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Pediatr Rehabil. 2003 Apr-Jun;6(2):77-84.

Development of a disease-specific disability instrument for Pompe disease.

Author information

1
Center for Rehabilitation Effectiveness, Sargent College of Health and Rehabilitation Sciences, Boston University, 635 Commonwealth Avenue, Boston, MA 02215-1605, USA. smhaley@bu.ed

Abstract

PURPOSE:

The purpose of this study was to modify the Paediatric Evaluation of Disability Inventory (PEDI) to create a Pompe disease-specific disability instrument for use in clinical trials and natural history studies.

METHODS:

PEDI item content was revised to include self-care and mobility items appropriate for children and youth with Pompe disease. Data were collected on 30 individuals with Pompe disease (mean age 7.7+/-5.6 years; range 0.4-22.1 years) by parent proxy through telephone interviews. New items were merged with original PEDI items using Rasch rating scale methods.

RESULTS:

The Pompe-PEDI extended the content range and scoring precision of the original PEDI. Construct validity was demonstrated and test-re-test reliability was excellent.

CONCLUSIONS:

The Pompe-PEDI is a reliable and valid instrument to assess and monitor the functional changes of children and youth with Pompe disease.

PMID:
14534044
DOI:
10.1080/1363849031000139298
[Indexed for MEDLINE]
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