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Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources

INTRODUCTION: Epidemiological surveillance of haemophilia through linkage of medical records within a US state has not been conducted in 20 years. AIM: The Indiana Haemophilia Surveillance Project aims to identify all persons with haemophilia who resided in Indiana in 2011‐2013 and to determine the...

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Autores principales: Okolo, Amanda I., Soucie, John Michael, Grosse, Scott D., Roberson, Christopher, Janson, Isaac A., Allen, Martha, Shapiro, Amy D.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6850020/
https://www.ncbi.nlm.nih.gov/pubmed/30924993
http://dx.doi.org/10.1111/hae.13734
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author Okolo, Amanda I.
Soucie, John Michael
Grosse, Scott D.
Roberson, Christopher
Janson, Isaac A.
Allen, Martha
Shapiro, Amy D.
author_facet Okolo, Amanda I.
Soucie, John Michael
Grosse, Scott D.
Roberson, Christopher
Janson, Isaac A.
Allen, Martha
Shapiro, Amy D.
author_sort Okolo, Amanda I.
collection PubMed
description INTRODUCTION: Epidemiological surveillance of haemophilia through linkage of medical records within a US state has not been conducted in 20 years. AIM: The Indiana Haemophilia Surveillance Project aims to identify all persons with haemophilia who resided in Indiana in 2011‐2013 and to determine the percentage of patients in Indiana cared for at a federally recognized haemophilia treatment centre (HTC). METHODS: A retrospective review of medical charts was conducted to identify haemophilia cases during the surveillance years. Case‐finding methods involved a variety of medical care resources including hospitals, administrative claims data and haematology/oncology clinic reports. RESULTS: In Indiana, 704 unique haemophilia cases were identified. Of those cases, 456 (64.8%) had factor VIII and 248 (35.2%) had factor IX deficiency. Among those with known severity levels (n = 685), 233 (34%) were severe, 185 (27%) were moderate, and 267 (39%) were mild. Overall, 81.7% of the haemophilia patients identified visited an HTC at least once during the three‐year study period, which was the requirement for being considered an HTC patient. Age‐adjusted prevalence for 2013 was 19.4 haemophilia cases per 100 000 males, 12.7 per 100 000 for factor VIII and 6.7 per 100 000 for factor IX. Incidence of haemophilia over the 10 years prior to the surveillance years was 1:3688 live male births in Indiana. During the surveillance years, 24 cases (3.4%) died. CONCLUSION: We observed higher incidence and prevalence of haemophilia in Indiana compared to previous national estimates, as well as higher HTC utilization among persons with haemophilia.
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spelling pubmed-68500202019-11-15 Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources Okolo, Amanda I. Soucie, John Michael Grosse, Scott D. Roberson, Christopher Janson, Isaac A. Allen, Martha Shapiro, Amy D. Haemophilia ORIGINAL ARTICLES INTRODUCTION: Epidemiological surveillance of haemophilia through linkage of medical records within a US state has not been conducted in 20 years. AIM: The Indiana Haemophilia Surveillance Project aims to identify all persons with haemophilia who resided in Indiana in 2011‐2013 and to determine the percentage of patients in Indiana cared for at a federally recognized haemophilia treatment centre (HTC). METHODS: A retrospective review of medical charts was conducted to identify haemophilia cases during the surveillance years. Case‐finding methods involved a variety of medical care resources including hospitals, administrative claims data and haematology/oncology clinic reports. RESULTS: In Indiana, 704 unique haemophilia cases were identified. Of those cases, 456 (64.8%) had factor VIII and 248 (35.2%) had factor IX deficiency. Among those with known severity levels (n = 685), 233 (34%) were severe, 185 (27%) were moderate, and 267 (39%) were mild. Overall, 81.7% of the haemophilia patients identified visited an HTC at least once during the three‐year study period, which was the requirement for being considered an HTC patient. Age‐adjusted prevalence for 2013 was 19.4 haemophilia cases per 100 000 males, 12.7 per 100 000 for factor VIII and 6.7 per 100 000 for factor IX. Incidence of haemophilia over the 10 years prior to the surveillance years was 1:3688 live male births in Indiana. During the surveillance years, 24 cases (3.4%) died. CONCLUSION: We observed higher incidence and prevalence of haemophilia in Indiana compared to previous national estimates, as well as higher HTC utilization among persons with haemophilia. John Wiley and Sons Inc. 2019-03-29 2019-05 /pmc/articles/PMC6850020/ /pubmed/30924993 http://dx.doi.org/10.1111/hae.13734 Text en © 2019 The Authors. Haemophilia Published by John Wiley & Sons Ltd This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle ORIGINAL ARTICLES
Okolo, Amanda I.
Soucie, John Michael
Grosse, Scott D.
Roberson, Christopher
Janson, Isaac A.
Allen, Martha
Shapiro, Amy D.
Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources
title Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources
title_full Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources
title_fullStr Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources
title_full_unstemmed Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources
title_short Population‐based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources
title_sort population‐based surveillance of haemophilia and patient outcomes in indiana using multiple data sources
topic ORIGINAL ARTICLES
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6850020/
https://www.ncbi.nlm.nih.gov/pubmed/30924993
http://dx.doi.org/10.1111/hae.13734
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