Brazilian-Portuguese translation, cross-cultural adaptation and validation of the Myasthenia Gravis Composite scale. A multicentric study

ABSTRACT

Objective To perform the translation, cultural adaptation and validation of the Myasthenia Gravis Composite (MGC) scale in Brazil.

Methods The study was conducted at three neuromuscular disease research centers in accordance with the international ethical standards, following a multi-modal approach and was conducted in three steps consisting of translation, cultural adaptation, and validation according to international guidelines. The final version of the MGC was applied in a sample of 27 MG patients and the total score was compared to a Portuguese version of the MG-QOL-15.

Results The internal consistency verified by Cohen’s Kappa test was excellent (0.766). The correlation between the MGC and MG-QOL-15 was strong (R = 0.777; p = 0.000). No significant differences were found between the responses of patients in the first and second applications of the MGC.

Conclusion The MGC scale, validated into Brazilian Portuguese, has proven to be a reliable instrument that is easy to use, and is highly reproducible.

RESUMO

Objetivo Realizar a tradução e a adaptação transcultural da escala composta de Miastenia Grave (ECMG) Myasthenia Gravis Composite (MGC) no Brasil.

Métodos O estudo foi realizado em três centros de investigação em doenças neuromusculares, de acordo com as normas éticas internacionais, consistindo em tradução, adaptação cultural e validação de acordo com as diretrizes internacionais. A versão final do MGC ECMG foi aplicada em vinte e sete pacientes com MG e a pontuação total foi comparada ao questionário MG-QOL 15.

Resultados A consistência interna verificada pelo teste Kappa de Cohen foi excelente (0,766) e a correlação entre o a ECMG MGC e MG-QOL 15 foi positiva (R = 0,777; p = 0,000). Não foram encontradas diferenças entre as respostas dos pacientes na primeira e segunda aplicação da MGC.

Conclusão A ECMG escala MGC validada para o Português do Brasil provou ser um instrumento confiável, de fácil aplicação e altamente reprodutível.

