Brazilian cross-cultural translation and adaptation of the "Questionnaire of Life Quality Specific for Myasthenia Gravis - 15 items"

Abstract

Support: This study was supported by CAPES, CNPq and Fapemig. AMM received a CAPES scholarship during her Master course. Conflict of interest:There is no conflict of interest to declare.Received 28 January 2013; Received in final form 10 July 2013; Accepted 17 July 2013. ABSTRACTObjective: To translate and to perform the cross-cultural adaptation of the "Questionnaire of Life Quality Specific for Myasthenia Gravis -15 items" (MG-QOL15). Method: The original English version of the questionnaire was translated into Portuguese. This version was revised and translated back into English. Later, both English versions were compared and the divergences were corrected in the Portuguese text. At a second stage, ten patients with MG followed at the Neuromuscular Diseases Clinic from the University Hospital, Universidade Federal de Minas Gerais answered the questionnaire. The authors analyzed the difficulties and misunderstandings in the application of the questionnaire. Results: The questions 8, 13 and 15 were considered difficult to understand and were modified in the final Portuguese version. Most patients (70%) had a total score above 25, and the statements 3, 8 and 9 showed the highest scores. Conclusion: The Brazilian version of the questionnaire MG-QOL15 seems to be a promising tool for the assessment of Brazilian patients with MG.Keywords: myasthenia gravis, quality of life, questionnaire. RESuMoObjetivo: Realizar a tradução e a adaptação transcultural do "Questionário de Qualidade de Vida Específico para Miastenia Gravis -15 itens" (MG-QOL15). Método: Inicialmente, foi realizada a tradução do instrumento original em inglês para o português. Esta versão foi revisada e retrotraduzida para o inglês. A versão retrotraduzida foi comparada à versão original em inglês, sendo corrigidas as divergências no texto em português. Em um segundo momento, dez pacientes com MG acompanhados na Clínica de Doenças Neuromusculares do Hospital das Clíni-cas da Universidade Federal de Minas Gerais responderam ao questionário. Na aplicação do questionário, os itens mal compreendidos foram analisados pelos autores. Resultados: Os itens 8, 13 e 15 foram considerados de difícil compreensão e modificados na versão final em português. A maioria dos pacientes (70%) apresentou uma pontuação total superior a 25, sendo que os itens 3, 8 e 9 apresentaram os escores mais elevados. Conclusão: A versão brasileira do MG-QOL15 é um instrumento promissor para a avaliação de pacientes brasileiros com MG.Palavras-chave: miastenia gravis, qualidade de vida, questionário.

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

“…We excluded nine patients due to cognitive impairment, illiteracy and/or other chronic diseases and four patients because of a diagnosis of congenital myasthenic syndrome. The final version of the MGC was administered to in a final sample of 27 MG patients and the total score was compared to a Portuguese version of the MG-QOL-15, validated in Brazil, and commonly used to assess quality of life in MG 19 . The MG-QOL-15 is an effective, quick, and easy-to-use instrument, consisting of 15 items, graded on a scale of 0-4, evaluating three dimensions of the HRQoL.…”

“…These 15 items efficiently evaluate physical, social, and psychological aspects of life, which are essential components for the interpretation of the HRQoL. The instrument does not have a specific cut-off value 16,19 .…”

“…We found only three specific tools for evaluating HRQoL in MG patients in the international scientific literature (Myasthenia Gravis Questionnaire 13 , Myasthenia Gravis-specific Activities of Daily Living Profile 14,15 , Questionnaire of Life Quality Specific for Myasthenia Gravis -15 items (MG-QOL- 15) 16 ) and two instruments to assess the clinical evaluation of patients with MG (Quantitative Myasthenia Gravis Score 17 and Myasthenia Gravis Composite scale (MGC) 18 ). From these instruments, only the MG-QOL-15 has been translated into Brazilian Portuguese 19 . Therefore, it was important to study the translation, cultural adaptation and validation of the MGC in Brazilian patients.…”

Investigation on life quality in patients with myasthenia gravis in Croatia

“…Oboljeli imaju fizičke i mentalne tegobe [7,12,[14][15][16][17][18] kao što su bol, tjeskoba, depresija, poremećaji spavanja, te ograničenja u svakodnevnim biološkim, psihološkim i društvenim aktivnostima, te umanjenu radnu sposobnost. Novija istraživanja istražuju stupanj kvalitete života oboljelih od miastenije gravis [12,[14][15][16][17][18][19][20][21][22], s svrhom poboljšanja stupnja kvalitete u kliničkoj praksi i u svakodnevnom životu.…”

“…Novija istraživanja istražuju stupanj kvalitete života oboljelih od miastenije gravis [12,[14][15][16][17][18][19][20][21][22], s svrhom poboljšanja stupnja kvalitete u kliničkoj praksi i u svakodnevnom životu. U ovom članku prvi se put istražuje stupanj kvalitete života oboljelih, i to na cijelom teritoriju Republike Hrvatske [RH], dok su prethodna istraživanja u RH opisivala rezultate u određe-nim regijama [Istra, Kvarner i Gorski kotar] [23,24] ili u bolničkim ustanovama grada Zagreba [25][26][27][28][29] te nisu imala za cilj izučavanje stupnja kvalitete života oboljelih.…”