Comparing two measures of quality of life for children with haemophilia: the CHO‐KLAT and the Haemo‐QoL

Abstract

Disease-specific measures of quality of life (QoL) for children with haemophilia are now available for use in clinical studies [Haemophilia, 10, 2004, 9-16]. One of these measures, the Canadian Haemophilia Outcomes - Kids' Life Assessment Tool (CHO-KLAT), was developed in Canada with emphasis on the perspectives of children [Pediatr Blood Cancer, 47, 2006, 305-11; Haemophilia, 10, 2004, 34-43]. Another, the Haemo-QoL, was developed in Europe, with emphasis on the perspectives of clinicians [Haemophilia, 8, 2002, 47-54; Haemophilia, 10, 2004, 17-25]. While these two measures are unique and independent, researchers from both studies were collaboratively linked throughout development and testing. This study presents the results of a joint assessment of the two measures with respect to their strengths, limitations and unique contributions. The primary questions addressed were: 1 What is the relationship between the CHO-KLAT and the Haemo-QoL in terms of summary scores and item content? 2 What are the methodological strengths, limitations and unique contributions of each measure? We conducted a retrospective analysis of data from field testing of both measures. The analysis included a comparative assessment of the basic validity, reliability and items used in each measure. Overall, the CHO-KLAT and the Haemo-QoL are promising and valuable measures of QoL for children with haemophilia. Our analyses confirmed the basic psychometric properties of both tools, but identified some discrepancies between them. Additional data will allow for greater understanding of these discrepancies and lend clarity to how the tools should be used in clinical studies (separately or merged). The present recommendation is that the measures be run independently, but preferably concurrently in studies of children with haemophilia.

Quality of Life in Hemophilia

“…These psychosocial predictors varied across countries, although life satisfaction and social support explained the highest proportion of variance [101]. In a paper by Bradley et al, differences and similarities among the European Haemo-QoL and the Canadian CHO-KLAT have been described [103]. In a paper by Bradley et al, differences and similarities among the European Haemo-QoL and the Canadian CHO-KLAT have been described [103].…”

Effect of Acute Bleeding on Daily Quality of Life Assessments in Patients with Congenital Hemophilia with Inhibitors and Their Families: Observations from the Dosing Observational Study in Hemophilia

“…Hemophilia-specific tests may provide more sensitive analyses that can supplement the use of standard measures. There are only a few disease-specific QOL parameters, however, and most have been recently developed [23][24][25][26]. The hemophilia-specific health-related QOL questionnaire was originally made available for use among children and adolescents [23,25], and a separate version has been developed independently for adults [26].…”

Health‐related quality of life assessment in haemophilia patients on prophylaxis therapy: a systematic review of results from prospective clinical trials

“…Sub-analysis in good responders: Compared to OD, mean improvements in SF-36v2 scores for PCS (P better general health following regular factor replacement or bypassing agent therapy. [48] Emphasizes perspective of children [47] Scores range from 0 to 100 with higher scores indicating better HRQoL Haemophilia-specific: Adults HAEM-A-QoL 4 [11,24,29,30] Physical health, Feelings, View of yourself, Sport and leisure, Work and school, Dealing with haemophilia, Treatment, Future, Family planning, Partnership and sexuality 46-item, psychometrically-based, self-administered questionnaire for adults Items were derived from patient-focused groups and expert clinicians Demonstrated good discriminant validity for haemophilia severity and infection [38] High convergence with the SF-36 [38] Scores range from 0 to 100 with lower scores indicating better HRQoL HAEM-QOL-A 2 [12,16] Physical Functioning, Role Functioning, Worry, Consequences of Bleeding, Emotional Impact, Treatment Concerns 41-item, self-administered questionnaire for adults Discriminated between adults with different haemophilia severity and HIV status in validation study [49] Physical Functioning subscale discriminated between patients receiving prophylaxis vs. those treated on-demand [49] *The original version of the SF-36 (SF-36v1) was revised in 1996. Clinically meaningful mean improvement in the baseline EQ-VAS was observed from baseline following prophylaxis at 3 years, but not in the on-demand arm [28].…”