Literature DB >> 19224613

Friedreich's ataxia impact scale: a new measure striving to provide the flexibility required by today's studies.

Stefan J Cano1, Afsane Riazi, Anthony H V Schapira, J Mark Cooper, Jeremy C Hobart.   

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. (c) 2009 Movement Disorder Society.

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Year:  2009        PMID: 19224613     DOI: 10.1002/mds.22420

Source DB:  PubMed          Journal:  Mov Disord        ISSN: 0885-3185            Impact factor:   10.338


  8 in total

Review 1.  Emerging therapies in Friedreich's ataxia.

Authors:  Tanya V Aranca; Tracy M Jones; Jessica D Shaw; Joseph S Staffetti; Tetsuo Ashizawa; Sheng-Han Kuo; Brent L Fogel; George R Wilmot; Susan L Perlman; Chiadi U Onyike; Sarah H Ying; Theresa A Zesiewicz
Journal:  Neurodegener Dis Manag       Date:  2016

2.  Rasch analysis of clinical outcome measures in spinal muscular atrophy.

Authors:  Stefan J Cano; Anna Mayhew; Allan M Glanzman; Kristin J Krosschell; Kathryn J Swoboda; Marion Main; Birgit F Steffensen; Carole Bérard; Françoise Girardot; Christine A M Payan; Eugenio Mercuri; Elena Mazzone; Bakri Elsheikh; Julaine Florence; Linda S Hynan; Susan T Iannaccone; Leslie L Nelson; Shree Pandya; Michael Rose; Charles Scott; Reza Sadjadi; Mackensie A Yore; Cynthia Joyce; John T Kissel
Journal:  Muscle Nerve       Date:  2013-07-26       Impact factor: 3.217

3.  An open-label trial in Friedreich ataxia suggests clinical benefit with high-dose resveratrol, without effect on frataxin levels.

Authors:  Eppie M Yiu; Geneieve Tai; Roger E Peverill; Katherine J Lee; Kevin D Croft; Trevor A Mori; Barbara Scheiber-Mojdehkar; Brigitte Sturm; Monika Praschberger; Adam P Vogel; Gary Rance; Sarah E M Stephenson; Joseph P Sarsero; Creina Stockley; Chung-Yung J Lee; Andrew Churchyard; Marguerite V Evans-Galea; Monique M Ryan; Paul J Lockhart; Louise A Corben; Martin B Delatycki
Journal:  J Neurol       Date:  2015-04-07       Impact factor: 4.849

Review 4.  Ataxia rating scales--psychometric profiles, natural history and their application in clinical trials.

Authors:  Jonas Alex Morales Saute; Karina Carvalho Donis; Carmen Serrano-Munuera; David Genis; Luís Torres Ramirez; Pilar Mazzetti; Luis Velázquez Pérez; Pilar Latorre; Jorge Sequeiros; Antoni Matilla-Dueñas; Laura Bannach Jardim
Journal:  Cerebellum       Date:  2012-06       Impact factor: 3.847

5.  Can the ARAT Be Used to Measure Arm Function in People With Cerebellar Ataxia?

Authors:  Rachel Reoli; Kendra Cherry-Allen; Amanda Therrien; Jennifer Keller; Kristan Leech; Abigail Leddy Whitt; Amy Bastian
Journal:  Phys Ther       Date:  2021-02-04

Review 6.  Documenting manifestations and impacts of autosomal recessive spastic ataxia of Charlevoix-Saguenay to develop patient-reported outcome.

Authors:  Marjolaine Tremblay; Laura Girard-Côté; Bernard Brais; Cynthia Gagnon
Journal:  Orphanet J Rare Dis       Date:  2022-10-01       Impact factor: 4.303

Review 7.  Standardized Assessment of Hereditary Ataxia Patients in Clinical Studies.

Authors:  Brigitte K Paap; Sandra Roeske; Alexandra Durr; Ludger Schöls; Tetsuo Ashizawa; Sylvia Boesch; Lisa M Bunn; Martin B Delatycki; Paola Giunti; Stéphane Lehéricy; Caterina Mariotti; Jörg Melegh; Massimo Pandolfo; Chantal M E Tallaksen; Dagmar Timmann; Shoji Tsuji; Jörg Bela Schulz; Bart P van de Warrenburg; Thomas Klockgether
Journal:  Mov Disord Clin Pract       Date:  2016-02-11

8.  Impact of Friedreich's Ataxia on health-care resource utilization in the United Kingdom and Germany.

Authors:  Paola Giunti; Julia Greenfield; Alison J Stevenson; Michael H Parkinson; Jodie L Hartmann; Ruediger Sandtmann; James Piercy; Jamie O'Hara; Leo Ruiz Casas; Fiona M Smith
Journal:  Orphanet J Rare Dis       Date:  2013-02-28       Impact factor: 4.123

  8 in total

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