Burden of Illness for Neural Tube Defects: Canadian ...

PEDIATRICS AND NEONATAL NURSING ISSN 2377-1569

Research * Corresponding author Radek Wasiak , PhD

European Director and Senior Research Scientist Health Economics Evidera Metro Building 6th Floor, 1 Butterwick London W6 8DL, UK Tel. +44 20 8576 5000 Fax: +44 20 8576 5195 E-mail: [email protected]

Volume 2 : Issue 1 Article Ref. #: 1000PNNOJ2106

Article History Received: October 23rd, 2014 Accepted: February 7th, 2015 Published: February 10th, 2015

Open Journal

http://dx.doi.org/10.17140/PNNOJ-2-106

Burden of Illness for Neural Tube Defects: Canadian Perspective Gideon Koren1, Floortje van Nooten2, Randall Winnette2, Paige Church3, Radek Wasiak4*, Parvaneh Yazdani-Brojeni1, Min Hua Jen2, Dimitra Lambrelli4, Mark Jeddi5 and Marion Kissner6

1

The Motherisk Program, The Hospital for Sick Children, 555 University Ave, Toronto, ON M5G 1X8, Canada

2

Formerly of Evidera, Metro Building, 6th Floor, 1 Butterwick, London W6 8DL, UK

3

Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Toronto, ON M4N 3M5,

Canada 4

Evidera, Metro Building, 6th Floor, 1 Butterwick, London W6 8DL, UK

5

Formerly of Bayer Inc, Toronto, Canada

6

Bayer Pharma, Muellerstrasse 178, Berlin, Germany

ABSTRACT

Citation Koren G, Nooten Fv, Winnette R, et al. Burden of illness for neural tube defects: canadian perspective. Pediatr Neonatal Nurs Open J. 2015; 2(1): 26-36. doi: 10.17140/PNNOJ-2-106

Background: 1HXUDO7XEH'HIHFWV17'V DUHVHULRXVELUWKGHIHFWVRIZKLFK6SLQD%L¿GD6%  is the most common. This paper aims to provide an estimate of the burden of illness for patients ZLWK6%DQGWKHLUFDUHJLYHUVLQ&DQDGDWRDVVHVVWKHEHQH¿WRISULPDU\SUHYHQWLRQ Methods: Individuals with NTDs were recruited through a hospital in Toronto. Using the clinLF¶V GDWDEDVH LQGLYLGXDOV ZLWK 6% DQG FDUHJLYHUV ZHUH VFUHHQHG WR FRQ¿UP HOLJLELOLW\ 'DWD ZHUHFROOHFWHGXVLQJWKUHHW\SHVRITXHVWLRQQDLUHVVRFLRGHPRJUDSKLFUHVRXUFHXVHDQG4XDOLW\ RI/LIH4R/  Results: 2ITXHVWLRQQDLUHVVHQWLQGLYLGXDOVZLWK6%DQGFDUHJLYHUVUHVSRQGHG0RVW LQGLYLGXDOVZLWK6%KDGDOHVLRQLQWKHOXPEDUDUHD0RUHWKDQKDOIKDGSUHVHQFHRIK\GURFHSKDOXV,QWKHSDVW\HDUVKRVSLWDOLVDWLRQZDVWKHPRVWXVHGKHDOWKFDUHUHVRXUFHDQGPRVW YLVLWHGDXURORJLVWLQWKHSUHYLRXV\HDU&DUHJLYHUVUHSRUWHGYDULRXVKHDOWKFRQGLWLRQVUHVXOWLQJ IURPWKHLUUROHDVFDUHU4R/VFRUHVZHUHVWDQGDUGLVHGXVLQJD8QLWHG6WDWHVJHQHUDOSRSXODWLRQ 5HVXOWVGHPRQVWUDWHGWKDWLQGLYLGXDOVZLWK6%DUHORZHURQWKHSK\VLFDOFRPSRQHQWVFRUHEXW better on the mental component score. Conclusions: The burden associated with individuals with SB in Canada is considerable. Our VWXG\KLJKOLJKWVWKHQHHGIRUSULPDU\SUHYHQWLRQ KEYWORDS: %XUGHQRILOOQHVV1HXUDO7XEH'HIHFWV6SLQD%L¿GD+\GURFHSKDOXV5HVRXUFH XVH4XDOLW\RI/LIH&DQDGD ABBREVIATIONS: %0, %RG\ 0DVV ,QGH[ &, &RQ¿GHQFH ,QWHUYDO (4' (XUR 4R/  

Copyright ©2015 Wasiak R. This is an open access article distributed under the Creative Commons Attribution 4.0 International License (CC BY 4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Pediatr Neonatal Nurs Open J

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