Protocol - Hemophilia-specific Functional Ability - Child

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- or proxy-administered questionnaire

Lifestage

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

English, Other languages available at source

Standards

Standard	Name	ID	Source

Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Pediatric Hemophilia Activities List (PedHAL)

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 Name	Variable ID	Variable Description	dbGaP Mapping
PX910801_Hemophilia_Specific_Functional_Ability_Child_Aids_Activities
	PX910801530100	Do you use aids when performing certain more activities? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Aids_Activities_Describe
	PX910801530201	Which of the following aids do you use?	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Aids_Activities_Describe_Others
	PX910801530202	Which of the following aids do you use? Other	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Bending_Forward
	PX910801070000	In the previous month, did you have any more difficulty, due to hemophilia, with bending over forwards? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Bike_Adaptations
	PX910801520100	Do you have a bike that has been modified?	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Bike_Adaptations_Describe
	PX910801520201	Which of the following does your bike have?	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Bike_Adaptations_Describe_Other
	PX910801520202	Which of the following does your bike have? Other	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Brushing_Teeth
	PX910801370000	In the previous month, did you have any more difficulty, due to hemophilia, with brushing your teeth? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Buttering_Bread
	PX910801350000	In the previous month, did you have any more difficulty, due to hemophilia, with buttering bread or making a sandwich? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Carrying_Heavy_Objects_Two_Hands
	PX910801210000	In the previous month, did you have any more difficulty, due to hemophilia, with carrying heavy objects with two hands (e.g., a big box of toys, a pile of books)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Chores_Indoors
	PX910801380000	In the previous month, did you have any more difficulty, due to hemophilia, with chores in the house (e.g., making your bed, cleaning your room, setting the table)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Chores_Others
	PX910801400000	In the previous month, did you have any more difficulty, due to hemophilia, with other household chores (running errands, walking the dog)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Chores_Outdoors
	PX910801390000	In the previous month, did you have any more difficulty, due to hemophilia, with outside chores (e.g., putting the rubbish out, washing the car)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Contact_Individual
	PX910801490000	In the previous month, did you have any more difficulty, due to hemophilia, with individual contact sports (e.g., judo, karate, boxing, kickboxing)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Contact_Non_Individual
	PX910801480000	In the previous month, did you have any more difficulty, due to hemophilia, with individual non-contact sports (e.g., tennis, cycling)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Contact_Non_Team
	PX910801460000	In the previous month, did you have any more difficulty, due to hemophilia, with playing non-contact team sports (e.g., volleyball, basketball)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Contact_Team
	PX910801470000	In the previous month, did you have any more difficulty, due to hemophilia, with playing contact team sports (e.g., water polo, soccer)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Dancing
	PX910801410000	In the previous month, did you have any more difficulty, due to hemophilia, with going out and dancing (theater, museum, cinema, pub, disco)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Drying_Body
	PX910801300000	In the previous month, did you have any more difficulty, due to hemophilia, with drying your whole body? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Entering_Leaving_Car
	PX910801280000	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
PX910801_Hemophilia_Specific_Functional_Ability_Child_Fastening_Button
	PX910801340000	In the previous month, did you have any more difficulty, due to hemophilia, with fastening a hood or doing up the top button on your jacket? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Fine_Hand_Movements
	PX910801230000	In the previous month, did you have any more difficulty, due to hemophilia, with fine hand movements (e.g., picking up Lego, playing computer games)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Jumping
	PX910801170000	In the previous month, did you have any more difficulty, due to hemophilia, with jumping? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Kneeling
	PX910801050000	In the previous month, did you have any more difficulty, due to hemophilia, with kneeling/squatting (bending your knees)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Leaning_Arms
	PX910801250000	In the previous month, did you have any more difficulty, due to hemophilia, with leaning on your arms? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Playing_Outdoors
	PX910801420000	In the previous month, did you have any more difficulty, due to hemophilia, with playing outside, alone or with others? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Public_Transportation
	PX910801290000	In the previous month, did you have any more difficulty, due to hemophilia, with using public transportation (bus, train, metro, tram)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Reaching_Above_Head
	PX910801220000	In the previous month, did you have any more difficulty, due to hemophilia, with stretching to reach something above your head (such as a high shelf)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Riding_Bicycle
	PX910801270000	In the previous month, did you have any more difficulty, due to hemophilia, with cycling? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Running
