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Protocol - Hemophilia-specific Functional Ability - Adult

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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).

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.

Protocol Name from Source:

Haemophilia Activities List

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-administered questionnaire

Life Stage:

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
StandardNameIDSource
Common Data Elements (CDE) Adult Hemophilia Activity List Assessment Score 6706624 CDE Browser
Derived Variables

None

Process and Review

Not applicable.

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 IDVariable DescriptiondbGaP Mapping
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Aids_Activities
PX910802430100 Do you use aids when performing certain more
activities? show less
N/A
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_Aids_Activities_Describe_Others
PX910802430202 Which of the following aids do you use? Other N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Bending_Forward
PX910802040000 In the previous month, did you have any more
difficulty, due to hemophilia, with bending forward? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Birthdate
PX910802450000 What is your date of birth? N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Carrying_Heavy_Objects_Arms
PX910802180000 In the previous month, did you have any more
difficulty, due to hemophilia, with carrying heavy objects in the arms? show less
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
PX910802420201 Which of the following does your car have? 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_Cleaning_House
PX910802310000 In the previous month, did you have any more
difficulty, due to hemophilia, with cleaning the house? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Climbing_Down_Stairs
PX910802140000 In the previous month, did you have any more
difficulty, due to hemophilia, with climbing down the stairs? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Climbing_Up_Stairs
PX910802130000 In the previous month, did you have any more
difficulty, due to hemophilia, with climbing up the stairs? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Dancing
PX910802390000 In the previous month, did you have any more
difficulty, due to hemophilia, with dancing? show less
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
difficulty, due to hemophilia, with drying your whole body? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Entering_Leaving_Car
PX910802220000 In the previous month, did you have any more
difficulty, due to hemophilia, with getting in and out of a car? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Fine_Hand_Movements
PX910802190000 In the previous month, did you have any more
difficulty, due to hemophilia, with fine hand movements (e.g., closing buttons)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Gardening
PX910802340000 In the previous month, did you have any more
difficulty, due to hemophilia, with gardening? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Going_Out
PX910802370000 In the previous month, did you have any more
difficulty, due to hemophilia, with going out (theater/museum/movie theater/bar)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Hobbies
PX910802380000 In the previous month, did you have any more
difficulty, due to hemophilia, with hobbies? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Holiday
PX910802400000 In the previous month, did you have any more
difficulty, due to hemophilia, with going on a holiday (active)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Holiday_Passive
PX910802410000 In the previous month, did you have any more
difficulty, due to hemophilia, with going on a holiday ("passive", beach/hotel holiday)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Household_Tasks
PX910802320000 In the previous month, did you have any more
difficulty, due to hemophilia, with other household tasks (ironing, making the beds)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Jumping
PX910802160000 In the previous month, did you have any more
difficulty, due to hemophilia, with jumping? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Kneeling
PX910802030000 In the previous month, did you have any more
difficulty, due to hemophilia, with kneeling/squatting? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Kneeling_Long_Period
PX910802050000 In the previous month, did you have any more
difficulty, due to hemophilia, with kneeling for a longer period of time? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Lifting_Heavy_Objects
PX910802170000 In the previous month, did you have any more
difficulty, due to hemophilia, with lifting heavy objects? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Odd_Jobs
PX910802330000 In the previous month, did you have any more
difficulty, due to hemophilia, with doing odd jobs (both in and around the house)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Playing_Games
PX910802350000 In the previous month, did you have any more
difficulty, due to hemophilia, with playing games (outdoors, e.g. with your children)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Public_Transportation
PX910802230000 In the previous month, did you have any more
difficulty, due to hemophilia, with using public transportation (bus, train, subway)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Reaching_Above_Head
PX910802200000 In the previous month, did you have any more
difficulty, due to hemophilia, with reaching above your head (to pick something up from a high shelf)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Riding_Bicycle
PX910802210000 In the previous month, did you have any more
difficulty, due to hemophilia, with riding a bicycle? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Running
PX910802150000 In the previous month, did you have any more
difficulty, due to hemophilia, with running (e.g., in order to catch the bus)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Severity
PX910802460200 What is the severity of your condition? N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Shirt_Sweater
PX910802250000 In the previous month, did you have any more
difficulty, due to hemophilia, with putting on a shirt, sweater, etc.? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Shopping
PX910802290000 In the previous month, did you have any more
difficulty, due to hemophilia, with going out shopping (for food, drink, etc.)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Sock_Shoes
PX910802260000 In the previous month, did you have any more
difficulty, due to hemophilia, with putting on sock and shoes? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Sports
PX910802360000 In the previous month, did you have any more
difficulty, due to hemophilia, with sports? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Squatting_Long_Period
PX910802060000 In the previous month, did you have any more
difficulty, due to hemophilia, with squatting for a longer period of time? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Standing_Long Period
PX910802070000 In the previous month, did you have any more
difficulty, due to hemophilia, with standing for a longer period of time? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Strolling
PX910802120000 In the previous month, did you have any more
difficulty, due to hemophilia, with strolling / (window-)shopping? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Tie_Shirt
PX910802270000 In the previous month, did you have any more
difficulty, due to hemophilia, with putting on a tie or closing the top button of a shirt? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Toilet
PX910802280000 In the previous month, did you have any more
difficulty, due to hemophilia, with going to the toilet? show less
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_Long_Distance
PX910802090000 In the previous month, did you have any more
difficulty, due to hemophilia, with walking long distances (>1 km / 15 min)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Walking_Short_Distance
PX910802080000 In the previous month, did you have any more
difficulty, due to hemophilia, with walking short distances (<1 km / 15 min)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Walking_Soft_Surface
PX910802100000 In the previous month, did you have any more
difficulty, due to hemophilia, with walking on a soft surface (e.g., on the beach or through the woods? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Walking_Uneven_Surface
PX910802110000 In the previous month, did you have any more
difficulty, due to hemophilia, with walking on an uneven surface (e.g., cobblestones, high sidewalks)? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Washing_Dishes
PX910802300000 In the previous month, did you have any more
difficulty, due to hemophilia, with washing the dishes, cleaning the sink? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_Without_Armrests
PX910802020000 In the previous month, did you have any more
difficulty, due to hemophilia, with rising from a chair without armrests? show less
N/A
PX910802_Hemophilia_Specific_Functional_Ability_Adult_With_Armrests
PX910802010000 In the previous month, did you have any more
difficulty, due to hemophilia, with rising from a char with armrests? show less
N/A
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