14

Appendix
 © Van Genderen et al., 2005, UMC Utrecht

All rights reserved. No part of this document may be reproduced, stored in a

retrieval system, or transmitted in any form or by any means, without the
prior permission of the author.

When using this questionnaire, please use the following references:

Van Genderen FR, Van Meeteren NLU, Van der Bom JG, Heijnen L, De Kleijn P, Van den Berg
HM, Helders PJM. Functional consequences of haemophilia in adults: the development of the
Haemophilia Activities List. Haemophilia 2004; 10: 565-71.

Van Genderen FR, Westers P, Heijnen L, De Kleijn P, Van den Berg HM, Helders PJM, Van
Meeteren NLU. Measuring patients' perceptions on their functional abilities: validation of the
Haemophilia Activities List (HAL). Haemophilia Submitted.
 Haemophilia Activities List

Introduction
This is the Hemophilia Activities List, or HAL. In this questionnaire several activities
are listed that could be difficult for people with hemophilia. The aim of this
questionnaire is to see how easy it is for you to do these activities

General comments
When answering the questions, it is only your own experience that counts. You
should tick the box behind the question that best reflects your own situation.
For every activity, you are asked whether you had any difficulty in performing that
activity due to hemophilia. There are six different response options. Answer each
question by ticking the box that describes your situation.

Example:

In the past month, did you have any difficulty due to hemophilia with:

n/a Impossible Always Mostly Sometimes Rarely Never

Using public transportation (bus,

train, subway)
R8 R1 R2 R3 R4 R5 R6

For every question you are required to tick one box. The “n/a” response option
(“not applicable”) can be used if you never (have to) perform that specific activity.
The “n/a” option is only available for some activities. The difference between the
“Impossible” and “Always” response option, is that with “Always” you are in fact
able to perform that activity, but with problems and with “Impossible” you are
unable to perform that activity. It is very important that you answer all questions.
Even when a question seems irrelevant to you, or when you have no opinion
relating to the question, please tick the box that describes your situation most
closely.

It will take 5-10 minutes to finish this questionnaire.

Van Creveldkliniek / Dep. Rehab. Med.

 Haemophilia Activities List

Lying down/ sitting / kneeling / standing

In the previous month, did you have any difficulty, due to hemophilia, with:

Impossible Always Mostly Sometimes Rarely Never

Sitting down
(e.g. on a chair or couch)
R1 R2 R3 R4 R5 R6

Rising from a chair with armrests R1 R2 R3 R4 R5 R6

Rising from a chair without armrests R1 R2 R3 R4 R5 R6
Kneeling / squatting R1 R2 R3 R4 R5 R6
Bending forward R1 R2 R3 R4 R5 R6
Kneeling for a longer period of time R1 R2 R3 R4 R5 R6
Squatting for a longer period of time R1 R2 R3 R4 R5 R6
Standing for a longer period of time R1 R2 R3 R4 R5 R6

September 2005
 Functions of the legs
In the previous month, did you have any difficulty, due to hemophilia, with:

Impossible Always Mostly Sometimes Rarely Never

Walking short distances

(less than 1 kilometer / 15 minutes)
R1 R2 R3 R4 R5 R6

Walking long distances

(more than 1 kilometer / 15 minutes)
R1 R2 R3 R4 R5 R6

Walking on a soft surface (e.g. on the

beach or through the woods)
R1 R2 R3 R4 R5 R6

Walking on an uneven surface

(e.g. cobblestones, high sidewalks)
R1 R2 R3 R4 R5 R6

Strolling / (window-)shopping R1 R2 R3 R4 R5 R6
Climbing up the stairs R1 R2 R3 R4 R5 R6
Climbing down the stairs R1 R2 R3 R4 R5 R6
Running
(e.g. in order to catch the bus)
R1 R2 R3 R4 R5 R6

Jumping
R1 R2 R3 R4 R5 R6

Van Creveldkliniek / Dep. Rehab. Med.