	PX910801160000	In the previous month, did you have any more difficulty, due to hemophilia, with running (e.g., to catch the bus, or catch up to a friend)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_School_Camp
	PX910801510000	In the previous month, did you have any more difficulty, due to hemophilia, with going to school camp or summer camp? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_School_Sports_Athletics
	PX910801440000	In the previous month, did you have any more difficulty, due to hemophilia, with school sports: athletics (e.g., long jump)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_School_Sports_Ball_Sports
	PX910801450000	In the previous month, did you have any more difficulty, due to hemophilia, with school sports: ball sports (volleyball, softball)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_School_Sports_Exercises
	PX910801430000	In the previous month, did you have any more difficulty, due to hemophilia, with school sports: exercises and gymnastic equipment? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Shaking_Hands
	PX910801260000	In the previous month, did you have any more difficulty, due to hemophilia, with shaking hands with someone? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Shirt_Sweater
	PX910801310000	In the previous month, did you have any more difficulty, due to hemophilia, with putting on a t-shirt, jumper or sweater, etc.? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Sitting_Down
	PX910801010000	In the previous month, did you have any more difficulty, due to hemophilia, with sitting down (e.g. on a chair or couch) show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Sitting_Ground
	PX910801020000	In the previous month, did you have any more difficulty, due to hemophilia, with sitting on the ground (e.g. when watching television or playing) show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Sock_Shoes
	PX910801320000	In the previous month, did you have any more difficulty, due to hemophilia, with putting on sock and shoes? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Sports_Event
	PX910801500000	In the previous month, did you have any more difficulty, due to hemophilia, with taking part in a sports event over the course of several days (e.g., swimming, walking, cycling, or a sports tournament)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Squatting_Long_Period
	PX910801060000	In the previous month, did you have any more difficulty, due to hemophilia, with squatting for a long periods (knees not touching the ground)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Standing_Extended_Period
	PX910801100000	In the previous month, did you have any more difficulty, due to hemophilia, with standing still for very long periods (more than 1 hour)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Standing_Long_Period
	PX910801090000	In the previous month, did you have any more difficulty, due to hemophilia, with standing still for longer periods (from 10 minutes to 1 hour)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Standing_Short_Period
	PX910801080000	In the previous month, did you have any more difficulty, due to hemophilia, with standing still for a short period (less than 10 minutes; e.g., waiting in a queue in a shop)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Strolling
	PX910801150000	In the previous month, did you have any more difficulty, due to hemophilia, with strolling (e.g., a day at the zoo)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Unscrewing_Lid
	PX910801360000	In the previous month, did you have any more difficulty, due to hemophilia, with unscrewing the lid from a bottle of water, juice, etc? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Down_Stairs
	PX910801190000	In the previous month, did you have any more difficulty, due to hemophilia, with walking down the stairs (a whole stairway is around 14 steps)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Long_Distance
	PX910801120000	In the previous month, did you have any more difficulty, due to hemophilia, with walking long distances (10 min to 1 hour)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Riding_Small_Hill_Slope
	PX910801200000	In the previous month, did you have any more difficulty, due to hemophilia, with walking or riding up a small hill or slope without help? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Short_Distance
	PX910801110000	In the previous month, did you have any more difficulty, due to hemophilia, with walking short distances (<10 min)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Soft_Surface
	PX910801130000	In the previous month, did you have any more difficulty, due to hemophilia, with walking on a soft surface (e.g., on the beach)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Uneven_Surface
	PX910801140000	In the previous month, did you have any more difficulty, due to hemophilia, with walking on an uneven surface (e.g., a bumpy road, high curbs, doorsteps)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Walking_Up_Stairs
	PX910801180000	In the previous month, did you have any more difficulty, due to hemophilia, with walking up the stairs (a whole stairway is around 14 steps)? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Wiping_Bottom
	PX910801330000	In the previous month, did you have any more difficulty, due to hemophilia, with wiping your bottom after using the toilet? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Without_Armrests
	PX910801040000	In the previous month, did you have any more difficulty, due to hemophilia, with rising from a chair without armrests? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_With_Armrests
	PX910801030000	In the previous month, did you have any more difficulty, due to hemophilia, with rising from a char with armrests? show less	N/A
PX910801_Hemophilia_Specific_Functional_Ability_Child_Writing
	PX910801240000	In the previous month, did you have any more difficulty, due to hemophilia, with writing (such as schoolwork or homework)? 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.