Use of Register Data for Psychiatric Epidemiology in the Nordic Countries

Textbook in Psychiatric Epidemiology: Third Edition

Volumn , Issue , 2011, Pages 117-131

  Miettunen, Jouko ^a   Suvisaari, Jaana ^b   Haukka, Jari ^b   Isohanni, Matti ^a  

^a UNIVERSITY OF OULU   (Finland)

^b NATIONAL PUBLIC HEALTH INSTITUTE   (Finland)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 79958705258     PISSN: None     EISSN: None     Source Type: Book    
DOI: 10.1002/9780470976739.ch8     Document Type: Chapter

References (104)

1. Statistics Finland (2004) Use of Register and Administrative Data Sources for Statistical Purposes Best Practices of Statistics Finland. Statistics Finland Handbooks 45. Available in English www.stat.fi/tup/julkaisut/kasikirjoja_45_en.pdf (accessed 7 October 2010).
2. Gissler, M. and Haukka, J. (2004) Finnish health and social welfare registers in epidemiological research. Nor. Epidemiol., 14, 113-120.
3. Häfner, H. and der Heiden, W. (1986) The contribution of European case registers to research on schizophrenia. Schizophr. Bull., 12, 26-51.
4. Byrne, N., Regan, C. and Howard, L. (2005) Administrative registers in psychiatric research: a systematic review of validity studies. Acta Psychiatr. Scand., 112, 409-414.
5. Allebeck, P. and Wistedt, B. (1986) Mortality in schizophrenia. A ten-year follow-up based on the Stockholm County inpatient register. Arch. Gen. Psychiatry, 43, 650-653.
6. Bloor, R.N. (1995) Setting up a psychiatric case register. Adv. Psychiatr. Treat., 1, 86-91.
7. Wierdsma, A.I., Sytema, S., van Os, J.J. et al. (2008) Case registers in psychiatry: do they still have a role for research and service monitoring? Curr. Opin. Psychiatry, 21, 379-384.
8. de Graaf, R., Bijl, R.V., Smit, F., et al. (2000) Psychiatric and sociodemographic predictors of attrition in a longitudinal study. Am. J. Epidemiol., 152, 1039-1047.
9. Haapea, M., Miettunen, J., Veijola, J., et al. (2007) Non-participation may bias the results of a psychiatric survey. An analysis from the survey including magnetic resonance imaging within the Northern Finland 1966 Birth Cohort. Soc. Psychiatry Psychiatr. Epidemiol., 42, 403-409.
10. Munk-Jørgensen, P., Kastrup, M. and Mortensen, P.B. (1993) The Danish psychiatric register as a tool in epidemiology. Acta Psychiatr. Scand., 370, 27-32.
11. Cappelen, I. and Lyshol, H. (2004) An overview of the health registers in Norway (in Norwegian, with English abstract). Nor. Epidemiol., 14, 33-38.
12. Mortensen, P.B. (2004) Register-based research in Denmark. Nor. Epidemiol., 14, 121-124 (in Danish, with English abstract).
13. Otterblad Olausson, P., Spetz, C.L. and Rosén, M. (2004) A large use of register data in Swedish research - a Nordic competitive advantage. Nor. Epidemiol., 14, 125-128 (in Swedish).
14. Pajunen, P., Koukkunen, H., Ketonen, M., et al. (2005) The validity of the Finnish Hospital discharge register and causes of death register data on coronary heart disease. Eur. J. Cardiovasc. Prev. Rehabil., 12, 132-137.
15. Isohanni,M.,Mäkikyrö, T.,Moring, J., et al. (1997) A comparison of clinical and research DSM-III-R diagnoses of schizophrenia in a Finnish national birth cohort. Soc. Psychiatry Psychiatr. Epidemiol., 32, 303-308.
16. Mäkikyrö, T., Isohanni,M., Moring, J., et al. (1998) Accuracy of register-based schizophrenia diagnoses in a genetic study. Eur. Psychiatry, 13, 57-62.
