP analysis opens up future prospects in the microbial ecology of cheeses. It will have many applications for controlling of microbial community during cheese processing.

Cheese↗

Prostate-specific antigen for prostate cancer staging in a population-based register.

OBJECTIVE: Previous studies have shown a relationship between serum prostate-specific antigen (PSA) level and prostate tumour volume. Reports based on selected case series have also indicated that serum PSA may be used for staging, although a varying prevalence of metastasizing tumours complicates the interpretation of these studies. In order to determine the accuracy of the serum level of PSA in predicting the presence of metastases we performed a prospective cohort study of a geographically defined population of men with prostate cancer. METHODS: Serum level of PSA and the results of investigations for regional lymph node and distant metastases were recorded for all 8328 men with prostate cancer registered in the Swedish National Prostate Cancer Register 1996-1997. RESULTS: The prevalence of lymph node metastases among men who had undergone lymph node exploration was 4%, 16% and 33% for well, moderately and poorly differentiated tumours. The corresponding prevalence of distant metastases was 12%, 30% and 48%. With serum PSA <20 ng/ml as a cut-off point the negative likelihood ratios for well and moderately differentiated tumours were found to be 0.47 and 0.45 for lymph node metastases and 0.24 and 0.18 for distant metastases, resulting in post-test probabilities >92% for the exclusion of metastases. In men with poorly differentiated tumours, the negative likelihood ratio would need to be even lower to safely exclude disseminated disease. CONCLUSION: For well to moderately differentiated tumours, further investigations to assess the presence of metastases may be omitted with no great risk for understaging if serum PSA <20 ng/ml.

Aged↗

[Spatial mobility projections of the population census: comparison with other sources].

This paper considers the descriptive capacity of Italian census data on spatial mobility. A systematic comparison is carried out between the Italian census and traditional sources--particularly the population register. The discussion concerns the items collected and published as well as the measurements obtained, their meaning, and their comparability. Many examples are presented, especially on migration flows during the 1976-1981 period, as recorded by the 1981 Italian population census, applied to the whole country as well as the regions, with particular reference to the Veneto region.

Censuses↗

Improved survival in patients with rectal cancer: a population-based register study.

BACKGROUND: Between 1985 and 1989, only one centre in Sweden combined preoperative radiotherapy with total mesorectal excision (TME) in the primary treatment of rectal cancer. The aim of this study was to investigate whether this change in primary treatment had an impact on the outcome. METHOD: The survival rate of 94,262 patients with colorectal cancer from the total Swedish population between 1960 and 1989 was analysed. RESULTS: A continuous improvement in relative survival rate occurred during the first year of follow-up for both colonic and rectal cancer. Some improvement was also seen during follow-up years 2-5, but this was much more pronounced during the last period (1985-1989) for rectal cancer in the county of Uppsala. The improvement was particularly marked during follow-up years 3-5. CONCLUSION: There are strong indications from this study that altered primary treatment for rectal cancer results in improved long-term survival.

Combined Modality Therapy↗

A perspective from countries using organized screening programs.

Cancer screening may be offered to a population opportunistically, as part of an organized program, or as some combination of the preceding two options. Organized screening is distinguished from opportunistic screening primarily on the basis of how invitations to screening are extended. In organized screening, invitations are issued from centralized population registers. In opportunistic screening, however, due to the lack of central registers, invitations to screening depend on the individual's decision or on encounters with health care providers. The current article outlines key differences between organized and opportunistic screening. In the current study, literature searches were performed using PubMed and MEDLINE. Additional data were assembled from interviews with health officials in the five countries investigated and from the authors' personal files. Opportunistic screening was found to be distinguishable from organized screening on the basis of whether screening invitations were issued from centralized population registers. Organized screening programs also assumed centralized responsibility for other key elements of screening, such as eligibility requirements, quality assurance, follow-up, and evaluation. Organized programs focused on reducing mortality and morbidity at the level of the population rather than at the level of the individual. Thus, programs did not necessarily offer the most sensitive screening test for a particular cancer, and tests sometimes were offered at suboptimal intervals with respect to individual-level protection. Nonetheless, organized systems paid greater attention to the quality of screening, as measured by factors such as cancer detection rates, tumor characteristics, and false-positive biopsy rates. As a result, participants in organized screening programs received greater protection from the harmful effects associated with screening. In addition, organized programs worked more systematically toward providing value for money in an inevitably resource-limited environment. Although organized and opportunistic models of screening can yield similar uptake rates, organized programs exhibited greater potential ability to reduce cancer incidence and mortality, because of the higher levels of population coverage and centralized commitment to quality and monitoring; were more likely to be cost-effective; and offered greater protection against the harmful effects associated with poor quality or overly frequent screening.

