Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (pedhal)
- 25 February 2010
- journal article
- research article
- Published by Wiley in Haemophilia
- Vol. 16 (2), 281-289
- https://doi.org/10.1111/j.1365-2516.2009.02136.x
Abstract
Summary. Worldwide, children with haemophilia suffer from limitations in performing activities of daily living. To measure such limitations in adults a disease-specific instrument, the Haemophilia Activities List (HAL), was created in 2004. The aim of this study was to adapt the HAL for children with haemophilia and to assess its psychometric properties. The structure and the main content were derived from the HAL. Additionally, items of the Childhood Health Assessment Questionnaire and the Activity Scale for Kids were considered for inclusion. This version was evaluated by health professionals (n = 6), patients (n = 4), and parents (n = 3). A pilot test in a sample of 32 Dutch children was performed to assess score distribution, construct validity (Spearman’s rho) and reproducibility. Administration of the pedhal was feasible for children from the age of 4 years onwards. The pedhal scores of the Dutch children were in the high end of the scale, reflecting a good functional status. Most subscales showed moderate associations with the joint examination (rho = 0.42–0.63) and moderate-to-good associations with the physical function subscale of the CHQ-50 (rho = 0.48–0.74). No significant associations were found for the pedhal and the subscales mental health and behaviour, except for the subscales leisure and sport and mental health (rho = 0.47). Test–retest agreement was good. The pedhal is a promising tool, but further testing in populations with a higher level of disability is warranted to study the full range of its psychometric properties.Keywords
This publication has 15 references indexed in Scilit:
- Aerobic Capacity in Children with HemophiliaThe Journal of Pediatrics, 2008
- Psychometric analysis of the Functional Independence Score in Haemophilia (FISH)Haemophilia, 2007
- Quality criteria were proposed for measurement properties of health status questionnairesJournal of Clinical Epidemiology, 2007
- When to use agreement versus reliability measuresJournal of Clinical Epidemiology, 2006
- Measuring patients’ perceptions on their functional abilities: validation of the Haemophilia Activities ListHaemophilia, 2006
- Assessing functional health status in adults with haemophilia: towards a preliminary core set of clinimetric instruments based on a literature search in Rheumatoid Arthritis and OsteoarthritisHaemophilia, 2005
- Participation in sports by Dutch persons with haemophiliaHaemophilia, 2000
- Measurement properties of the Activities Scale for KidsJournal of Clinical Epidemiology, 2000
- Statistical Methods For Assessing Measurement Error (Reliability) in Variables Relevant to Sports MedicineSports Medicine, 1998
- Measurement of health status in children with juvenile rheumatoid arthritisArthritis & Rheumatism, 1994