17. Arajärvi, R., Suvisaari, J., Suokas, J., et al. (2005) Prevalence and diagnosis of schizophrenia based on register, case record and interview data in an isolated Finnish birth cohort born 1940-1969. Soc. Psychiatry Psychiatr. Epidemiol., 40, 808-816.
18. Pihlajamaa, J., Suvisaari, J., Henriksson, M., et al. (2008) The validity of schizophrenia diagnosis in the Finnish hospital discharge register: findings from a 10-year birth cohort sample. Nord. J. Psychiatry, 62, 198-203.
19. Moilanen, K., Veijola, J., Läksy, K., et al. (2003) Reasons for the diagnostic discordance between clinicians and researchers in the Northern Finland 1966 Birth Cohort. Soc. Psychiatry Psychiatr. Epidemiol., 38, 305-310.
20. Taiminen, T., Ranta, K., Karlsson, H., et al. (2001) Comparison of Clinical and best-estimate research DSM-IV diagnoses in a Finnish sample of firstadmission psychosis and severe affective disorder. Nord. J. Psychiatry, 55, 107-111.
21. Kristjansson, E., Allebeck, P. and Wistedt, B. (1987) Validity of the diagnosis schizophrenia in a psychiatric inpatient register. Nord. Psykiatr. Tidsskr., 43, 229-234.
22. Löffler, W., Häfner, H., Fätkenheur, B., et al. (1994) Validation of Danish case register diagnosis for schizophrenia. Acta Psychiatr. Scand., 90, 196-203.
23. Dalman, C., Broms, J., Cullberg, J., et al. (2002) Young cases of schizophrenia identified in a national inpatient register. Soc. Psychiatry Psychiatr. Epidemiol., 37, 527-531.
24. Kieseppä, T., Partonen, T., Kaprio, J., et al. (2000) Accuracy of register- and record-based bipolar I disorder diagnoses in Finland - a study of twins. Acta Neuropsychiatr., 12, 106-109.
25. Ingelsson, E., Arnlöv, J., Sundström, J., et al. (2005) The validity of a diagnosis of heart failure in a hospital discharge register. Eur. J. Heart Fail., 7, 787-791.
26. Elo, S.L. and Karlberg, I.H. (2009) Validity and utilization of epidemiological data: a study of ischaemic heart disease and coronary risk factors in a local population. Public Health, 123, 52-57.
27. Flay, B.R. (1986) Efficacy and effectiveness trials (and other phases of research) in the development of health promotion programs. Prev. Med., 15, 451-474.
28. Lieberman, J.L., Stroup, T.S., McEvoy, J.P., et al. (2005) Effectiveness of antipsychotic drugs in patients with chronic schizophrenia. N. Engl. J. Med., 353, 1209-1223.
29. Gaist, D., Sørensen, H.T. and Hallas, J. (1997) The Danish prescription registries. Dan. Med. Bull., 44, 445-448.
30. Furu, K. (2008) Establishment of the nationwide Norwegian prescription database (NorPD) - new opportunities for research in pharmacoepidemiology in Norway. Nor. Epidemiol., 18, 129-136.
31. Glintborg, B., Hillestrom, P.R., Olsen, L.H., et al. (2007) Are patients reliable when self-reporting medication use? Validation of structured drug interviews and home visits by drug analysis and prescription data in acutely hospitalized patients. J. Clin. Pharmacol., 47, 1440-1449.
32. Haukka, J., Suvisaari, J., Tuulio-Henriksson, A., et al. (2007) High concordance between selfreported medication and official prescription database information. Eur. J. Clin. Pharmacol., 63, 1069-1074.
33. Haapea, M., Miettunen, J., Lindeman, S., et al. (2010) Concordance between self-reported and pharmacy data on medication use in the Northern Finland 1966 Birth Cohort. Int. J. Methods Psychiatr. Res., 19, 88-96.
