Original articleA Comparison Between Self-Reported and Observed Activity Limitations in Adults With Neuromuscular Disorders
Section snippets
Participants
This study was approved by the medical ethics committee of the Université catholique de Louvain. The patients were recruited through the Neuromuscular Reference Center of the Cliniques Universitaires Saint-Luc in Brussels. The patients gave written informed consent before the evaluation. Fifty-seven adult patients with a diagnosed NMD were assessed by 4 physical therapists. Patient descriptions are given in table 1.
Self-Reported and Observed Measures
Both self-reported and observed measures were obtained with the ACTIVLIM
Results
No significant DIF, uniform or nonuniform, was found across the 3 evaluations (P≥0.1), indicating that the item hierarchy is invariant if the item difficulty is evaluated by the patients or by the external examiners.
The ICCs between first self-reported measure and observed measure and between first self-reported measure and second self-reported measure were equal to .87 and .93, respectively, indicating good agreement between the measures. Figure 1 shows the relationships between the different
Discussion
The self-perceived difficulty of 57 adult patients with NMDs in performing daily activities was compared with the difficulty in performing the same activities as observed by 4 physical therapists. Both perceived and observed measures were obtained by using the ACTIVLIM questionnaire, allowing the use of the same items and the same scoring procedure for each measure. The high ICC between self-perceived and observed activity limitations (ICC=.87) indicates a good agreement between these measures
Conclusions
The ICC between the 2 measures shows very good agreement between self-reported and observed measures, which indicates that the questionnaire is a valid method for assessing activity limitations in patients with NMDs. Moreover, the patients' perceptions were reproducible after a delay of 45 days, even though they had performed the activities in front of physical therapists.
Acknowledgments
We thank physical therapists Aude Nécandre, Emmanuelle Pernot, and Floriane Collet for their assistance in data acquisition.
The ACTIVLIM questionnaire and its administration instructions can be downloaded from http://www.rehab-scales.org in English, French, and Dutch. The website also allows total raw scores for the ACTIVLIM questionnaire to be converted into a linear measure of activity limitations, according to the Rasch model.
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Supported by the Association Belge contre les Maladies NeuroMusculaires, the Fonds Spéciaux de Recherche of the Université catholique de Louvain, the Association Nationale d'Aide aux Handicapés, and the Fondation Saint-Luc.
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.