 Haemophilia Activities List

Functions of the arms

In the previous month, did you have any difficulty, due to hemophilia, with:

Impossible Always Mostly Sometimes Rarely Never

Lifting heavy objects R1 R2 R3 R4 R5 R6

Carrying heavy objects in the arms R1 R2 R3 R4 R5 R6
Fine hand movements
(e.g. closing buttons)
R1 R2 R3 R4 R5 R6

Reaching above your head (to pick

something up from a high shelf)
R1 R2 R3 R4 R5 R6

Use of transportation
In the previous month, did you have any difficulty due to hemophilia with:

n/a Impossible Always Mostly Sometimes Rarely Never

Riding a bicycle R8 R1 R2 R3 R4 R5 R6
Getting in and out of a car R8 R1 R2 R3 R4 R5 R6
Using public transportation
(bus, train, subway)
R8 R1 R2 R3 R4 R5 R6

September 2005
 Self care
In the previous month, did you have any difficulty, due to hemophilia, with:

Impossible Always Mostly Sometimes Rarely Never

Drying your whole body R1 R2 R3 R4 R5 R6

Putting on a shirt, sweater etc. R1 R2 R3 R4 R5 R6
Putting on sock and shoes R1 R2 R3 R4 R5 R6
Putting on a tie or closing the top
button of a shirt
R1 R2 R3 R4 R5 R6

Going to the toilet R1 R2 R3 R4 R5 R6

Household tasks
In the previous month, did you have any difficulty, due to hemophilia, with:

n/a Impossible Always Mostly Sometimes Rarely Never

Going out shopping (for food, drink

etc.)
R8 R1 R2 R3 R4 R5 R6

Washing the dishes, cleaning the sink R8 R1 R2 R3 R4 R5 R6

Cleaning the house R8 R1 R2 R3 R4 R5 R6
Other household tasks (ironing,
making the beds)
R8 R1 R2 R3 R4 R5 R6

Doing odd jobs (both in and around

the house)
R8 R1 R2 R3 R4 R5 R6

Gardening R8 R1 R2 R3 R4 R5 R6

Van Creveldkliniek / Dep. Rehab. Med.

 Haemophilia Activities List

Leisure activities and sports

In the previous month, did you have any difficulty, due to hemophilia, with:

n/a Impossible Always Mostly Sometimes Rarely Never

Playing games (outdoors, e.g. with

your children)
R8 R1 R2 R3 R4 R5 R6

Sports R8 R1 R2 R3 R4 R5 R6
Going out (theatre / museum /
movie theatre / bar)
R8 R1 R2 R3 R4 R5 R6

Hobbies R8 R1 R2 R3 R4 R5 R6
Dancing R8 R1 R2 R3 R4 R5 R6
Going on a holiday (active) R8 R1 R2 R3 R4 R5 R6

Going on a holiday (“passive”; beach-

/hotel holiday)
R8 R1 R2 R3 R4 R5 R6

September 2005
Adaptations and using an aid
To do some activities, you might need some adaptations or an aid. This does
not apply to acute bleeding episodes, when you or more or less forced to
use crutches to be able to walk. In the following questions we ask you some
things regarding those adaptations or aids.

Do you own a car with adaptations?

R No, I don’t have a car
R No, I don’t have adaptations in my car
Yes, I own a car with (multiple responses are allowed):
R Electronic windows
R Power steering
R Automatic gearbox
R The ability to sit in a wheelchair inside your car
R Brake and/or accelerator on the steering column
R Other, namely: ………………………………………………………...
R Other, namely: ………………………………………………………...
R Other, namely: ………………………………………………………...

Do you use aids when performing certain activities?

R No, I don’t use any aids
Yes, I use (multiple responses are allowed):
R A crutch (1 crutch / cane)
R Crutches (two)
R Wheelchair
R Rollator
R Other, namely: ………………………………………………………...
R Other, namely: ………………………………………………………...
R Other, namely: ………………………………………………………...

Van Creveldkliniek / Dep. Rehab. Med.

Haemophilia Activities List

Thank you for completing the questions on activities. To finish this

questionnaire, please provide us with some personal information in the box
below. The information you provide will be handled strictly confidentially.

Today’s date : ....................................................................

Your date of birth : ....................................................................

What type of haemophilia do you have?

Haemophilia type* R 1 Haemophilia A

R 2 Haemophilia B

Severity* R 1 Mild
R 2 Moderate
R 3 Severe

* Please tick the appropriate box

Thank you very much for your cooperation

September 2005
Scoring system
Scores can be calculated for each of the seven domains of the HAL. Additionally,
three component scores can be calculated (Activities involving the Upper Extremities,
Basic activities involving the Lower Extremities and Complex activities involving the
Lower Extremities) as well as an overall score. Before summarizing the individual
item scores, recoding is required (see Table 1); a higher raw score represents more
functional limitations; possible scoring ranges are given (Table 2).
Normalized scores for the domains, components, and the full questionnaire can also
be obtained. Missing values are controlled for and the possible scores range from 0
to 100, where 0 represents the worst possible functional status and 100 the best
possible functional status (Table 3).
Tabel 1: Recoding
Score Recode Meaning
8 0 N/A
1 6 Impossible
2 5 Always problems
3 4 Mostly problems
4 3 Sometimes problems
5 2 Rarely problems
6 1 Never problems

