Translation and semantic equivalence of the Brazilian version of the Autism-Specific Quality of Life Items instrument (ASQoL)
Keywords:
Autism Spectrum Disorder, Quality of life, Cross-cultural comparison, Surveys and Questionnaires, TranslationsAbstract
The Autism-Specific Quality of Life Items (ASQoL) is a specific British questionnaire to assess the quality of life of autistic adults. The objective of this study was to obtain the Brazilian version of the ASQoL instrument, with semantic equivalence with the original instrument. The methodology includes six steps: (1) translation of ASQoL into portuguese, done by two translators; (2) pre-test of the translated questionnaires; (3) unification of the questionnaire; (4) back-translation; (5) revision of translations and back-translations; (6) production of a final questionnaire. All the steps to obtain the final version of the ASQoL were carried out with the consent of the authors of the original questionnaire. Respondents, adults with autism, were recruited through online advertisements using social media platforms. In total, 30 respondents participated in the pre-test, in which the two translations were tested. The two translated versions were very similar, and after completion of all steps a final version of the ASQoL was obtained. Therefore, it is concluded that the ASQoL instrument proved to be understandable and easy to apply in the pre-test and that it presents conceptual, semantic, cultural and operational equivalence in relation to the original items, however the psychometric properties need to be evaluated in the Brazilian population.
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ABANTO, J., TSAKOS, G., ARDENGHI, T. M.; PAIVA, S. M.; RAGGIO, D. P.; SHEIHAM, A.; BÖNECKER, M. Responsiveness to change for the Brazilian Scale of Oral Health Outcomes for 5-year-old children (SOHO-5). Health Qual Life Outcomes, v. 11, n. 137 , p. 2-7, 2013. DOI: 10.1186/1477-7525-11-137
AMERICAN PSYCHIATRIC ASSOCIATION. Diagnostic and statistical manual of mental disorders. DSM-5-TR. 5th ed. Washington, DC: APA, 2022. DOI: 10.1176/appi.books.9780890425787
AYRES, M., PARR, J. R.; RODGERS, J.; MASON, D.; AVERY, L.; FLYNN, D. A systematic review of quality of life of adults on the autism spectrum. Autism: The International Journal of Research and Practice, v. 22, n. 7, p. 774-783, 2018. DOI: https://doi.org/10.1177/1362361317714988
BEATON, D. E.; BOMBARDIER, C.; GUILLEMIN, F.; FERRAZ, M. B. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, v. 25, n. 24, p. 3186-3191, 2000. DOI: 10.1097/00007632-200012150-00014
BURGESS, A. F.; GUTSTEIN, S. E. Quality of life for people with autism: raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, v. 12, n. 2, p. 80-86, 2007. DOI: 10.1111/j.1475-3588.2006.00432.x
CANCIO, V.; FAKER, K.; BENDO, C. B.; PAIVA, S. M.; TOSTES, M. A. Individuals with special needs and their families' oral health-related quality of life. Brazilian Oral Research, v. 32, e39, 2018. DOI: 10.1590/1807-3107bor-2018.vol32.0039
CANCIO, V.; FAKER, K.; TOSTES, M. A. Parental perceptions of oral health related quality of life of Brazilian children and adolescents with autism spectrum disorder. Brazilian Dental Science, v. 22, n. 4, p. 497-505, 2019. DOI: 10.14295/BDS.2019.V22I4.1814
CHIANG, H. M.; WINEMAN, I. Factors associated with quality of life in individuals with autism spectrum disorders: a review of literature. Research in Autism Spectrum Disorders, v. 8, n. 8, p. 974-986, 2014. DOI: 10.1016/j.rasd.2014.05.003
CHRISTENSEN, D. L.; BAIO, J.; VAN NAARDEN BRAUN, K.; BILDER, D.; CHARLES, J.; CONSTANTINO, J. N.; DANIELS, J.; DURKIN, M. S.; FITZGERALD, R. T.; KURZIUS-SPENCER, M.; LEE, L. C.; PETTYGROVE, S.; ROBINSON, C.; SCHULZ, E.; WELLS, C.; WINGATE, M. S.; ZAHORODNY, W.; YEARGIN-ALLSOPP, M. Prevalence and characteristics of Autism Spectrum Disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2012. Morbidity and Mortality Weekly Report, v. 65, n. 3, p. 1-23, 2016. DOI: 10.15585/mmwr.ss6503a1
COTTENCEAU, H.; ROUX, S.; BLANC, R.; LENOIR, P.; BONNET-BRILHAULT, F.; BARTHÉLÉMY, C. Quality of life of adolescents with autism spectrum disorders: comparison to adolescents with diabetes. European Child & Adolescent Psychiatry, v. 21, n. 5, p. 289-296, 2012. DOI: 10.1007/s00787-012-0263-z
FARAS, H.; AL ATEEQI, N.; TIDMARSH, L. Autism spectrum disorders. Annals of Saudi Medicine, v. 30, n. 4, p. 295-300, 2010. DOI: 10.4103/0256-4947.65261
