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Protocol - Hemophilia-specific Functional Ability - Child

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Description:

The Pediatric Haemophilia Activities List (PedHAL) is a disease-specific, self- or proxy-administered questionnaire that includes 53 multiple-choice items across seven domains: sitting/kneeling/standing (10 items), functions of the legs (11 items), functions of the arms (6 items), use of transportation (3 items), self-care (9 items), household tasks (3 items), and leisure activities and sports (11 items). Each item is rated on a 6-point scale, from 1 (impossible) to 6 (never), describing difficulty due to hemophilia in the past month. Scores from individual items can be summed to give a total score or component scores for upper extremity, basic lower extremity, and complex lower extremity activities. Higher scores indicate greater functional status. The questionnaire also includes 4 multiple-choice items assessing the use of adaptive and assistive devices. There is a parent report version for children ages 4-9.

Specific Instructions:

In comparison to generic (non-disease specific) health-related quality of life (HRQoL) measures, the Haemophilia Activities List may be more relevant when a more specific assessment of HRQoL issues related to hemophilia is required. A disease-specific measure may in some cases have increased ability to demonstrate differences between groups of patients with hemophilia (e.g., those on prophylactic factor infusions vs. those not on prophylactic infusions) compared to a generic measure. The PROMIS Profile 29 or EQ-5D-5L may be useful when assessment of generic HRQoL is appropriate (e.g., for those with less severe symptoms and when comparing to non-hemophilia populations).

Protocol:

Summary of the Pediatric Haemophilia Activities List (PedHAL)

The Pediatric Haemophilia Activities List (PedHAL) is a self- or proxy-administered questionnaire that includes 53 multiple-choice items across seven domains: sitting/kneeling/standing (10 items), functions of the legs (11 items), functions of the arms (6 items), use of transportation (3 items), self-care (9 items), household tasks (3 items), leisure activities and sports (11 items). Each item is rated on a 6-point scale from 1 (impossible) to 6 (never) describing difficulty due to hemophilia in the past month. Scores from individual items can be summed to give a total score or component scores for upper extremity, basic lower extremity, and complex lower extremity activities. Higher scores indicate greater functional status. The questionnaire also includes 4 multiple-choice items assessing the use of adaptive and assistive devices. There is a parent report version for children ages 4-9 and a self-report version for children and adolescents ages 8-18.

The Pediatric Haemophilia Activities List (PedHAL) may be obtained via the World Federation of Hemophilia (WFH) Network website: https://elearning.wfh.org/resource/pediatric-haemophilia-activities-list-pedhal-children-and-teenager-version. The scoring manual is available with the Haemophilia Activities List (HAL) questionnaire.

Protocol Name from Source:

Pediatric Haemophilia Activities List (PedHAL)

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs
None
Requirements
Requirement CategoryRequired
Major equipment No
Specialized training No
Specialized requirements for biospecimen collection No
Average time of greater than 15 minutes in an unaffected individual No
Mode of Administration

Self- or proxy-administered questionnaire

Life Stage:

Child, Adolescent

Participants:

Children and adolescents, ages 8–18

Selection Rationale

The Haemophilia Activities List (HAL) is a well-established, self-administered protocol that is easy to administer, score, and interpret.

Language

Dutch, Romanian

Standards
StandardNameIDSource
Common Data Elements (CDE) Hemophilia Pediatric Haemophilia Activity List Assessment Score 6706621 CDE Browser
Derived Variables

None

Process and Review

The Expert Review Panel has not reviewed this measure yet.

Source

The Pediatric Haemophilia Activities List (PedHAL) may be obtained via the World Federation of Hemophilia (WFH) Network website: https://elearning.wfh.org/resource/pediatric-haemophilia-activities-list-pedhal-children-and-teenager-version/.

The Haemophilia Activities List (HAL) may be obtained via the World Federation of Hemophilia (WFH) Network website: https://elearning.wfh.org/resource/haemophilia-activities-list-hal/.

Contact person:
Kathelijn Fischer, at the secretariat of the Van Creveldkliniek, University Medical Centre Utrecht:
vck-secretariaat@umcutrecht.nl

Tel.: +1 (514) 875-7944
Fax: +1 (514) 875-8916
Email: wfh@wfh.org

General References

Groen, W. G., van der Net, J., Helders, P. J., & Fischer, K. (2010). Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (PedHAL). Haemophilia, 16(2), 281-289.

Timmer, M. A., Gouw, S. C., Feldman, B. M., Zwagemaker, A., de Kleijn, P., Pisters, M. F., Schutgens, R. E. G., Blanchette, V., Srivastava, A., David, J. A., Fischer, K., & van der Net, J. (2018). Measuring activities and participation in persons with haemophilia: A systematic review of commonly used instruments. Haemophilia, 24(2), e33-e49.

Protocol ID:

910801

Variables:
Export Variables
Variable NameVariable IDVariable DescriptionVersiondbGaP Mapping
Hemophilia Inhibitor Research
Measure Name:

Hemophilia-specific Functional Ability

Release Date:

May 7, 2019

Definition

People with hemophilia are faced with numerous functional challenges, including limitations due to bleeding episodes, progressive joint impairments, arthritic pain, and physical disability.

Purpose

This disease-specific, self- or proxy-reported measure can supplement performance-based tests to determine how bleeding episodes and progressive joint impairments resulting from hemophilia impact self-perceived functional abilities.

Keywords

Physical activity, hemophilia, haemophilia, Haemophilia Activities List, HAL, World Federation of Hemophilia, WFH