Haemophilia Activities List (HAL)

Description

The HAL measures the impact of hemophilia on self-perceived functional abilities in adults.

It contains 42 multiple choice questions in seven domains:

1. Lying/sitting/kneeling/standing (8 items)
2. Functions of the legs (9 items)
3. Functions of the arms (4 items)
4. Use of transportation (3 items)
5. Self-care (5 items)
6. Household tasks (6 items)
7. Leisure activities and sports (7 items)

Contact person:
Kathelijn Fischer, at the secretariat of the Van Creveldkliniek, University Medical Centre Utrecht: [email protected]

Date of this review: February 18, 2011

Utility

Overall utility:
The HAL measures functional outcome from the patient’s perspective. The Functional Independence Score in Hemophilia (FISH) could be used as a complementary performance-based observational tool.

Limitations:
The HAL has not been tested for reliability and sensitivity to change. Therefore, clinicians should take care with interpretation of results when used on different occasions. Its potential to detect clinically important changes as a result of therapeutic interventions is not yet known.

Administration

1. Time to complete: Approximately 5-10 minutes (for a native speaker). Scoring will take approximately 5 minutes.
2. Equipment/space required: None. Only the questionnaire and a pen are needed.
3. Training required: None. The instructions provided are self-explanatory.
4. Cost: None
5. Scoring/scaling and interpretation of results: The most important outcomes are the overall sum score and three component scores relating to upper extremity activities, basic lower extremity activities, and complex lower extremity activities. A domain score for each of the seven domains can also be calculated.

The scoring manual, available with the questionnaire, is self-explanatory and shows calculations, normalizations, and adjustment for missing values.

Psychometrics

Psychometric properties:

1. Construct validity: When compared to the Dutch Arthritis Impact Measurement Scale 2 (AIMS) and the Impact on Participation and Autonomy questionnaire (IPA), the convergent validity was good (r=0.47–0.84). The construct validity of the HAL when compared to the four performance tests was generally lower (r=0.23–0.77). The above findings indicate that the HAL measures a similar construct as the AIMS and IPA questionnaires and, to a lesser extent, the functional tests.
2. Criterion validity has not been assessed. There is no gold standard to compare to the HAL.
3. Reliability: The internal consistency for the seven domains of the HAL was good (α=0.61–0.96). The internal consistency of the three components was also good (Cronbach’s alpha=0.93–0.95). Good internal consistency means that the items within the subscales measure similar functions.Test-retest reliability has not been assessed; comparison of scores obtained on different occasions should be made with care, until further data becomes available on test-retest reliability.
4. Responsiveness/sensitivity: The ability of the HAL to detect clinically important changes over time (e.g. before and after treatment) has yet to be established.

Languages studied:

The HAL was developed in Dutch. It is also available in English, German, Swedish, as well as Bengali, Hindi, Kannada, Tamil, and Telegu. However, cross-cultural validation has not yet been established.

Groups tested with this measure:

Adults with hemophilia: two study groups, n=50 (van Genderen et al, 2004) and n=127 (van Genderen et al, 2006). For the validity study of 2006, participants had severe hemophilia A or B and a median age of 42 years (range 18-70 years).

Glossary of Psychometric Properties

References

1. Brodin E, Baghaei F, Elfvinger P, Lindvall K, Sunnerhagen KS. The Swedish version of the Haemophilia Activity List. Haemophilia 2011 Feb 7. doi: 10.1111/j.1365-2516.2010.02474.x [Epub ahead of print].
2. van Genderen FR, van Meeteren NL, van der Bom JG, Heijnen L, De KP, van den Berg HM, et al. Functional consequences of haemophilia in adults: the development of the Haemophilia Activities List. Haemophilia 2004 Sep;10(5):565-71.
3. van Genderen FR, Westers P, Heijnen L, De KP, van den Berg HM, Helders PJ, et al. Measuring patients' perceptions on their functional abilities: validation of the Haemophilia Activities List.Haemophilia 2006 Jan; 12(1):36-46.