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

Young, Nancy L.; Bradley, Catharine S.; Wakefield, Cindy; Barnard, Dorothy; Blanchette, Victor S.; McCusker, Patricia

doi:10.1002/pbc.20618

Cited by 68 publications

(115 citation statements)

References 10 publications

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“…First, there is no HRQoL tool (disease specific or generic) that has been shown to discriminate between boys with severe disease on prophylaxis from boys with moderate/mild disease. This has been demon- strated in the original cohort [16] and now in this European cohort using the CHO-KLAT. Second, the CHO-KLAT and the Haemo-QoL compare favourably and yield results in boys with haemophilia that are more informative than generic HRQoL measures such as the PedsQL.…”

Section: Discussionmentioning

confidence: 95%

“…As a general rule, the average HRQoL score in these populations is 72-75 points out of a maximum of 100 points [16,25,26]. In this study, the average childreported CHO-KLAT scores for each country ranged from 72 to 83.…”

Section: Discussionmentioning

confidence: 98%

“…There are both child self-report and parent-proxy report versions. Canadian children report mean scores 74.6 (SD = 14.1) [16]. These scores are reliable over time (intra-class correlation coefficient = 0.75) and between children and their parents (intra-class correlation coefficient = 0.83) [16].…”

Section: Introductionmentioning

confidence: 96%

“…It is valid [16,17] and sensitive to clinically important change and can comprehensively assess the impact of interventions related to haemophilia on HRQoL in boys 4-18 years of age [16]. The CHO-KLAT contains 35 items and provides a single score ranging from 0 to 100 (optimum score).…”

Section: Introductionmentioning

confidence: 99%

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International cross‐cultural validation study of the Canadian Haemophilia Outcomes: Kids’ Life Assessment Tool

McCusker

Fischer

Holzhauer³

et al. 2014

Haemophilia

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Health-related quality of life (HRQoL) assessment is recognized as an important outcome in the evaluation of different therapeutic regimens for persons with haemophilia. The Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) is a disease-specific measure of HRQoL for 4 to 18-year-old boys with haemophilia. The purpose of this study was to extend this disease-specific, child-centric, outcome measure for use in international clinical trials. We adapted the North American English CHO-KLAT version for use in five countries: France, Germany, the Netherlands, Spain and the United Kingdom (UK). The process included four stages: (i) translation; (ii) cognitive debriefing; (iii) validity assessment relative to the PedsQL (generic) and the Haemo-QoL (disease-specific) and (iv) assessment of inter and intra-rater reliability. Cognitive debriefing was performed in 57 boys (mean age 11.4 years), validation was performed in 144 boys (mean age 11.0 years) and reliability was assessed for a subgroup of 64 boys (mean age 12.0 years). Parents also participated. The mean scores reported by the boys were high: CHO-KLAT 77.0 (SD = 11.2); PedsQL 83.8 (SD = 11.9) and Haemo-QoL 79.6 (SD = 11.5). Correlations between the CHO-KLAT and PedsQL ranged from 0.63 in Germany to 0.39 in the Netherlands and Spain. Test-retest reliability (concordance) for child self-report was 0.67. Child-parent concordance was slightly lower at 0.57. The CHO-KLAT has been fully culturally adapted and validated for use in five different languages and cultures (in England, the Netherlands, France, Germany and Spain) where treatment is readily available either on demand or as prophylaxis.

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Section: Discussionmentioning

confidence: 95%

Section: Discussionmentioning

confidence: 98%

Section: Introductionmentioning

confidence: 96%

Section: Introductionmentioning

confidence: 99%

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International cross‐cultural validation study of the Canadian Haemophilia Outcomes: Kids’ Life Assessment Tool

McCusker

Fischer

Holzhauer³

et al. 2014

Haemophilia

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“…8,9 The current version of the CHO-KLAT (version 2.0) contains 35 items and has two formats: one for child self-report, and the other for parent proxy- 10 and was the only haemophilia-specific HR-QoL measure to meet this requirement at the time of this study. Preliminary data from China suggest that CHO-KLAT scores were higher (better) in boys who received prophylaxis 3 times/week for >24 weeks, as compared to boys who were treated with on-demand therapy or who received twice weekly FVIII infusions.…”

Section: Introductionmentioning

confidence: 99%

Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO‐KLAT

Tang

et al. 2017

Haemophilia

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Introduction The treatment of haemophilia varies across countries and across regions within some countries. Similar variation has been observed in health‐related quality of life (HR‐QoL). Relatively little is known about the HR‐QoL of boys with haemophilia in China. Aim The aim of this study was to describe the HR‐QoL of boys with haemophilia in China using the Canadian Haemophilia Outcomes‐Kids Life Assessment Tool (CHO‐KLAT). Methods Boys (4‐18 years of age) with haemophilia and their parents were enroled in a cross‐sectional study. All parents/guardians of study subjects were requested to complete a CHO‐KLAT questionnaire during a clinic visit, and report on several other clinical and socioeconomic factors in the past year. Boys who were > 7 years also completed the CHO‐KLAT. Results A total of 269 parents of boys with haemophilia, from 13 hospitals in 12 provinces, were enroled during 2014. The boys ranged from 4.0 to 17.9 years of age; 91% had haemophilia A, most had moderate (52%) or severe (36%) disease, and most were receiving sub‐optimal on‐demand therapy or low‐dose prophylactic therapy. Child self‐report CHO‐KLAT scores were available for 171 boys ≥7 years of age and ranged from 24.2 to 85.3 with a mean of 57.6 (n = 171). Parent proxy‐reported CHO‐KLAT scores ranged from 25.0 to 88.7 with a mean of 55.1 (n = 269). Conclusion HR‐QoL scores in boys with haemophilia in China were substantially lower than reported from Canadian and European boys with haemophilia. Longer term prospective studies are required to examine the factors impacting the HR‐QoL for boys with haemophilia in China.

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Psychological interventions for people with hemophilia

Cassis¹,

Emiliani

Pasi³

et al. 2012

Cochrane Database of Systematic Reviews

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

Abstract: The CHO-KLAT(35) is a reliable and valid measure of QoL for boys with haemophilia.

Cited by 68 publications

References 10 publications

International cross‐cultural validation study of the Canadian Haemophilia Outcomes: Kids’ Life Assessment Tool

International cross‐cultural validation study of the Canadian Haemophilia Outcomes: Kids’ Life Assessment Tool

Describing the quality of life of boys with haemophilia in China: Results of a multicentre study using the CHO‐KLAT

Psychological interventions for people with hemophilia

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