Psychometric field study of the new haemophilia quality of life questionnaire for adults: The ‘Hemofilia‐QoL’

Abstract

Although there is a worldwide interest in the assessment of health-related quality-of-life (HRQoL) in haemophilia patients, no non-disease specific instruments (for adults) are readily available. In this paper, a haemophilia-specific quality-of-life assessment measure for adults (the Hemofilia-QoL questionnaire) has been developed and tested for psychometric properties in 121 adults with haemophilia living in Spain. The Hemofilia-QoL questionnaire is a self-report modular instrument that assesses nine relevant HRQoL domains for patients with haemophilia (e.g. physical health, daily activities, joint damage, pain, treatment satisfaction, treatment difficulties, emotional functioning, mental health, relationships and social activity). Psychometric examination involved the assessment of data quality, scaling assumptions, reliability (internal consistency and test-retest) and validity (concurrent; external clinical criterion and sensitivity). The Hemofilia-QoL 36-item version questionnaire had acceptable internal consistency and retest reliability values. The questionnaire shows excellent concurrent validity (with the SF-36 Health Survey) and external clinical criterion validity (haemophilia clinical status) and sensitivity (health status changes) as well. The Hemofilia-QoL is now available for adult assessment and is ready for use in clinical research in Spain.

Manual therapy in the treatment of ankle hemophilic arthropathy. A randomized pilot study

“…Perception of quality of life was assessed through a specific questionnaire on hemophilia: A36 Heamophilia-QoL questionnaire (Remor et al, 2005). Radiographic assessment of articular changes was examined through the Pettersson scale (Pettersson, Ahlberg, and Nilsson, 1980) which assesses osteoporosis, widened epiphyseal, irregularity of the chondral surface, joint space narrowing, subchondral cyst formation, joint margins erosion, joint incongruence and joint deformity.…”

Recognizing the need for personalization of haemophilia patient‐reported outcomes in the prophylaxis era

“…Inconsistencies have been observed in the use of some response options [3,32] and, as commonly observed in a paediatric population, parent-proxy results were more reproducible than the children's results [36]. In addition, there is also the Hemofilia-QoL, a 36-item questionnaire that has demonstrated acceptable reliability and adequate convergent validity with the SF-36 Health Survey [31]. However, similar to CHO-KLAT and HaemQoL, it does not meet the FDA criterion of using direct input from patients to generate item content [3] and its use is limited to Spanish-speaking populations [31,38].…”

“…A number of haemophilia-specific HRQoL questionnaires have also been developed and used successfully in clinical studies, including the HaemoQoL-A [30,31] and HaemoQoL [32,33], Canadian Haemophilia Outcomes-Kids Life Assessment (CHO-KLAT) and Hemofilia-QoL. These instruments are used to evaluate a patient's current life experience across physical, psychological and social domains.…”

“…In addition, there is also the Hemofilia-QoL, a 36-item questionnaire that has demonstrated acceptable reliability and adequate convergent validity with the SF-36 Health Survey [31]. However, similar to CHO-KLAT and HaemQoL, it does not meet the FDA criterion of using direct input from patients to generate item content [3] and its use is limited to Spanish-speaking populations [31,38].…”

The Influence of HIV, HCV and Inhibitors on the Quality of Life and Behavior of the Disease in Patients with Haemophilia: An Observational Study

“…This questionnaire show good values in terms of reliability (internal consistency and test-retest reliability) and validity. This has good concurrent validity with the SF-36 multi-purpose scale and is sensitive to changes in a patient's state of health [26].…”