How well does the Canadian haemophilia Outcomes‐Kids' Life Assessment Tool (CHO‐KLAT) measure the quality of life of boys with haemophilia?

It is important to measure the quality of life (QoL) of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time. A disease‐specific measure of QoL is required because the aspects of life that are affected by haemophilia may differ from those assessed by generic QoL measures. This paper describes the final phase of development of a disease‐specific measure of QoL for boys with haemophilia: the Canadian Haemophilia Outcomes‐Kids Life Assessment Tool (CHO‐KLAT).

[1]  V. Blanchette,et al.  Development of a health‐related quality of life measure for boys with haemophilia: the Canadian Haemophilia Outcomes – Kids Life Assessment Tool (CHO‐KLAT) , 2004, Haemophilia : the official journal of the World Federation of Hemophilia.

[2]  M. Bullinger,et al.  Development and testing of an instrument to assess the Quality of Life of Children with Haemophilia in Europe (Haemo‐QoL) , 2004, Haemophilia : the official journal of the World Federation of Hemophilia.

[3]  M. Bullinger,et al.  Pilot testing of the ‘Haemo‐QoL’ quality of life questionnaire for haemophiliac children in six European countries , 2002, Haemophilia : the official journal of the World Federation of Hemophilia.

[4]  Michael Seid,et al.  PedsQL™ 4.0: Reliability and Validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in Healthy and Patient Populations , 2001, Medical care.

[5]  E G Tuddenham,et al.  The hemophilias--from royal genes to gene therapy. , 2001, The New England journal of medicine.

[6]  J. Varni,et al.  The PedsQL: measurement model for the pediatric quality of life inventory. , 1999, Medical care.

[7]  Edward G. D. Tuddenham,et al.  The Molecular Genetics of Haemostasis and Its Inherited Disorders , 1994 .

[8]  H. Pettersson,et al.  Twenty‐five years' experience of prophylactic treatment in severe haemophilia A and B , 1992, Journal of internal medicine.

[9]  J. R. Landis,et al.  The measurement of observer agreement for categorical data. , 1977, Biometrics.

[10]  Jacob Cohen,et al.  The Equivalence of Weighted Kappa and the Intraclass Correlation Coefficient as Measures of Reliability , 1973 .

[11]  G W Torrance,et al.  Multi-attribute health status classification systems. Health Utilities Index. , 1995, PharmacoEconomics.

[12]  M. Bullinger.  Health related quality of life assessment in children : a review of the literature , 1995 .