34. Johansson, L.A. andWesterling, R. (2000) Comparing Swedish hospital discharge records with death certificates: implications for mortality statistics. Int. J. Epidemiol., 29, 495-502.
35. Lahti, R.A. and Penttilä, A. (2001) The validity of death certificates: routine validation of death certification and its effects on mortality statistics. Forensic Sci. Int., 115, 15-32.
36. Heilä, H., Haukka, J., Suvisaari, J., et al. (2005) Mortality among patients with schizophrenia and reduced psychiatric hospital care. Psychol. Med., 35, 725-732.
37. Haukka, J., Suominen, K., Partonen, T., et al. (2008) Determinants and outcomes of serious attempted suicide: a nationwide study in Finland, 1996-2003. Am. J. Epidemiol., 167, 1155-1163.
38. Holl, K., Lundin, E., Kaasila, M., et al. (2008) Effect of long-term storage on hormone measurements in samples from pregnant women: the experience of the Finnish maternity cohort. Acta Oncol., 47, 406-412.
39. Mortensen, P.B., Nørgaard-Pedersen, B., Lindum Waltoft, B., et al. (2007) Toxoplasma gondii as a risk factor for early-onset schizophrenia: analysis of filter paper blood samples obtained at birth. Biol. Psychiatry, 61, 688-693.
40. Bergem, A.L. (2002) Norwegian Twin Registers and Norwegian twin studies - an overview. Twin Res., 5, 407-414.
41. Kaprio, J. (2006) Twin studies in Finland 2006. Twin Res. Hum. Genet., 9, 772-777.
42. Lichtenstein, P., De Faire, U., Floderus, B., et al. (2002) The Swedish twin registry: a unique resource for clinical, epidemiological and genetic studies. J. Intern. Med., 252, 184-205.
43. Skytthe, A., Kyvik, K., Bathum, L., et al. (2006) The Danish Twin Registry in the new millennium. Twin Res. Hum. Genet., 9, 763-771.
44. Tienari, P., Wynne, L.C., Moring, J., et al. (2000) Finnish adoptive family study: sample selection and adoptee DSM-III-R diagnoses. Acta Psychiatr. Scand., 101, 433-443.
45. Rosenthal, D.,Wender, P.H., Kety, S.S., et al. (1971) The adopted-away offspring of schizophrenics. Am. J. Psychiatry, 128, 307-311.
46. David, A.S., Malmberg, A., Brandt, L., et al. (1997) IQ and risk for schizophrenia: a population-based cohort study. Psychol. Med., 27, 1311-1323.
47. Tiihonen, J., Haukka, J., Henriksson, M., et al. (2005) Premorbid intellectual functioning in bipolar disorder and schizophrenia: results from a cohort study of male conscripts. Am. J. Psychiatry, 162, 1904-1910.
48. Isohanni, I., Järvelin, M.-R., Nieminen, P., et al. (1998) School performance as a predictor of psychiatric hospitalization in adult life. A 28-year follow-up in the Northern Finland 1966 birth cohort. Psychol. Med., 28, 967-974.
49. Mortensen, P.B., Pedersen, C.B., Westergaard, T., et al. (1999) Effects of family history and place and season of birth on the risk of schizophrenia. N. Engl. J. Med., 340, 603-608.
50. Pedersen, C.B. andMortensen, P.B. (2001) Evidence of a dose-response relationship between urbanicity during upbringing and schizophrenia risk. Arch. Gen. Psychiatry, 58, 1039-1046.
51. Byrne, M., Agerbo, E., Ewald, H., et al. (2003) Parental age and risk of schizophrenia. A casecontrol study. Arch. Gen. Psychiatry, 60, 673-678.
52. Eaton, W.W., Byrne, M., Ewald, H., et al. (2006) Association of schizophrenia and autoimmune diseases: linkage of Danish national registers. Am. J. Psychiatry, 163, 521-528.
