Protocol - Hemophilia-specific Functional Ability - Adult

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

Available

Download PDF

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

None

Requirements

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

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
	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

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

Publications

There are no publications listed for this protocol.

Protocol - Hemophilia-specific Functional Ability - Adult

Related Protocols:

Essential Protocols:

Description

Specific Instructions

Availability

Protocol

Personnel and Training Required

Equipment Needs

Requirements

Mode of Administration

Lifestage

Participants

Selection Rationale

Language

Standards

Derived Variables

Process and Review

Protocol Name from Source

Source

General References

Protocol ID

Variables

Measure Name

Release Date

Definition

Purpose

Keywords

Measure Protocols

Publications