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Register-based research in the Nordic countries. Mika Gissler Nordic School of Public Health, Gothenburg, Sweden & THL National Institute for Health and Welfare, Helsinki, Finland. Why good possibilities to register-based studies?.

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register based research in the nordic countries

Register-based research in the Nordic countries

Mika Gissler

Nordic School of Public Health, Gothenburg, Sweden &

THL National Institute for Health and Welfare, Helsinki, Finland

why good possibilities to register based studies
Why good possibilities to register-based studies?
  • Traditions: population statistics have been collected more than 250 years and health statistics more than 150 years in the Nordic countries.
  • First real registers were started in the 1940-1950s, when improved computers were available: health care personnel, cancer register.
  • Personal identification numbers since 1960s.
  • Several data quality studies have shown the high quality of routinely collected registers.
  • Data protection allows research use of register data.
important registers in the nordic countries
Important registers in the Nordic countries
  • Cancer register 1940s
  • Registers on infectious diseases 1950s
  • Hospital discharge registers 1960s
  • Cause-of-death registers 1960s
  • Birth and malformation registers 1960s
  • Register-based Census 1990s
  • Health care quality registers 1990s
  • Prescription registers 1990s
  • Hospital outpatient registers 1990s
unique registers and data in the nordic countries
Unique registers and data in the Nordic countries
  • IVF (in vitro fertilization) register, Denmark
  • Register on induced abortions and sterilisations, Finland
  • Register on visual impairments, Finland
  • Register on breast and cervical cancer screening, Finland
  • Multiple generation register, Sweden
  • Multiple generation studies in the Norwegian Medical Birth Register
  • Biobanks in all Nordic countries + possibilities to link them to other registers.
important registers for studies in psychiatry and mental health
Important registers for studies in psychiatry and mental health
  • Hospital discharge registers 1960s
  • Cause-of-death registers 1960s
  • Pension Registers 1960s
  • Register-based Census 1990s
  • Prescription registers 1990s
  • Hospital outpatient registers 1990s
examples of register based studies in psychiatry and mental health
Examples of register-based studies in psychiatry and mental health
  • Register-based studies:
    • Cross-sectional studies
    • Trends
    • Longitudinal studies
  • Combination of data from different sources:
    • Medical records
    • Questionnaires
    • Biobank material
example 1 life expectancy among psychiatric patients
Example 1: Life expectancy among psychiatric patients
  • Registers:
    • THL: Hospital Discharge Register 1980-2003
    • Finnish Centre of Pension: Pension Register 1980-2003
    • Statistics Finland: Cause-of-Death Register 1981-2003
  • Data:
    • The data included 361 898 persons aged 15 years or more
    • 17 638 persons with dementia and 2 630 with intellectual disability were excluded
  • Life expectancy at 15 years and for ages 15-64 years were calculated separately by using Wiesler\'s method.
conclusions
Conclusions
  • Life expectancy at 15 years has increased among Finnish population with hospital discharge or pension due to mental disorders between 1981 and 2003:
    • Finland: +3.5 years, psychiatric patients +5.8 years
      • F30-39: +10 years, F40-49: +8 years, F20-29: +6 years, but
      • F10-19: -0.6 years
  • Risk for death
    • diseases and medical conditions 2-fold
    • external causes and poisoning 6-fold
  • Similar results from other Nordic countries.
example 2 maternal smoking and children s f diagnoses
Example 2: Maternal smoking and children’s F-diagnoses
  • Registers:
    • THL: Medical Birth Register 1987-1989
    • THL: Hospital Discharge Register 1987-2007
    • Social Insurance Institute: Reimbursed psychotropic medicine 1994-2007
    • Statistics Finland: Cause-of-Death registers 1987-2008
  • Data:
    • Children born in 1987-1989, excluding perinatal deaths, multiples, and children with major congenital anomalies
    • Final study population: 175 869 children (94.4%)
risk for adverse psychiatric outcomes by maternal smoking
Risk for adverse psychiatric outcomes by maternal smoking

Adjusted by maternal age, parity, sex, gestational age, birth weight, 5 minute Apgar score and

maternal psychiatric diagnosis before birth.