53. Westergaard, T., Mortensen, P.B., Pedersen, C.B., et al. (1999) Exposure to prenatal and childhood infections and the risk of schizophrenia. Suggestions from a study of sibship characteristics and influenza prevalence. Arch. Gen. Psychiatry, 56, 993-998.
54. Khashan, A.S., Abel, K.M., McNamee, R., et al. (2008) Higher risk of offspring schizophrenia following antenatal maternal exposure to severe adverse life events.Am. J. Psychiatry, 65, 146-152.
55. Bennedsen, B.E., Mortensen, P.B., Olesen, A.V., et al. (2001) Congenital malformations, stillbirths, and infant deaths among children of women with schizophrenia. Arch.Gen. Psychiatry, 58, 674-679.
56. King-Hele, S.A., Abel, K.M., Webb, R.T., et al. (2007) Risk of sudden infant death syndrome with parental mental illness. Am. J. Psychiatry, 64, 1323-1330.
57. Webb, R.T., Pickles, A.R., Appleby, L., et al. (2007) Death by unnatural causes during childhood and early adulthood in offspring of psychiatric inpatients. Arch. Gen. Psychiatry, 64, 345-352.
58. Madsen, K.M., Hviid, A., Vestergaard, M., et al. (2002) A population-based study of measles, mumps, and rubella vaccination and autism. N. Engl. J. Med., 347, 1477-1482.
59. Erlangsen, A., Canudas-Romo, V. and Conwell, Y. (2008) Increased use of antidepressants and decreasing suicide rates: a population-based study using Danish register data. J. Epidemiol. Community Health, 62, 448-454.
60. Oksbjerg Dalton, S., Mellemkjaer, L., Olsen, J.H., et al. (2002) Depression and cancer risk: a registerbased study of patients hospitalized with affective disorders, Denmark, 1969-1993. Am. J. Epidemiol., 155, 1088-1095.
61. Nordentoft, M., Breum, L., Munck, L.K., et al. (1993) High mortality by natural and unnatural causes: a 10 year follow up study of patients admitted to a poisoning treatment centre after suicide attempts. Br. Med. J., 306, 1637-1641.
62. Hiroeh, U., Appleby, L., Mortensen, P.B., et al. (2001) Death by homicide, suicide, and other unnatural causes in people with mental illness: a population-based study. Lancet, 358, 2110-2112.
63. Agerbo, E. (2007) High income, employment, postgraduate education, andmarriage: a suicidal cocktail among psychiatric patients. Arch. Gen. Psychiatry, 64, 1377-1384.
64. Qin, P., Mortensen, P.B. and Pedersen, C.B. (2009) Frequent change of residence and risk of attempted and completed suicide among children and adolescents. Arch. Gen. Psychiatry, 66, 628-632.
65. Munk-Jørgensen, P. and Mortensen, P.B. (1992) Incidence and other aspects of the epidemiology of schizophrenia in Denmark, 1971-1987. Br. J. Psychiatry, 161, 489-495.
66. Suvisaari, J.M., Haukka, J.K., Tanskanen, A.J., et al. (1999) Decline in the incidence of schizophrenia in Finnish cohorts born from 1954 to 1965. Arch.Gen. Psychiatry, 56, 733-740.
67. Perälä, J., Suvisaari, J., Saarni, S.I., et al. (2007) Lifetime prevalence of psychotic and bipolar I disorders in a general population. Arch. Gen. Psychiatry, 64, 19-28.
68. Haukka, J., Suvisaari, J., Varilo, T., et al. (2001) Regional variation in the incidence of schizophrenia in Finland: a study of birth cohorts born from 1950 to 1969. Psychol. Med., 31, 1045-1053.
69. Perälä, J., Saarni, S., Ostamo, A., et al. (2008) Geographic variation and sociodemographic characteristics of psychotic disorders in Finland. Schizophr. Res., 106, 337-347.
