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Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (pedhal)
W G Groen1, J van der Net, P J M Helders
1Child Development and Exercise Center, University Children's Hospital, University Medical Center Utrecht, Utrecht.
Insights
The pedhal, a new tool adapted from the Haemophilia Activities List (HAL), shows promise in measuring daily living limitations for children with haemophilia. It demonstrated good feasibility and reproducibility in a pilot study, suggesting it can assess functional status in pediatric patients.
Area of Science:
- Pediatric Hematology
- Rehabilitation Medicine
- Health Outcomes Research
Background:
- Children with hemophilia experience significant limitations in daily activities.
- Existing adult measures, like the Haemophilia Activities List (HAL), are not suitable for pediatric populations.
- There is a need for a validated instrument to assess functional limitations in children with hemophilia.
Purpose of the Study:
- To adapt the Haemophilia Activities List (HAL) for children with hemophilia, creating the pediatric hemophilia activities list (pedHAL).
- To evaluate the psychometric properties of the pedHAL, including feasibility, validity, and reproducibility.
- To establish the minimum age for pedHAL administration and assess its correlation with other health measures.
Main Methods:
- The pedHAL was developed by adapting the adult HAL and incorporating items from the Childhood Health Assessment Questionnaire (CHQ) and Activity Scale for Kids (ASK).
- Content was reviewed by healthcare professionals, patients, and parents.
- A pilot study involved 32 Dutch children to assess score distribution, construct validity (Spearman's rho), and test-retest reliability.
Main Results:
- The pedHAL is feasible for children aged 4 years and older.
- Pilot study participants demonstrated high functional status, with pedHAL scores at the upper end of the scale.
- Moderate correlations were found between pedHAL subscales and joint examination findings (rho = 0.42-0.63).
- Moderate-to-good correlations were observed with the CHQ-50 physical function subscale (rho = 0.48-0.74).
- Test-retest agreement was good, indicating reliable measurements.
Conclusions:
- The pedHAL is a promising tool for assessing functional limitations in children with hemophilia.
- Further validation in populations with higher disability levels is recommended to fully explore its psychometric properties.
- The pedHAL can provide valuable insights into the daily living capabilities of pediatric hemophilia patients.
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.
