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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

Not applicable.

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 IDVariable DescriptiondbGaP 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 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