Cost-Benefit Analysis↗

Loss of partner and suicide risks among oldest old: a population-based register study.

BACKGROUND: while mortality among the oldest old has improved over recent decades, these improvements are not reflected in the suicide mortality of this age group. We do not know the reasons why the suicide mortality is still very high among the oldest old. OBJECTIVE: the aim is to analyse the impact that loss of a partner has on the suicide risks of the oldest old (80+) compared to younger age groups. SUBJECTS: the entire Danish population aged 50 during 1994-1998 (n = 1,978,527). METHODS: we applied survival analysis to calculate the changes in relative risk of suicide after a loss by using individual-level data. RESULTS: the majority of older persons who commit suicide are widowed, although only a relatively small proportion of the oldest old who commit suicide have experienced a recent loss of partner (men: 18%, women: 6%). In absolute terms, the oldest old men experience the highest increase in suicide risk immediately after the loss (15-fold; 95% CI 10.2-23.6) compared to middle-aged men who are still married. Oldest old men seem to suffer more from the loss and need longer time to recover than women. CONCLUSIONS: although a small proportion of oldest old who commit suicide have experienced a recent bereavement, there is a significant increase in the suicide risk during the first year after a bereavement, especially for men. However, the increased risk of suicide in the oldest old men may only in part be explained by the loss of a partner.

Aged↗

Can routine information systems be used to monitor serious disability?

OBJECTIVE: To determine whether reliable birth cohort prevalence rates of disabling conditions in early childhood can be obtained from child health information systems. DESIGN: Comparison of two sources of information on motor and sensory disabilities: from child health information systems held by health authorities, and a population register that uses multiple sources of ascertainment. SETTING: The counties of Oxfordshire, Buckinghamshire, and Northamptonshire. PARTICIPANTS: Children born to residents of the three counties between 1984 and 1989. RESULTS: Eight hundred and twenty children (6.0/1000 live births) were identified from the child health system as having one or more of the conditions, and 580 (4.2/1000 live births) were identified from the population register; however, only 284 children were identified by both sources. CONCLUSIONS: It is currently impossible to monitor trends in the prevalence rate of disabling disorders in childhood using the child health information systems. Agreement about ways of collecting, recording, and collating information on disability would be a useful step towards realising the full potential of these systems.

Cerebral Palsy↗

Prevalence, treatment, control, and awareness of high blood pressure and the risk of stroke in Northwest England.

OBJECTIVES: The aim of this study was to examine the prevalence, treatment, control, and awareness of hypertension in patients with first-ever stroke and in controls sampled from the same primary care physician's population register. METHODS: A population-based case-control study was conducted in East Lancashire, England, using cases identified from the stroke register in 1994-1995. Information on blood pressure (BP) and other predefined factors was extracted from the practice medical records. Postal questionnaires were used for information on patients' awareness of hypertension. RESULTS: A total of 267 stroke cases and 534 controls were included. Sixty-one percent of cases and 43% of controls had BP >= 160/95 mm Hg on >= 2 occasions within 3 months or received antihypertensives. High proportions of cases (82%) and controls (85%) were on treatment. There was a continuous relationship between the risk of stroke and levels of BP control. Of 73 cases and 135 controls who were hypertensive and responded to the postal questionnaire, 56 and 83%, respectively, were aware of hypertension (P<0.01). CONCLUSIONS: The prevalence of hypertension was high among stroke patients. In those treated, <30% of patients had their BP adequately controlled to <140/90 mm Hg. Patient awareness of previous hypertension or high BP was very poor and attention needs to be paid to patient education.

Age Distribution↗