Levendefødte i Norge 1967-76 med diagnosen Down syndrom – en registerstudie
DOI:
https://doi.org/10.5324/nje.v17i2.157Abstract
Diagnoser av Down syndrom registrert i Medisinsk fødselsregister (MFR) er sammenholdt med diagnoser registrert i stønadsregistrene i Ny arbeids- og velferdsetat (NAV), tidligere Rikstrygdeverket for alle levendefødte i årene 1967-76, i alt 629 928. Formålet med studien har vært å vurdere hvor ofte diagnosen Down syndrom registreres i MFR i forhold til forekomsten av tilstanden og validiteten av diagnosene, og å følge opp sannsynlige tilfeller av Down syndrom til ung voksen alder i forhold til overlevelse, utdanning, arbeidsaktivitet, uførepensjonering og familiedannelse. Oppfølgingen er muliggjort ved registerkoblinger, godkjent av Datatilsynet og utført av Statistisk sentralbyrå. Totalt var diagnosen Down syndrom registrert i 784 tilfeller, 1,25 per 1000 levendefødte, noe høyere for gutter, 1,31, enn for piker 1,19. Falske positive i MFR utgjorde 4,9 prosent mens falske negative er anslått til 27,8 prosent. Det vil si at 72,2 prosent av Down syndrom tilfellene blir diagnostisert ved fødsel og registrert i MFR. Dette anslag er beheftet med atskillig usikkerhet. Usikkerheten skyldes omfanget av fosterindisert abort, uensartet diagnostikk, varierende meldefrekvens og mangelfull registrering. Å redusere usikkerheten ville kreve systematisk tilgang til relevante helseregistre og at helsevesenets samlede kunnskap om personer med definerte lidelser kan innhentes løpende. Personvern, slik dette forståes og praktiseres i dag, vil sannsynligvis hindre en slik løsning. En systematisk oppfølging er imidlertid viktig for velferden for utsatte grupper i vårt samfunn. I foreliggende undersøkelse kan det dokumenteres at personer med Down syndrom ikke oppnår den arbeidsaktivitet som utdanningen de har gjennomført skulle tilsi. At noen få tilfeller ikke synes å være uførepensjonert før 30-års alderen kan også være et interessant funn. En avklaring på dette forhold kunne gi nyttig informasjon for velferdsarbeidet for personer med Down syndrom.
The purpose of the present study was to investigate reliability and validity of the diagnoses of Down syndrome in the Medical Birth Registry of Norway (MBRN). In addition we wanted to perform a follow-up of persons who most likely had Down syndrome with respect to survival, education, participation in the labor force and income. The material comprises all live born registered in MBRN during the years 1967-76, a total of 626 928 infants. Diagnoses of Down syndrome in MBRN (N=593) were collated with diagnoses in the benefit registries of the National Insurance Administration (NAV) (N=574). Additional information for the follow-up was provided by matching with a number of national registries: Central Population Register (survival, immigration), Education register of Statistics Norway, NAV’s Register of annual income and Norwegian Armed Forces personnel data base (conscription, military service). Using two sources of the diagnoses of Down syndrome still left considerable uncertainty in estimating the prevalence of the condition. About 72 per cent of the cases were registered in MBRN. In the follow-up Down syndrome cases were found to have an especially high mortality during the first years of life. Their educational achievement was less. Even with especially adapted education, which most of the Down syndrome cases had received, they failed to become economically active to any appreciable extent. Most of them received disability pension before they were 30 years. The few who did not are interesting and their situation should be further explored
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