myasthenia gravis - translating - surveys and questionaires

miastenia gravis - tradução - inquéritos e questionários

• References

• 1 Drachman DB. Myasthenia gravis. N Engl J Med. 1994;330(25):1797-810.
• 2 Patrick J, Lindstrom J. Autoimmune response to acetylcholine receptor. Science. 1973;180(4088):871-2. doi:10.1056/NEJM199406233302507
• 3 Carr AS, Cardwell CR, McCarron PO, McConville J. A systematic review of population based epidemiological studies in Myasthenia Gravis. BMC Neurology. 2010;10(1):46. doi:10.1186/1471-2377-10-46
• 4 Mao ZF, Mo XA, Qin C, Lai YR, Hartman TCO. Course and prognosis of myasthenia gravis: a systematic review. Eur J Neurol. 2010;17(7):913-21. doi:10.1111/j.1468-1331.2010.03017.x
• 5 Jaretzki A 3rd, Barohn RJ, Ernstoff RM, Kaminski HJ, Keesey JC, Penn AS et al. Myasthenia gravis: recommendations for clinical research standards. Ann Thorac Surg. 2000;70(1):327-34. doi:10.1016/S0003-4975(00)01595-2
• 6 Cella DF, Tulsky DS. Measuring quality of life today: methodological aspects. Oncology (Willinston Park). 1990;4(5):29-38.
• 7 Tindall RS, Rollins JA, Phillips JT, Greenlee RG, Wells L, Belendiuk G. Preliminary results of a double-blind, randomized, placebo-controlled trial of cyclosporine in myasthenia gravis. N Engl J Med. 1987;316(12):719-24. doi:10.1056/NEJM198703193161205
• 8 Tindall RS, Phillips JT, Rollins JA, Wells L, Hall K. A clinical therapeutic trial of cyclosporine in myasthenia gravis. Ann N Y Acad Sci. 1993;681 1 Myasthenia GR:539-51. doi:10.1111/j.1749-6632.1993.tb22937.x
• 9 Tonali P, Padua L, Sanguinetti C, Padua R, Romanini E, Amadio P. Outcome research and patient-oriented measures in the multiperspective assessment of neurological and musculoskeletal disorders. Consensus Conference: Third Roman Neurophysiology Day, Outcome Research in Neurology and in Musculoskeletal Disorders – 24 October 1998. Ital J Neurol Sci. 1999;20(2):139-40. doi:10.1007/s100720050022
• 10 Raggi A, Leonardi M, Antozzi C, Confalonieri P, Maggi L, Cornelio F et al. Concordance between severity of disease, disability and health-related quality of life in myasthenia gravis. Neurol Sci. 2010;31(1):41-5. doi:10.1007/s10072-009-0167-y
• 11 Leonardi M, Raggi A, Antozzi C, Confalonieri P, Maggi L, Cornelio F et al. The relationship between health, disability and quality of life in myasthenia gravis: results from an Italian study. J Neurol. 2010;257(1):98-102. doi:10.1007/s00415-009-5279-z
• 12 Morris J, Perez D, McNoe B. The use of quality of life data in clinical practice. Qual Life Res. 1998;7(1):85-91. doi:10.1023/A:1008893007068
• 13 Padua L, Evoli A, Aprile I, Caliandro P, Batocchi AP, Punzi C et al. Myasthenia gravis outcome measure: development and validation of a disease-specific self-administered questionnaire. Neurol Sci. 2002;23(2):59-68. doi:10.1007/s100720200027
• 14 Wolfe GI, Herbelin L, Nations SP, Foster B, Bryan WW, Barohn RJ. Myasthenia gravis activities of daily living profile. Neurology. 1999;22;52(7):1487. doi:10.1212/WNL.52.7.1487
• 15 Muppidi S. The myasthenia gravis: specific activities of daily living profile. Ann N Y Acad Sci. 2012;1274(1):114-9. doi:10.1111/j.1749-6632.2012.06817.x
• 16 Burns TM, Grouse CK, Conaway MR, Sanders DB. Construct and concurrent validation of the MG-QOL15 in the practice setting. Muscle Nerve. 2010;41(2):219-6. doi:10.1002/mus.21609
• 17 Besinger UA, Toyka KV, Hömberg M, Heininger K, Hohlfeld R, Fateh-Moghadam A. Myasthenia gravis: long-term correlation of binding and bungarotoxin blocking antibodies against acetylcholine receptors with changes in disease severity. Neurology. 1983;33(10):1316-21. doi:10.1212/WNL.33.10.1316
• 18 Burns TM, Conaway MR, Cutter GR, Sanders DB. Construction of an efficient evaluative instrument for myasthenia gravis: the MG composite. Muscle Nerve. 2008;38(6):1553-62. doi:10.1002/mus.21185
• 19 Mourão AM, Araújo CM, Barbosa LS, Gomez RS, Burns TM, Lemos SM et al. Brazilian cross-cultural translation and adaptation of the “Questionnaire of Life Quality Specific for Myasthenia Gravis - 15 items”. Arq. Neuropsiquiatr. 2013;71(12):955-58. doi:10.1590/0004-282X20130180
• 20 Sadjadi R, Conaway M, Cutter G, Sanders DB, Burns TM. Psychometric evaluation of the myasthenia gravis composite using Rasch analysis. Muscle Nerve. 2012;45(6):820-5. doi:10.1002/mus.23260
• 21 Guillemin F, Bombardier C, Beaton D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol. 1993;46(12):1417-32. doi:10.1016/0895-4356(93)90142-N
• 22 Guillemin F. Cross-cultural adaptation and validation of health status measures. Scand J Rheumatol. 1995;24(2):61-3. doi:10.3109/03009749509099285
• 23 Reichenheim ME, Moraes CL. Operationalizing the cross-cultural adaptation of epidemological measurement instruments. Rev Saúde Pública. 2007;41(4):665-73. doi:10.1590/S0034-89102006005000035
• 24 Maher CG, Latimer J, Costa LOP. The relevance of cross-cultural adaptation and clinimetrics for physical therapy instruments. Rev Bras Fisioter. 2007;11(4):245-52. doi:10.1590/S1413-35552007000400002
• 25 Beaton D, Bombardier C, Guillemin F, Ferraz MB. Guidelines for process of cross-cultural adaptation of self-report measures. Spine. 2000;(25)24:3186-91. doi:10.1097/00007632-200012150-00014
• 26 Oliveira EF, Urbano JJ, Santos IR, Silva AS, Guimarães LL, Peixoto RAO et al. Brazilian translation, cross-cultural adaptation and validation of the MG Composite scale and Quantitative Myasthenia gravis testing form: a multicentric study protocol. Man Ther Posturology Rehabil J. 2016;14:1-5. doi:10.17784/mtprehabjournal.2016.14.342
• 27 Benatar M, Sanders DB, Burns TM, Cutter GR, Guptill JT, Baggi F et al. Recommendations for myasthenia gravis clinical trials. Muscle Nerve. 2012;45(6):909-17. doi:10.1002/mus.23330
• 28 Burns TM, Conaway M, Sanders DB, MG Composite and MG-QOL15 Study Group. The MG Composite. A valid and reliable outcome measure for myasthenia gravis. Neurology. 2010;74(18):1434-40. doi:10.1212/WNL.0b013e3181dc1b1e
• 29 Burns TM. The MG composite: an outcome measure for myasthenia gravis for use in clinical trials and everyday practice. Ann N Y Acad Sci. 2012;1274(1):99-106. doi:10.1111/j.1749-6632.2012.06812.x
• 30 Morris J, Perez D, McNoe B. The use of quality of life data in clinical practice. Qual Life Res;1998;7(1):85-91. doi:10.1023/A:1008893007068