Pediatric acquired demyelinating syndromes: a nationwide validation study of the Danish National Patient Register
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Pediatric acquired demyelinating syndromes : a nationwide validation study of the Danish National Patient Register. / Boesen, Magnus Spangsberg; Magyari, Melinda; Born, Alfred Peter; Thygesen, Lau Caspar.
I: Clinical Epidemiology, Bind 10, 2018, s. 391-399.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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TY - JOUR
T1 - Pediatric acquired demyelinating syndromes
T2 - a nationwide validation study of the Danish National Patient Register
AU - Boesen, Magnus Spangsberg
AU - Magyari, Melinda
AU - Born, Alfred Peter
AU - Thygesen, Lau Caspar
PY - 2018
Y1 - 2018
N2 - Objective: To validate the Danish National Patient Register's (NPR) diagnoses of pediatric acquired demyelinating syndromes (ADS) including multiple sclerosis (MS).Study design and setting: We identified ADS diagnostic groups using International Classification of Diseases (ICD) codes and reviewed medical records to validate the NPR diagnoses during 2008-2015.Results: Among 409 children in the study, 184 children had a validated and final ADS diagnosis after reviewing medical records as follows: optic neuritis (ON; n=46), transverse myelitis (TM; n=16), acute disseminated encephalomyelitis (ADEM; n=50), clinically isolated syndrome (CIS) including dissemination in space (CIS [DIS]) but not dissemination in time (n=6), neuromyelitis optica spectrum disorder (NMOsd; n=5), and MS (n=61). During the mean follow-up of 4.6 years, 33% of children initially diagnosed with monophasic ADS progressed to MS. Positive predictive value (PPV) was 0.71 (95% confidence interval [CI] =0.62-0.80) for ON, 0.64 (95% CI =0.43-0.82) for TM, 0.93 (95% CI =0.84-0.98) for MS, 0.27 (95% CI =0.19-0.35) for CIS, 0.43 (95% CI =0.10-0.82) for NMOsd, and 0.15 (95% CI =0.10-0.20) for ADEM. Assuming complete coverage for non-MS ADS, the sensitivity was 0.99 (95% CI =0.93-1.00) for ON, 0.83 (95% CI =0.36-1.00) for CIS (DIS), and 0.80 (95% CI =0.56-0.94) for TM, but only 0.58 (95% CI =0.43-0.72) for ADEM and 0.60 (95% CI =0.15-0.95) for NMOsd.Conclusion: PPV was high for MS and considered acceptable for ON and TM; therefore, these ICD revision 10 (ICD-10) codes from the NPR are useful for epidemiological studies. Conversely, PPV was low for CIS and ADEM; NMOsd was inconclusive.
AB - Objective: To validate the Danish National Patient Register's (NPR) diagnoses of pediatric acquired demyelinating syndromes (ADS) including multiple sclerosis (MS).Study design and setting: We identified ADS diagnostic groups using International Classification of Diseases (ICD) codes and reviewed medical records to validate the NPR diagnoses during 2008-2015.Results: Among 409 children in the study, 184 children had a validated and final ADS diagnosis after reviewing medical records as follows: optic neuritis (ON; n=46), transverse myelitis (TM; n=16), acute disseminated encephalomyelitis (ADEM; n=50), clinically isolated syndrome (CIS) including dissemination in space (CIS [DIS]) but not dissemination in time (n=6), neuromyelitis optica spectrum disorder (NMOsd; n=5), and MS (n=61). During the mean follow-up of 4.6 years, 33% of children initially diagnosed with monophasic ADS progressed to MS. Positive predictive value (PPV) was 0.71 (95% confidence interval [CI] =0.62-0.80) for ON, 0.64 (95% CI =0.43-0.82) for TM, 0.93 (95% CI =0.84-0.98) for MS, 0.27 (95% CI =0.19-0.35) for CIS, 0.43 (95% CI =0.10-0.82) for NMOsd, and 0.15 (95% CI =0.10-0.20) for ADEM. Assuming complete coverage for non-MS ADS, the sensitivity was 0.99 (95% CI =0.93-1.00) for ON, 0.83 (95% CI =0.36-1.00) for CIS (DIS), and 0.80 (95% CI =0.56-0.94) for TM, but only 0.58 (95% CI =0.43-0.72) for ADEM and 0.60 (95% CI =0.15-0.95) for NMOsd.Conclusion: PPV was high for MS and considered acceptable for ON and TM; therefore, these ICD revision 10 (ICD-10) codes from the NPR are useful for epidemiological studies. Conversely, PPV was low for CIS and ADEM; NMOsd was inconclusive.
U2 - 10.2147/CLEP.S156997
DO - 10.2147/CLEP.S156997
M3 - Journal article
C2 - 29692631
VL - 10
SP - 391
EP - 399
JO - Clinical Epidemiology
JF - Clinical Epidemiology
SN - 1179-1349
ER -
ID: 217249584