Protocol - Hemophilia-specific Functional Ability - Adult
- Activities of Daily Living (ADLs)
- Disability Index
- Physical Activity Self-Efficacy - Adolescent
- Physical Activity Self-Efficacy - Adult
- Physical Functioning - Objective
- Physical, Social, and Mental Health Functioning (SF-36V2)
Description
The Haemophilia Activities List (HAL) is a disease-specific, self-administered questionnaire that includes 42 multiple choice items across seven domains: lying/sitting/kneeling/standing (8 items), functions of the legs (9 items), functions of the arms (4 items), use of transportation (3 items), self-care (5 items), household tasks (6 items), and leisure activities and sports (7 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.
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).
Availability
This protocol is freely available; permission not required for use.
Protocol
Summary of the Haemophilia Activities List (HAL)
The Haemophilia Activities List (HAL) is a self-administered questionnaire that includes 42 multiple-choice items across seven domains: lying/sitting/kneeling/standing (8 items), functions of the legs (9 items), functions of the arms (4 items), use of transportation (3 items), self-care (5 items), household tasks (6 items), and leisure activities and sports (7 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. 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. The scoring manual is available with the questionnaire.
Personnel and Training Required
None
Equipment Needs
NoneRequirements
| Requirement Category | Required |
|---|---|
| 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-administered questionnaire
Lifestage
Adult
Participants
Adults, ages 18 years and older
Selection Rationale
The Haemophilia Activities List (HAL) is a well-established, self-administered protocol that is easy to administer, score, and interpret.
Language
English
Standards
| Standard | Name | ID | Source |
|---|---|---|---|
| caDSR Form | PX910802 Specific Functional Ability Adult | 14351670 | caDSR Form |
Derived Variables
None
Process and Review
Not applicable.
Protocol Name from Source
Hemophilia Activities List (HAL)
Source
van Genderen, F. R., van Meeteren, N. L., van der Bom, J. G., Heijnen, L., De, K. P., van den Berg, H. M., Westers, P., Helders, P. J., et al. (2005). Human Activities List (HAL). Utrecht, the Netherlands: Van Creveldkliniek, University Medical Centre.
The 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
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.
van Genderen, F. R., van Meeteren, N. L., van der Bom, J. G., Heijnen, L., De K. P., van den Berg, H. M., & Helder, P. J. (2004). Functional consequences of haemophilia in adults: The development of the Haemophilia Activities List. Haemophilia, 10(5), 565-571.
van Genderen, F. R., Westers, P., Heijnen, L., De, K. P., van den Berg, H. M., Helders, P. J., & van Meeteren, N. L. (2006). Measuring patients perceptions on their functional abilities: Validation of the Haemophilia Activities List. Haemophilia, 12(1), 36-46.
Protocol ID
910802
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Aids_Activities_Describe | ||||
| PX910802430201 | Which of the following aids do you use? | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Bending_Forward | ||||
| PX910802040000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Carrying_Heavy_Objects_Arms | ||||
| PX910802180000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Car_Adaptations | ||||
| PX910802420100 | Do you own a car with adaptations? | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Car_Adaptations_Describe_Other | ||||
| PX910802420202 | Which of the following does your car have? Other | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Climbing_Down_Stairs | ||||
| PX910802140000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Date | ||||
| PX910802440000 | What is today's date? | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Drying_Body | ||||
| PX910802240000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Entering_Leaving_Car | ||||
| PX910802220000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Gardening | ||||
| PX910802340000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Hobbies | ||||
| PX910802380000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Holiday | ||||
| PX910802400000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Household_Tasks | ||||
| PX910802320000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Jumping | ||||
| PX910802160000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Reaching_Above_Head | ||||
| PX910802200000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Sock_Shoes | ||||
| PX910802260000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Sports | ||||
| PX910802360000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Squatting_Long_Period | ||||
| PX910802060000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Strolling | ||||
| PX910802120000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Toilet | ||||
| PX910802280000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Type | ||||
| PX910802460100 | What type of haemophilia do you have? | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Walking_Short_Distance | ||||
| PX910802080000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Walking_Soft_Surface | ||||
| PX910802100000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Washing_Dishes | ||||
| PX910802300000 | In the previous month, did you have any more | N/A | ||
| PX910802_Hemophilia_Specific_Functional_Ability_Adult_Without_Armrests | ||||
| PX910802020000 | In the previous month, did you have any more | N/A | ||
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
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 910801 | Hemophilia-specific Functional Ability - Child |
| 910802 | Hemophilia-specific Functional Ability - Adult |