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Validation of the XDP–MDSP rating scale for the evaluation of patients with X-linked dystonia-parkinsonism

Pasco, Paul Matthew D ; Jamora, Roland Dominic G ; Rosales, Raymond L ; Diesta, Cid Czarina E ; Ng, Arlene R ; Teleg, Rosalia A ; Go, Criscely L ; Lee, Lillian ; Fernandez, Hubert H

NPJ Parkinson's Disease, 2017, Vol.3 [Peer Reviewed Journal]

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  • Title:
    Validation of the XDP–MDSP rating scale for the evaluation of patients with X-linked dystonia-parkinsonism
  • Author/Creator: Pasco, Paul Matthew D ; Jamora, Roland Dominic G ; Rosales, Raymond L ; Diesta, Cid Czarina E ; Ng, Arlene R ; Teleg, Rosalia A ; Go, Criscely L ; Lee, Lillian ; Fernandez, Hubert H
  • Subjects: Article
  • Is Part Of: NPJ Parkinson's Disease, 2017, Vol.3
  • Description: X-linked dystonia-parkinsonism(XDP) is a neurodegenerative disorder endemic to the Philippines. A rating scale was developed by the authors under the guidance of the Movement Disorder Society of the Philippines (MDSP) to assess XDP severity and progression, functional impact, and response to treatment in future clinical trials. Our main objective was to validate our new scale, the XDP–MDSP scale. The initial validation process included pragmatic testing to XDP patients followed by a modified Delphi procedure with an international advisory panel of dystonia, parkinsonism and scale development experts. Pearson correlation was used to assess construct validity of our new scale versus the assess construct validity of our new scale versus standard dystonia, parkinsonism, non-motor and functional scales; and also to assess divergent validity against behavioral and cognitive scales. The 37-item XDP–MDSP scale has five parts: I-dystonia, II-parkinsonism, III-non-motor features, IV-ADL, and V-global impression. After initial validation, the scale was administered to 204 XDP patients. Inter-domain correlation for the first four parts was acceptable. The correlation between these domains and the global rating was slightly lower. Correlations between Parts I, II, III, and IV versus standard dystonia, parkinsonism, non-motor and functional scales were acceptable with values ranging from 0.323 to 0.428. For divergent validity, a significant correlation was seen with behavioral scales. No significant correlation was noted with the cognitive scale. The proposed XDP–MDSP scale is internally valid but the global rating subscale may need to be modified or eliminated. While there is convergent validity, divergent validation was successful only on cognitive and not behavioral scales. The frequent co-occurrence of anxiety and depression, and its effect on the motor and functional state, may explain this finding. Disease rating scale: Adressing a Philippine problem Researchers validate a tool to assess patients with X-linked dystonia parkinsonism (XDP), a movement disorder that affects men of Filipino descent. Roland Dominic Jamora and Paul Matthew Pasco, at the University of the Philippines Manila, and colleagues collaborated with the Movement Disorder Society of the Philippines (MDSP) to develop a new comprehensive rating scale that is specific for this condition. The 37-item test was administered to over 200 patients and the results correlated with those obtained in commonly used scales for the assesment of dystonia, parkinsonism, motor and non-motor symptoms. The authors conclude that the XDP-MDSP rating scale will allow clinicians and researchers to evaluate the severity of XDP as well as determine patients’ response to treatment. Further refining the scale may be required to discern the effect of patients’ anxiety and depression on their functional state.
  • Identifier: E-ISSN: 2373-8057 ; DOI: 10.1038/s41531-017-0026-0 ; PMCID: 5526880 ; PMID: 28761929