70. Tienari, P., Wynne, L.C., Sorri, A., et al. (2004) Genotype-environment interaction in schizophrenia-spectrum disorder. Long-term follow-up study of Finnish adoptees. Br. J. Psychiatry, 184, 216-222.
71. Cannon, T.D., Kaprio, J., Lönnqvist, J., et al. (1998) The genetic epidemiology of schizophrenia in a Finnish twin cohort. A population-based modeling study. Arch. Gen. Psychiatry, 55, 67-74.
72. Kieseppä, T., Partonen, T., Haukka, J., et al. (2004) High concordance of bipolar I disorder in a nationwide sample of twins. Am. J. Psychiatry, 161, 1814-1821.
73. Tiihonen, J., Lönnqvist, J., Wahlbeck, K., et al. (2006) Antidepressants and the risk of suicide, attempted suicide, and overall mortality in a nationwide cohort. Arch. Gen. Psychiatry, 63, 1358-1367.
74. Tiihonen, J., Wahlbeck, K., Lönnqvist, J., et al. (2006) Effectiveness of antipsychotic treatments in a nationwide cohort of patients in community care after first hospitalisation due to schizophrenia and schizoaffective disorder: observational followup study. Br. Med. J., 333, 224.
75. Tiihonen, J., Lönnqvist, J., Wahlbeck, K., et al. (2009) 11-year follow-up of mortality in patients with schizophrenia: a population-based cohort study (FIN11 study). Lancet, 374, 620-627.
76. Isohanni, M., Miettunen, J., Mäki, P., et al. (2006) Developmental pathways of schizophrenia from gestation to the course of illness. The Northern Finland 1966 Birth Cohort Study. World Psychiatry, 5, 168-171.
77. Moilanen, K., Jokelainen, J., Jones, P.B., et al. (2010) Deviant intrauterine growth and risk of schizophrenia: A 34-year follow-up of the Northern Finland 1966 Birth Cohort. Schizophr. Res., 124, 223-230.
78. Miettunen, J., Lauronen, E., Veijola, J., et al. (2007) Socio-demographic and clinical predictors of occupational status in schizophrenic psychoses - followup within the Northern Finland 1966 Birth Cohort. Psychiatry Res., 150, 217-225.
79. Kotila, M., Numminen, H., Waltimo, O., et al. (1998) Depression after stroke: results of the FINNSTROKE Study. Stroke, 29, 368-372.
80. Gissler, M., Hemminki, E. and Lönnqvist, J. (1996) Suicides after pregnancy in Finland, 1987-1994: register linkage study. Br.Med. J., 313, 1431-1434.
81. Ødegard, Ø. (1971) Hospitalized psychoses in Norway: time trends 1926-1965. Soc. Psychiatry, 6, 53-58.
82. Hansen, V., Arnesen, E. and Jacobsen, B.K. (1997) Total mortality in people admitted to a psychiatric hospital. Br. J. Psychiatry, 170, 186-190.
83. Strand, B.H. and Kunst, A. (2006) Childhood socioeconomic status and suicide mortality in early adulthood among Norwegian men and women. A prospective study of Norwegians born between 1955 and 1965 followed for suicide from 1990 to 2001. Soc. Sci. Med., 63, 2825-2834.
84. Tellnes, G., Mathisen, S., Skau, I., et al. (1992) Who is long-term sick-listed in Norway? From the project Evaluation of the follow-up of long-term sick-listed. Tidsskr. Nor. Laegeforen., 112, 2773-2778.
85. Hagen, K., Stovner, L.J., Skorpen, F., et al. (2008) COMT genotypes and use of antipsychotic medication: linking population-based prescription database to the HUNT study. Pharmacoepidemiol. Drug Saf., 17, 372-377.
86. Bramness, J.G., Furu, K., Engeland, A., et al. (2007) Carisoprodol use and abuse in Norway: a pharmacoepidemiological study. Br. J. Clin. Pharmacol., 64, 210-218.
