Lista de actividades para pacientes con hemofilia – Pediátrica (PedHAL)

Description

The PedHAL should be selected to measure the impact of hemophilia on self-perceived functional abilities in children.

The current version (0.11) consists of 53 items in seven domains:

1. Sitting/kneeling/standing (10 items)
2. Functions of the legs (11 items)
3. Functions of the arms (6 items)
4. Use of transportation (3 items)
5. Self care (9 items)
6. Household tasks (3 items)
7. Leisure activities and sports (11 items)

A parent/proxy (age 4-8) and child version (8-18) was constructed with some minor linguistic differences (see questionnaires, above).

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

Date of this review: February 21, 2011

Utility

Overall utility:
To be determined with further study.

Limitations:
The pedHAL 0.11 is primarily an outcome instrument under study. Psychometric properties have not yet been fully evaluated in the full spectrum of levels of disability.

Administration

1. Time to complete: 10-20 minutes for both the child and parent versions.
2. Equipment/space required: None. Only the questionnaire and are pen are needed.
3. Training required: None. The instructions provided are self-explanatory.
4. Cost: None
5. Scoring/scaling/interpretation of results: Normalized scoring per domain and sum score, analogous to that of the Haemophilia Activities List (HAL). A detailed scoring system will become available in the pedHAL version 1.0.

Psychometrics

Psychometric properties:

1. Construct validity (preliminary data of pilot test):
   • Convergent validity: Most subscales showed moderate associations with joint examination (r=0.42–0.63) and moderate to good associations with the physical function subscale of the Child Health Questionnaire (CHQ-50) (r=0.48–0.78).
   • Divergent/discriminant validity: Preliminary analysis shows the pedHAL does measure functional abilities. No significant associations were found between the pedHAL and the subscales mental health and behaviour, except for the subscales leisure and sport and mental health (r=0.47).
2. Criterion validity has not been assessed.There is no gold standard to compare to the pedHAL.
3. Reliability (preliminary data of pilot test):
   • Reproducibility, as assessed by a Wilcoxon signed rank order test, showed no differences on the level of subscales and sum score of the PedHAL on test and retest for both parent and child forms.
   • The limits of agreement (LOA) were low on most subscales for the parent (LOA 0.2±0.9) and child (LOA 0.2±0.9) forms.
   • The implication for the current user is that the pedHAL should be interpreted very cautiously until further psychometric information becomes available.
4. Responsiveness/sensitivity has not been evaluated. The pedHAL should be interpreted very cautiously until further psychometric information becomes available.

Languages studied:

The pedHAL has been developed in Dutch. Canadian English, Canadian French, and Romanian are currently being studied. Cross-cultural validity of the pedHAL has yet to be established. Until then, results should be interpreted with care.

Groups tested with this measure:

32 Dutch boys with severe and mild hemophilia A or B, between 4-18 yrs of age. Severe patients were on prophylactic treatment and mild patients were treated on-demand.

Glossary of Psychometric Properties

References

1. Groen WG, van der Net J, Helders PJ, Fischer K. Development and preliminary testing of a Paediatric Version of the Haemophilia Activities List (pedhal). Haemophilia 2010 Mar; 16(2):281-9.