Cross-cultural adaptation of the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) to Brazilian Portuguese

Article Arq Neuropsiquiatr 2011;69(2-B):316-319 Cross-cultural adaptation of the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) to Brazilian Portuguese Flávio Augusto Sekeff-Sallem1, Paulo Caramelli2, Egberto Reis Barbosa1 ABSTRACT Cervical dystonia (CD) is a prevalent and incapacitating movement disorder which needs a thorough clinical evaluation of every patient to better tailor treatment strategies. In Brazil, there are no validated CD scales that measure the burden of dystonia. The aim of our study was to translate and adapt the Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) to Brazilian Portuguese. After translation and back-translation according to international methods, a pre-test was carried out with 30 patients. Patients under 8 years of formal schooling had severe difficulty in understanding the whole scale. The scale went through a remodeling process, without loss of its conceptual and semantic properties. The new scale was tested in 15 patients, with good understanding scores. We are now in the process of validation of the adapted scale. Key words: cervical dystonia, scales, cross-cultural adaptation. Adaptação transcultural da escala de distonia cervical de Toronto (TWSTRS) para o português RESUMO Distonia cervical (DC) é um transtorno de movimento prevalente e incapacitante, sendo uma avaliação global e consistente de cada paciente necessária para a melhor intervenção diagnóstica e terapêutica. No Brasil, não há escalas validadas para avaliar o impacto da DC. O objetivo deste trabalho foi traduzir e adaptar uma escala mundialmente conhecida e usada, a Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS) para o português. Após a tradução e retro-tradução da escala segundo as normas e critérios internacionais, realizamos o pré-teste com 30 pacientes, sendo que o completo entendimento da escala ficou prejudicado nos pacientes com escolaridade abaixo de 8 anos. Tornou-se necessária a re-adaptação da escala, com modificação de alguns elementos, tentando manter-se sua integridade conceitual e semântica. Após pré-teste adicional com 15 pacientes, verificou-se que a escala foi completamente entendida por praticamente todos os pacientes. A validação da escala está em andamento. Palavras-chave: distonia cervical, escalas, adaptação trans-cultural. Correspondence Flávio Augusto Sekeff-Sallem Rua Dr. Diogo de Faria 1226 / ap. 24 04037-004 São Paulo SP - Brasil E-mail: Received 12 July 2010 Received in final form 22 September 2010 Accepted 29 September 2010 316 Cervical dystonia (CD) is a common focal dystonia1,2 and is characterized by twisting or turning of the neck, or deviation of the head, caused by involuntary muscle contraction2,3. Its prevalence ranges from 57 to 90 cases per million in USA and Europe, although figures as high as 233 per million have been found in Finland2. 1 The clinical picture of CD is quite heterogeneous, with variations in rhythm, speed, amplitude, duration and direction of the dystonic movements 1,4. Patients may present with head deviations in one plane only or present complex movements of the head and neck around multiple axes5. Neurology Division, Hospital das Clínicas of the University of São Paulo School of Medicine, São Paulo SP, Brazil; 2Department of Internal Medicine, Faculty of Medicine, Federal University of Minas Gerais, Belo Horizonte MG, Brazil. Arq Neuropsiquiatr 2011;69(2-B) Besides motor abnormalities, patients may also suffer from pain. About 70-80% of CD patients complain of neck pain, which can be intermittent or continuous and contribute significantly to disability6. This combination of signs and symptoms may ultimately lead to impairment of quality of life (QOL), as patients may suffer from disability due to cervical pain or incapacitating involuntary head movements, social embarrassment, and difficulties in performing daily life and social activities6,7. The impact CD has on QOL of affected individuals must be measured by validated tools so to produce reliable data necessary to better understand its natural history, evaluate the response to treatment and to collect accurate information for clinical trials. There are several scales that have been used to evaluate CD1,8-13, but none has been validated to Brazilian Portuguese so far. The Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS)1, a investigator-applied scale, is the gold standard tool for evaluation of CD. It is composed of three subscales designed to assess the motor aspects of CD, measure the impact of CD on activities of daily living, and quantify pain caused by CD and its consequences on life of affected individuals. In this paper, we present the results of the cross-cultural adaptation of the TWSTRS to Brazilian Portuguese. METHOD This study was carried out at the Movement Disorders Division of the Hospital das Clínicas of the University of São Paulo School of Medicine, in São Paulo, SP, Brazil. The inclusion criteria were: [1] clinical diagnosis of cervical dystonia; [2] 18 years of age or older; [3] patients not presenting cognitive deficits, as indicated by scores above education-adjusted cut-off values at the MiniMental State Examination (MMSE)14,15; [4] full acceptance by the patient in participating into the study, signing the free informed consent. The study was approved by the local ethics board committee. The original authors authorized the full adaptation/validation of the scale. The steps taken for the adaptation were in accordance with the guidelines proposed by Guillemin et al.16, and have been replicated by several authors17-20. First, the entire original scale was translated into Brazilian Portuguese by two independent Portuguese-speaking translators who were aware of the objectives of the study. This translation was done word for word, and the translators translated the entire scale. This translated scale was then back translated by two independent English-speaking translators who were not aware of the objectives of the scale. This back-translated scale was discussed with the translators, and so a final translated version of the original scale was produced. This version underwent revision by a committee Toronto Western Torticollis Rating Scale Sekeff-Sallem et al. composed of three neurologists with expertise in movement disorders. Each judge received a copy of the original scale and of its translated version, along with semantic and cultural questionnaire forms. The rate of agreement among judges was over 80%, with few suggestions as for some items of the scale that seemed to be more culturally appropriate, which were carried out after discussion between the author and the judges. So, a revised version of the scale was produced. We then carried out a pre-test with 30 CD patients, separated in three 10-patient groups according to their educational level: [1] ≤4 years; [2] 5 to 7 years; and [3] ≥8 years of schooling, aiming to evaluate how those patients would understand the revised sc (...truncated)