87. Bramness, J.G., Hausken, A.M., Sakshaug, S., et al. (2005) Prescription of selective serotonin reuptake inhibitors 1990-2004. Tidsskr. Nor. Laegeforen., 125, 2470-2473.
88. Kringlen, E. (1968) An epidemiological-clinical twin study on schizophrenia. J. Psychiatr. Res., 6 (Suppl. 1), 49-63.
89. Lewis, G., David, A., Andreasson, S., et al. (1992) Schizophrenia and city life. Lancet, 340, 137-140.
90. Harrison, G., Fouskakis, D., Rasmussen, F., et al. (2003) Association between psychotic disorder and urban place of birth is not mediated by obstetric complications or childhood socio-economic position: a cohort study. Psychol. Med., 33, 723-731.
91. Andreasson, S., Allebeck, P., Engström, A., et al. (1987) Cannabis use and schizophrenia: a longitudinal study of Swedish conscripts. Lancet, 8574, 1483-1486.
92. Zammit, S., Allebeck, P., Andreasson, S., et al. (2002) Self reported cannabis use as a risk factor for schizophrenia in Swedish conscripts of 1969: historical cohort study. Br. Med. J., 325, 1199.
93. Hultman, C.M., Sparen, P., Takei, N., et al. (1999) Prenatal and neonatal risk factors for schizophrenia, affective psychosis, and reactive psychosis of early onset: case-control study. Br. Med. J., 318, 421-426.
94. Dalman, C., Allebeck, P., Cullberg, J., et al. (1999) Obstetric complications and the risk of schizophrenia. A longitudinal study of a national birth cohort. Arch. Gen. Psychiatry, 56, 234-240.
95. Dalman, C., Allebeck, P., Gunnell, D., et al. (2008) Infections in the CNS during childhood and the risk of subsequent psychotic illness: a cohort study of more than one million Swedish subjects. Am. J. Psychiatry, 165, 59-65.
96. MacCabe, J.H., Lambe, M.P., Cnattingius, S., et al. (2008) Scholastic achievement at age 16 and risk of schizophrenia and other psychoses: a national cohort study. Psychol. Med., 38, 1133-1140.
97. Lichtenstein, P., Yip, B.H., Björk, C., et al. (2009) Common genetic determinants of schizophrenia and bipolar disorder in Swedish families: a populationbased study. Lancet, 373, 234-239.
98. Tidemalm, D., Långström, N., Lichtenstein, P., et al. (2008) Risk of suicide after suicide attempt according to coexisting psychiatric disorder: Swedish cohort study with long-term follow-up. Br. Med. J., 337, a2205.
99. Kendler, K.S., Gatz,M., Gardner, C.O., et al. (2006) A Swedish national twin study of lifetime major depression. Am. J. Psychiatry, 163, 109-114.
100. Wigertz, A. and Westerling, R. (2001) Measures of prevalence: which healthcare registers are applicable?. Scand. J. Public Health, 29, 55-62.
101. Isohanni, M. and Tienari, P. (2005) Cluster a personality disorders: unanswered questions about epidemiological, evolutionary and genetic aspects, in Personality Disorders (eds M. Maj, H.S. Akiskal, J.E. Mezzich and A. Okasha), John Wiley & Sons, Inc., New York, pp. 87-89.
102. Hernán, M.A., Cole, S.R., Margolick, J., et al. (2005) Structural accelerated failure time models for survival analysis in studies with time-varying treatments. Pharmacoepidemiol. Drug Saf., 14, 477-491.
103. Stefansson, H., Sigurdsson, E., Steinthorsdottir, V., et al. (2002) Neuregulin 1 and susceptibility to schizophrenia. Am. J. Hum. Gen., 71, 877-892.
104. Stefansson, H., Rujescu, D., Cichon, S., et al. (2008) Large recurrent microdeletions associated with schizophrenia. Nature, 455, 232-236.