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Developmental Validity of the revised improved version of the Fragile X-associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS)

M. Tosin, G. Stebbins, C. Goetz, R. Hagerman, D. Hessl, M. Zolecki, P. Todd, M. Leehey, D. Hall (Chicago, USA)

Meeting: 2022 International Congress

Abstract Number: 886

Keywords: Fragile X tremor ataxia syndrome, Scales

Category: Rating Scales

Objective: To qualitatively validate the revised improved version of the Fragile X-associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS) for motor signs assessment.

Background: Clinimetric analyses of the first version of the FXTAS-RS showed weaknesses needing revision. Cognitive pretesting (CPT) is a qualitative approach used in scale development, preceding field testing, to assess the difficulty of examiners and examinees in completing the instrument.

Method: Rounds of CPT interviews were conducted with a convenience sample five movement disorders specialists and five patients with FXTAS following a semi-structured script and notes to determine whether the revised improved version of the FXTAS-RS is comprehensible, comprehensive, and relevant to capture the FXTAS motor signs. Insights gained from participants’ experiences using the FXTAS-RS were subjected to verbal protocol analysis (VPA) (1). VPA data were categorized according to comprehensibility, comprehensiveness, and relevance criteria, and were incorporated into the revised improved version of the scale between rounds.

Results: After the second round of the CPT, data saturation was reached, and no further adjustments were required. All insights incorporated into the revised improved version of the scale were categorized as comprehensibility criteria, since for all participants the revised version met the criteria of comprehensiveness and relevance.

Conclusion: Using an iterative approach, the FXTAS-RS demonstrated to be comprehensible, comprehensive, and relevant to assess motor signs in patients with FXTAS. The developmental validity of the revised improved version of the FXTAS-RS was established with the participation of professionals and patients and is now ready for field validation.

References: Stanton NA, Salmon PM, Rafferty LA, Walker GH, Baber C, Jenkins DP. Human Factors Methods. CRC Press; 2017.

To cite this abstract in AMA style:

M. Tosin, G. Stebbins, C. Goetz, R. Hagerman, D. Hessl, M. Zolecki, P. Todd, M. Leehey, D. Hall. Developmental Validity of the revised improved version of the Fragile X-associated Tremor Ataxia Syndrome Rating Scale (FXTAS-RS) [abstract]. Mov Disord. 2022; 37 (suppl 2). https://www.mdsabstracts.org/abstract/developmental-validity-of-the-revised-improved-version-of-the-fragile-x-associated-tremor-ataxia-syndrome-rating-scale-fxtas-rs/. Accessed September 23, 2023.
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