A recently published paper by Canadian researchers demonstrates the validity and reliability of a quality of life (QoL) measurement tool customized for boys with hemophilia. Development of the Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool (CHO-KLAT), which began in 1999, was a cooperative effort involving staff from multiple Canadian hemophilia clinics, patients and family members.
“It is important to measure the QoL of boys with haemophilia, because the diagnosis has a significant impact on their lives and this impact fluctuates over time,” stated the study authors. “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.”
In all, 52 children with moderate or severe hemophilia ages 4-18 years and their parents were given a questionnaire with 79 items, a version of CHO-KLAT. Questions were designed to measure the following QoL areas: physical and social functioning, emotional well-being, satisfaction of treatment and overall care, impairments and healthcare needs and perceived health.
A detailed analysis of the validity and reliability of CHO-KLAT summary scores led authors to
streamline the list to 35 “strongly performing” items that could be used in future hemophilia QoL assessments. Although the authors concluded that providers should not base actual treatment decisions on these kinds of measurements, they did report that supplemental information drawn from CHO-KLAT may complement established clinical management practices.
The study, “How well does the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool (CHO-KLAT) measure the quality of life of boys with haemophilia?” was published in the September 2006 issue of Pediatric Blood and Cancer.
The project was supported through grants from the Canadian Haemophilia Society and the Association of Haemophilia Clinic Directors of Canada.
Source: Health & Medicine Week, October 2, 2006