tailieunhanh - báo cáo hóa học: " A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease"

Tuyển tập các báo cáo nghiên cứu về sinh học được đăng trên tạp chí hóa học quốc tế đề tài : A psychometric evaluation of the PedsQL™ Family Impact Module in parents of children with sickle cell disease | Health and Quality of Life Outcomes BioMed Central Research A psychometric evaluation of the PedsQL Family Impact Module in parents of children with sickle cell disease Julie A Panepinto 1 2 Raymond G Hoffmann1 3 and Nicholas M Pajewski4 Open Access Address Department of Pediatrics The Children s Research Institute of the Children s Hospital of Wisconsin Medical College of Wisconsin Milwaukee WI USA 2Hematology Oncology Bone Marrow Transplantation Medical College of Wisconsin Milwaukee WI USA 3Quantitative Health Sciences Medical College of Wisconsin Milwaukee WI USA and 4Section on Statistical Genetics Department of Biostatistics University of Alabama at Birmingham Birmingham AL USA Email Julie A Panepinto - jpanepin@ Raymond G Hoffmann - rhoffmann@ Nicholas M Pajewski - npajewski@ Corresponding author Published 16 April 2009 Received 12 November 2008 Health and Quality of Life Outcomes 2009 7 32 doi 1477-7525-7-32 Accepted 16 April 2009 This article is available from http content 7 1 32 2009 Panepinto et al licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License http licenses by which permits unrestricted use distribution and reproduction in any medium provided the original work is properly cited. Abstract Background Caring for a child with a chronic condition such as sickle cell disease can have a significant impact on parents and families. In order to provide comprehensive care and support to these families psychometrically sound instruments are needed as an initial step in measuring the impact of chronic diseases on parents and families. We sought to evaluate the psychometric properties of the PedsQL Family Impact Module in populations of children with and without sickle cell disease. In addition we sought to determine the correlation between parent s well being and their proxy report of their child s .