Development and Validation of a Neurological Disability Scale for Patients with HTLV-1 Associated Myelopathy/Tropical Spastic Paraparesis (HAM/TSP): The IPEC-1 Scale (P03.258)

Abstract

Objective: To create and validate a neurological disability scale (NDS) for patients with Human T-cell Lymphotropic Virus Type 1 (HTLV-1) associated myelopathy / tropical spastic paraparesis (HAM/TSP). Background HAM/TSP is a chronic disorder which is an important cause of disability among relatively young persons. It is characterized by a progressive spastic paraparesis, neurogenic bladder, pain, and minor sensory signs. Many aspects about the disease progression, disability profile and response to therapeutic approaches are yet to be defined. The current scales used to measure neurological disability (ND) in HAM/TSP are incomplete, measuring only motor disability as the Osame9s scale or the Disability Status Score (DSS), or are of difficult application and not created for this specific disease, as the Expanded Disability Status Score (EDSS), that was created for patients with Multiple Sclerosis. Design/Methods: The IPEC-1 scale was created based on a extensive literature review about the clinical aspects of the disease and our clinical experience acquired by evaluation of a large cohort of patients with HAM/TSP (about 1000 patients) in our out-patient clnic in Fiocruz, Rio de Janeiro, Brazil. It is a multidimentional scale that assesses more than one aspect of the disease. Fifty-nine HAM/TSP patients were submitted to the IPEC scale, DSS, Osame9s scale. Its internal consistency, inter-rater agreement and face and content validity were evaluated. Results: The score distribution shows good variability, and no floor or ceiling effects were detected. The internal consistency of the IPEC scale varied from 0.43 to 0.92, and the inter-rater agreement was 96%. The scale showed good face and content validity, and the instrument was able to distinguish significantly groups of patients with distinct deambulation independence levels. The administrative and respondent burdens were very low. Conclusions: The IPEC-1 scale provides a useful and objective tool to assess the ND in this group of individuals. Disclosure: Dr. Schmidt has nothing to disclose. Dr. Oliveira has nothing to disclose. Dr. Araujo has nothing to disclose.