Validation of the German version of the extended ALS functional rating scale as a patient-reported outcome measure

Journal of Neurology

Volumn 260, Issue 9, 2013, Pages 2242-2255

  Abdulla, Susanne ^a,b,c   Vielhaber, Stefan ^a,c   Körner, Sonja ^b   Machts, Judith ^c   Heinze, Hans Jochen ^a,c,d   Dengler, Reinhard ^b   Petri, Susanne ^b  

^a OTTO VON GUERICKE UNIVERSITY   (Germany)

^b HANNOVER MEDICAL SCHOOL   (Germany)

^c GERMAN CENTER FOR NEURODEGENERATIVE DISEASES DZNE   (Germany)

^d LEIBNIZ INSTITUTE FOR NEUROBIOLOGY   (Germany)

Author keywords

ALS; ALSFRS functional rating scale; German version; Patient reported outcome measure; Validation

Indexed keywords

ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; AMYOTROPHIC LATERAL SCLEROSIS FUNCTIONAL RATING SCALE; ARTICLE; CONVERGENT VALIDITY; CRONBACH ALPHA COEFFICIENT; FACTORIAL ANALYSIS; FEMALE; FUNCTIONAL STATUS; HUMAN; INTERNAL CONSISTENCY; LUNG FUNCTION; MAJOR CLINICAL STUDY; MALE; MOVEMENT (PHYSIOLOGY); OUTCOME ASSESSMENT; PRINCIPAL COMPONENT ANALYSIS; PRIORITY JOURNAL; PSYCHOMETRY; RATING SCALE; RELIABILITY; SCORING SYSTEM; SELF REPORT; SPASTICITY; TEST RETEST RELIABILITY; TONGUE; VARIMAX ROTATION;

ACTIVITIES OF DAILY LIVING; ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; FEMALE; HUMANS; LANGUAGE; MALE; MIDDLE AGED; OUTCOME AND PROCESS ASSESSMENT (HEALTH CARE); REPRODUCIBILITY OF RESULTS; SELF REPORT; SEVERITY OF ILLNESS INDEX; YOUNG ADULT;

EID: 84884352115     PISSN: 03405354     EISSN: 14321459     Source Type: Journal    
DOI: 10.1007/s00415-013-6955-6     Document Type: Article

References (33)

1. Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, Nakanishi A (1999) The ALSFRS-R: a revised ALS functional rating scale that incorporates the assessments of respiratory function. BDNF ALS Study Group (Phase III). J Neurol Sci 169:13-21
2. Montes J, Levy G, Albert S, Kaufmann P, Buchsbaum R, Gordon PH, Mitsumoto H (2006) Development and evaluation of a self-administered version of the ALSFRS-R. Neurology 67:1294-1296
3. Cedarbaum JM, Stambler N (1997) Performance of the Amyotrophic Lateral Sclerosis Rating Scale (ALSFRS) in multicenter trials. J Neurol Sci 152(Suppl 1):S1-S9
4. Ohashi Y, Tashiro K, Itoyama Y, Nakano I, Sobue G, Nakamura S, Sumino S, Yanagisawa N (2001) Study of functional rating scale for amytrophic lateral sclerosis: revised ALSFRS (ALSFRS-R) Japanese version. No To Shinkei 53:346-355
5. Kim HY, Park KH, Koh SH, Lee SC, Nam YH, Kim J, Kim SH (2007) Korean version of Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised: a pilot study on the reliability and validity. J Korean Neurol Assoc 25:149-154
6. Guedes K, Pereira C, Pavan K, Valério BC (2010) Cross-cultural adaptation and validation of ALS functional rating scale-revised in Portuguese language. Arq Neuropsiquiatr 68:44-47
7. Campos TS, Rodríguez-Santos F, Esteban J, Vázquez PC, Mora Paradina JS, Carmona AC (2010) Spanish adaptation of the revised Amyotrophic Lateral Sclerosis Rating Scale (ALSFRS-R). Amyotroph Lateral Scler 11:475-477
8. Atsuta N, Watanabe H, Ito M, Nakamura R, Senda J, Kato S, Sobue G (2011) Development of a telephone survey system for patients with amyotrophic lateral sclerosis using the ALSFRS-R (Japanese version) and application of this system in a longitudinal multicenter study. Brain Nerve 63:491-496
9. Kaufmann P, Levy G, Montes J, Buchsbaum R, Barsdorf AI, Battista V, Arbing R, Gordon PH, Mitsumoto H, Levin B, Thompson JL, QALS study group (2007) Excellent inter-rater, intra-rater, and telephone-administered reliability of the ALSFRS-R in a multicenter trial. Amyotroph Lateral Scler 8:42-46
10. Kasarskis EJ, Dempsey Hall L, Thompson MM, Luu LC, Mendiondo M, Kryscio R (2005) Rating the severity of ALS by caregivers over the telephone using the ALSFRS-R. Amyotroph Lateral Scler Other Motor Neuron Disord 6:50-54
11. Miano B, Stoddard GJ, Davis S, Bromberg MB (2004) Inter-evaluator reliability of the ALS functional rating scale. Amyotroph Lateral Scler Other Motor Neuron Disord 5:235-239
12. Mannino M, Cellura E, Grimaldi G, Volanti P, Piccoli F, La Bella V (2007) Telephone follow-up for patients with amyotrophic lateral sclerosis. Eur J Neurol 14:79-84
13. Maier A, Holm T, Wicks P, Steinfurth L, Linke P, Münch C, Meyer R, Meyer T (2012) Online assessment of ALS functional rating scale compares well to in-clinic evaluation: a prospective trial. Amyotroph Lateral Scler 13:210-216
14. Wicks P, Massagli MP, Wolf C, Heywood J (2009) Measuring function in advanced ALS: validation of ALSFRS-EX extension items. Eur J Neurol 16:353-359
15. Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron Diseases (2000) El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disorder 1:293-299
16. Roche JC, Rojas-Garcia R, Scott KM, Scotton W, Ellis CE, Burman R, Wijesekera L, Turner MR, Leigh PN, Shaw CE, Al-Chalabi A (2012) A proposed staging system for amyotrophic lateral sclerosis. Brain 135:847-852
17. Turner MR, Wicks P, Brownstein CA, Massagli MP, Toronjo M, Talbot K, Al-Chalabi A (2011) Concordance between site of onset and limb dominance in amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatry 82:853-854
18. Bohannon RW, Smith MB (1987) Interrater reliability of a modified Ashworth scale of muscle spasticity. Phys Ther 67:206-207
19. Jenkinson C, Fitzpatrick R, Brennan C, Bromberg M, Swash M (1999) Development and validation of a short measure of health status for individuals with amyotrophic lateral sclerosis/motor neurone disease: the ALSAQ-40. J Neurol 246 Suppl 3:III16-21
20. Just N, Bautin N, Danel-Brunaud V, Debroucker V, Matran R, Perez T (2010) The Borg dyspnoea score: a relevant clinical marker of inspiratory muscle weakness in amyotrophic lateral sclerosis. Eur Respir J 35:353-360
21. Cohen J (1988) Statistical power analysis for the behavioural sciences. Lawrence Erlbaum Associates, Hillsdale
22. Ellis CM, Simmons A, Jones DK, Bland J, Dawson JM, Horsfield MA, Williams SC, Leigh PN (1999) Diffusion tensor MRI assesses corticospinal tract damage in ALS. Neurology 53:1051-1058
23. Streiner DL, Norman GR (2003) Health measurement scales, 3rd edn. Oxford University Press, Oxford
24. Franchignoni F, Mora G, Giordano A, Volanti P, Chiò A (2013) Evidence of multidimensionality in the ALSFRS-R scale: a critical appraisal on its measurement properties using Rasch analysis. J Neurol Neurosurg Psychiatry Epub ahead of print 2013 doi: 10.1136/jnnp-2012-304701
25. Voustianiouk A, Seidel G, Panchal J, Sivak M, Czaplinski A, Yen A, Appel SH, Lange DJ (2008) ALSFRS and Appel ALS scores: discordance with disease progression. Muscle Nerve 37:668-672
26. Haverkamp LJ, Appel V, Appel SH (1995) Natural history of amyotrophic lateral sclerosis in a database population. Validation of a scoring system and a model for survival prediction. Brain 11:707-719
27. Shoesmith CL, Findlater K, Rowe A (2007) Strong MJ (2007) Prognosis of amyotrophic lateral sclerosis with respiratory onset. J Neurol Neurosurg Psychiatry 78:629-631
28. Tanaka Y, Yoshikura N, Harada N, Yamada M, Koumura A, Sakurai T, Hayashi Y, Kimura A, Hozumi I, Inuzuka T (2012) Late-onset patients with sporadic amyotrophic lateral sclerosis in Japan have a higher progression rate of ALSFRS-R at the time of diagnosis. Intern Med 51:579-584
29. Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159-174
30. Turner MR, Cagnin A, Turkheimer FE, Miller CC, Shaw CE, Brooks DJ, Leigh PN, Banati RB (2004) Evidence of widespread cerebral microglial activation in amyotrophic lateral sclerosis: an [11C](R)-PK11195 positron emission tomography study. Neurobiol Dis 15:601-609
31. Menke RA, Abraham I, Thiel CS, Filippini N, Knight S, Talbot K, Turner MR (2012) Fractional anisotropy in the posterior limb of the internal capsule and prognosis in amyotrophic lateral sclerosis. Arch Neurol 69:1493-1499
32. Iwata NK, Kwan JY, Danielian LE, Butman JA, Tovar-Moll F, Bayat E, Floeter MK (2011) White matter alterations differ in primary lateral sclerosis and amyotrophic lateral sclerosis. Brain 134:2642-2655
33. Filippini N, Douaud G, Mackay CE, Knight S, Talbot K, Turner MR (2010) Corpus callosum involvement is a consistent feature of amyotrophic lateral sclerosis. Neurology 75:1645-1652