title: Friedreich's ataxia impact scale: a new measure striving to provide the flexibility required by today's studies.
abstract: To develop, using modern techniques of rating scale construction, a new patient reported rating scale for clinical studies of Friedreich's ataxia (FA) that strives to meet the measurement needs of different types of study. Qualitative research methods were used to generate a conceptual framework of the impact of FA, and a pool of items necessary to construct a subscale for each area identified. This item pool was then administered to 492 people with FA. Rasch measurement methods guided scale construction. Eight areas for measurement were identified (speech, upper limb functioning, lower limb functioning, body movement, complex tasks, isolation, mood, self perceptions), and a 126-item scale constructed (FA Impact Scale; FAIS). In addition, three shorter versions were developed to illustrate how the FAIS can be adapted for observational studies, more disabled, and less disabled samples of people with FA. The FAIS is a psychometrically sound 126-item measure from which subsets of items can be selected to meet the needs of different studies. Importantly, all versions can be referred back to the original scale. This study shows one of the many clinical advantages of using Rasch measurement methods to construct rating scales.
authors.affiliation: Neurological Outcome Measures Unit, Institute of Neurology, University College London, London, United Kingdom.
authors.forename: Stefan J
authors.initials: SJ
authors.lastname: Cano
authors.forename: Afsane
authors.initials: A
authors.lastname: Riazi
authors.forename: Anthony H V
authors.initials: AH
authors.lastname: Schapira
authors.forename: J Mark
authors.initials: JM
authors.lastname: Cooper
authors.forename: Jeremy C
authors.initials: JC
authors.lastname: Hobart
mesh_terms: D000293:Adolescent; D000328:Adult; D000339:Affect; D000368:Aged; D000369:Aged, 80 and over; D005069:Evaluation Studies as Topic; D005121:Extremities / Q000503:physiopathology; D005260:Female; D005621:Friedreich Ataxia / Q000175:diagnosis* / Q000503:physiopathology*; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D009068:Movement / Q000502:physiology; D011594:Psychometrics / Q000379:methods; D012720:Severity of Illness Index; D013060:Speech / Q000502:physiology; D011795:Surveys and Questionnaires; D055815:Young Adult