conclusions1
Conclusions
  • Children exposed to maternal smoking has an increased risk for receiving a F-diagnosis in inpatient or outpatient care in childhood and adolescent.
  • The increased risk can be observed for all diagnosis excluding schizophrenia and anorexia.
  • Register studies cannot confirm the real effect of smoking.
    • However, a recent local study in Turku has shown that prenatal smoking exposure is associated with smaller regional brain volumes in preterm infants (Ekblad et al., J Pediatrics 2009).
example 3 use of psychotropic drugs and pregnancy outcomes
Example 3: Use of psychotropic drugs and pregnancy outcomes
  • Registers:
    • The ‘Drug and Pregnancy’ -database 1996-2006, to be annually completed 2007 onwards
  • Data:
    • All births in the Medical Birth Register
    • All induced abortions in the Abortion Register
    • All congenital anomalies in the Malformation Register
      • Use of prescribed & reimbursed drugs (Social Insurance Institution)
        • 3 months before pregnancy
        • during pregnancy
        • 3 months after pregnancy
the use of psychotropic medicine before the pregnancy starts
The use of psychotropic medicine before the pregnancy starts
  • The Drug and Pregnancy -database 1996-2006:
    • Total 622 671 births and 117 229 induced abortions
    • Excluded: induced abortions due to fetal reasons
    • Separate analysis: first pregnancies
  • All drug purchases 3 months before pregnancy were used as a proxy measure of mental health disorders.
conclusions2
Conclusions
  • Measured by the use of psychotropic medicine, women’s pre-existing mental health status is worse for women having an induced abortion than for women giving a birth.
    • All pregnancies: Adjusted OR 1.94 (95% CI 1.87-2.02)
    • First pregnancies: Adjusted OR 1.56 (95% CI 1.44-1.68)
    • Highest risk for women using hypnotics and sedatives, antipsychotics and antidepressants.
  • This essential confounding factor should not be neglected when investigating the occurrence of pregnancy-related mental health problems.
example 4 mothers and children s long term follow up after substance abuse during pregnancy
Example 4: Mothers’ and children’s long-term follow-up after substance abuse during pregnancy
  • Basic data:
    • 524 women followed-up prenatally at special out-patient clinics and a control group of 1792 women matched for maternal age, parity, time and place of delivery.
  • Registers:
    • THL: Medical Birth Register, Hospital Discharge Register, Child Welfare Register
    • Statistics Finland: Cause-of-Death Register
    • Social Insurance Institution: Information on prescribed medicine, social benefits, pensions and rehabilitations
mothers outcome
Mothers’ outcome, %

Cases Controls

  • Death 8.0 0.2 ***
  • F-diagnosis, inpatient 46.0 3.6 ***
  • F-diagnosis, outpatient 47.1 8.3 ***
  • Intoxication care 41.3 1.8 ***
  • Pensions, any cause 16.8 2.2 ***
  • Rehabilitation, any cause 9.5 5.6 ***
  • Special reimbursement 27.0 18.4 ***
    • Psychosis 10.9 1.4 ***
  • Drug reimbursement N05 71.4 20.9 ***
  • Drug reimbursement N06 68.1 26.5 ***
children s outcome
Children’s outcome, %

Cases Controls

  • Death 1.4 1.0 NS
  • F-diagnosis, inpatient 7.1 2.8 ***
  • F-diagnosis, outpatient 8.1 2.6 ***
  • Care benefit for sick child 25.0 13.9 ***
  • Rehabilitation, any cause 5.1 2.4 ***
  • Special reimbursement 12.1 11.1 NS
  • Drug reimbursement N05 9.1 5.6 **
  • Drug reimbursement N06 4.6 1.4 ***
  • Child taken into custody 46.0 2.4 ***
conclusions3
Conclusions
  • Combination of medical records and registers was feasible, even though it was difficult to get all the necessary permissions.
  • Women with substance abuse displayed significant long-term abuse-related morbidity and mortality, rehabilitation, early retirement, and use of prescribed medicine.
  • Also their children had increased morbidity, rehabilitation, and use of prescribed medicine, and almost half of them were taken into custody.
why register research
Why register research?
  • Easy to form data:
    • cross-sectional studies
    • longitudinal studies (history, follow-up)
  • Easy to repeat the same study.
  • No limitations for sample size (rare cases --- total population).
  • Population-based studies feasible.
  • No need to contact patients.
  • Follow-up relatively easy.
  • No participation bias nor research bias.
  • No reporting bias.
problems related to register research
Problems related to register research
  • The data is unavailable
    • primary health care, diseases and conditions not requiring a contact to health care system, self-rated health, opinions, experiences,...
  • Data protection: are such studies possible in general?
  • Ethically controversial topics:
    • abortion, miscarriage, infertility, malformations, psychiatric disorders, family studies, contact to relatives of a death patient, genetics…
  • High data costs: Statistical offices, Central Population Register
  • Data overload syndrome
    • Too much data, too little time…?
  • Fishing:
    • Easy to find statistically significant results, if the data is large.
finally
Finally
  • Register-based studies seems to be feasible, e.g. for cross-sectional, longitudinal and trend studies
  • Combination of data from other registers and from other sources, such as medical records, questionnaires and even biobank material is possible.
  • Data protection questions have not been an issue, at least until now.
  • The lack of information from primary health care will be solved after the national electronic patient journal system is in use.
promotion of register research
Promotion of register research
  • Denmark: National Centre for Register-based Research, Århus Universitet http://www.ncrr.dk/
  • Finland: Finnish Information Centre for Register Research http://www.rekisteritutkimus.fi/
  • Norway: Special issue on register-based research in Norsk Epidemiologi 14 (1): 2004.
  • Sweden: Grants for register-based research by the National Board of Welfare and Health (Social-styrelsen)
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