Table 2: Scores
Score Items Score range
Lying / sitting / kneeling / standing LSKS 1-8 (8) 8 - 48
Functions of the legs LEGS 9-17 (9) 9 - 54
Functions of the arms ARMS 18-21 (4) 4 - 24
Use of transportation TRANS 22-24 (3) 3 - 18
Self care SELFC 25-29 (5) 5 - 30
Household tasks HOUSEH 30-35 (6) 6 - 36
Leisure activities and sports LEISPO 36-42 (7) 7 - 42
Upper Extremity Activities UPPER * (9) 9 - 54
Basic Lower Extremity Activities LOWBAS ** (6) 6 -36
Complex Lower Extremity Activities LOWCOM *** (9) 9 - 54
Sum score SUM 1-42 (42) 42 - 252
* Items for UPPER-component: 18, 19, 20, 21, 25, 26, 27, 28, 29. (9 items)
** Items for LOWBAS-component: 8, 9, 10, 11, 12, 13. (6 items)
*** Items for LOWCOM-component: 3, 4, 6, 7, 14, 15, 16, 17, 22. (9 items)

Table 3: Normalization
Score Normalisatie
LSKS 100 - ((Σ1−8 - valid) * (100/(5 * valid)))
LEGS 100 - ((Σ9−17 - valid) * (100/(5 * valid)))
ARMS 100 - ((Σ18−21 - valid) * (100/(5 * valid)))
TRANS 100 - ((Σ22−24 - valid) * (100/(5 * valid)))
SELFC 100 - ((Σ25−29 - valid) * (100/(5 * valid)))
HOUSEH 100 - ((Σ30−35 - valid) * (100/(5 * valid)))
LEISPO 100 - ((Σ36−42 - valid) * (100/(5 * valid)))
UPPER 100 - ((Σ18−21;25−29 - valid) * (100/(5 * valid)))
LOWBAS 100 - ((Σ8−13 - valid) * (100/(5 * valid)))
LOWCOM 100 - ((Σ3−7;14−17;22 - valid) * (100/(5 * valid)))
SUM 100 - ((Σ1−42 - valid) * (100/(5 * valid)))
“valid” = number of items scored within the specific domain/component.
Items with “n/a”-response are to be considered NOT valid

Van Creveldkliniek / Dep. Rehab. Med.

Haemophilia Activities List

Example:
A patient completed the domain of Leg Functions as follows:

Impossible Always Mostly Sometimes Rarely Never

Walking short distances

(less than 1 kilometer / 15 minutes)
R1 R2 R3 : 4 R5 R6
Walking long distances
(more than 1 kilometer / 15 minutes)
R1 R2 :3 R4 R5 R6
Walking on a soft surface (e.g. on the
beach or through the woods)
R1 R2 R3 R4 : 5 R6
Walking on an uneven surface
(e.g. cobblestones, high sidewalks)
R1 R2 R3 : 4 R5 R6
Strolling / (window-)shopping R1 R2 R3 : 4 R5 R6
Climbing up the stairs R1 R2 R3 R4 R5 R6
Climbing down the stairs R1 R2 R3 : 4 R5 R6
Running
(e.g. in order to catch the bus) : 1 R2 R3 R4 R5 R6
Jumping
: 1 R2 R3 R4 R5 R6

Item Score Recode Based on the recoded scores, the raw domain
Item 9 4 3 score for the LEGS domain is 30 points.
Item 10 3 4
Item 11 5 2 The LOWBAS component encompasses the items
Item 12 4 3
8-13. Item 8 scored 6 points (i.e. “Impossible”),
Item 13 4 3
Item 14 Invalid Invalid which results in a raw component score of
Item 15 4 3 6+3+4+2+3+3 = 21 points.
Item 16 1 6
Item 17 1 6 To normalize the scores (both domain and
component scores), the formulas presented in
Table 3 are used. This results in the following:

LEGS Normalized: Within the domain, 1 item is invalid, resulting in 8 valid responses
out of a possible 9. This results in the following formula:

100-((Σ9−17-valid)*(100/(5*valid))) = 100-((30-8)*(100/(5*8))) = 100-55 = 45 points

LOWBAS Normalized: Within the component, no items are invalid, resulting in 6 valid
responses out of a possible 6. This results in the following formula:

100-((Σ8−13-valid)*(100/(5*valid))) = 100-((21-6)*(100/(5*6))) = 100 - 50 = 50 points

September 2005
Notes
Notes
Notes