Protocol - Hemophilia-specific Functional Ability - Child

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).

Availability

This protocol is freely available; permission not required for use.

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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.

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
caDSR Form	PX910801 Specific Functional Ability Child	14426063	caDSR Form

Derived Variables

None

Process and Review

Not applicable.

Protocol Name from Source

Pediatric Hemophilia Activities List (PedHAL)

Source

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_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_Describe
	PX910801520201	Which of the following does your bike have?	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_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_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_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_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_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_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_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_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_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_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_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_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_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_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

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

Protocol - Hemophilia-specific Functional Ability - Child

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