GANDEK, B.; WARE JR., J. E. Methods for validating and norming translations of health status questionnaires: the IQOLA Project approach. International Quality of Life Assessment. Journal of Clinical Epidemiology, v. 51, n. 11, p. 953-959, 1998. DOI: 10.1016/s0895-4356(98)00086-9
GUILLEMIN, F.; BOMBARDIER, C.; BEATON, D. Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. Journal of Clinical Epidemiology, v. 46, n. 12, p. 1417-1432, 1993. DOI: 10.1016/0895-4356(93)90142-n
GUYATT, G. H. The philosophy of health-related quality of life translation. Quality of Life Research, v. 2, n. 6, p. 461-465, 1993. DOI: 10.1007/BF00422220
HOWLIN, P.; MAGIATI, I. Autism spectrum disorder: outcomes in adulthood. Current Opinion in Psychiatry, v. 30, n. 2, p. 69-76, 2017. DOI: 10.1097/YCO.0000000000000308
IKEDA, E.; HINCKSON, E.; KRÄGELOH, C. Assessment of quality of life in children and youth with autism spectrum disorder: a critical review. Quality of Life Research, v. 23, n. 4, p. 1069-1085, 2014. DOI: 10.1007/s11136-013-0591-6
JENNES-COUSSENS, M.; MAGILL-EVANS, J.; KONING, C. The quality of life of young men with Asperger syndrome: a brief report. Autism: The International Journal of Research and Practice, v. 10, n. 4, p. 403-414, 2006. DOI: 10.1177/1362361306064432
KAMIO, Y.; INADA, N.; KOYAMA, T. A nationwide survey on quality of life and associated factors of adults with high-functioning autism spectrum disorders. Autism: The International Journal of Research and Practice, v. 17, n. 1, p. 15-26, 2013. DOI: 10.1177/1362361312436848
KAMP-BECKER, I.; SCHRÖDER, J.; REMSCHMIDT, H.; BACHMANN, C. J. Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. Psycho-social Medicine, v. 7, Doc03, 2010. DOI: 10.3205/psm000065
MAENNER, M. J.; SHAW, K. A.; BAKIAN, A. V.; BILDER, D. A.; DURKIN, M. S.; ESLER, A.; FURNIER, S. M.; HALLAS, L.; HALL-LANDE, J.; HUDSON, A.; HUGHES, M. M.; PATRICK, M.; PIERCE, K.; POYNTER, J. N.; SALINAS, A.; SHENOUDA, J.; VEHORN, A.; WARREN, Z.; CONSTANTINO, J. N.; DIRIENZO, M.; COGSWELL, M. E. Prevalence and characteristics of Autism Spectrum Disorder among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2018. Morbidity and Mortality Weekly Report, v. 70, n. 11, p. 1-16, 2021. DOI: 10.15585/mmwr.ss7011a1
MAENNER, M. J.; WARREN, Z.; WILLIAMS, A. R.; AMOAKOHENE, E.; BAKIAN, A. V.; BILDER, D. A.; DURKIN, M. S.; FITZGERALD, R. T.; FURNIER, S. M.; HUGHES, M. M.; LADD-ACOSTA, C. M.; MCARTHUR, D.; PAS, E. T.; SALINAS, A.; VEHORN, A.; WILLIAMS, S.; ESLER, A.; GRZYBOWSKI, A.; HALL-LANDE, J.; NGUYEN, R. H. N.; SHAW, K. A. Prevalence and characteristics of Autism Spectrum Disorder Among children aged 8 years – Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. Morbidity and Mortality Weekly Report, v. 72, n. 2, p. 1-14, 2023. DOI: 10.15585/mmwr.ss7202a1
MCCONACHIE, H.; MASON, D.; PARR, J. R.; GARLAND, D.; WILSON, C.; RODGERS, J. Enhancing the validity of a quality of life measure for autistic people. Journal of Autism and Developmental Disorders, v. 48, n. 5, p. 1596-1611, 2018. DOI: 10.1007/s10803-017-3402-z
MOSS, P.; MANDY, W.; HOWLIN, P. Child and adult factors related to quality of life in adults with autism. Journal of Autism and Developmental Disorders, v. 47, n. 6, p. 1830-1837, 2017. DOI: 10.1007/s10803-017-3105-5
POWER, M. J.; GREEN, A. M.; WHOQOL-DIS Group. Development of the WHOQOL disabilities module. Quality of Life Research, v. 19, n. 4, p. 571-584, 2010. DOI: 10.1007/s11136-010-9616-6
RUBIO, D. M.; BERG-WEGER, M.; TEBB, S. S.; LEE, E. S.; RAUCH, S. Objectifying content validity: conducting a content validity study in social work research. Social Work Research, v. 27, n. 2, p. 94-104, 2003. DOI: 10.1093/swr/27.2.94
TESCH, F. C.; OLIVEIRA, B. H.; LEÃO, A. Equivalência semântica da versão em português do instrumento Early Childhood Oral Health Impact Scale [Semantic equivalence of the Brazilian version of the Early Childhood Oral Health Impact Scale]. Cadernos de Saúde Pública, v. 24, n. 8, p. 1897-1909, 2008. DOI: 10.1590/s0102-311x2008000800018
THE WORLD HEALTH ORGANIZATION QUALITY OF LIFE ASSESSMENT (WHOQOL): POSITION PAPER FROM THE WORLD HEALTH ORGANIZATION. Social Science & Medicine. Nov; v.41, n.10, p.1403-9, 1995 DOI: 10.1016/0277-9536(95)00112-k. Acesso em: 12/07/2024.
WAGNER, A. K.; GANDEK, B.; AARONSON, N. K.; ACQUADRO, C.; ALONSO, J.; APOLONE, G.; BULLINGER, M.; BJORNER, J.; FUKUHARA, S.; KAASA, S.; LEPLÈGE, A.; SULLIVAN, M.; WOOD-DAUPHINEE, S.; WARE JR, J. E. Cross-cultural comparisons of the content of SF-36 translations across 10 countries: results from the IQOLA Project. International Quality of Life Assessment. Journal of Clinical Epidemiology, v. 51, n. 11, p. 925-932, 1998. DOI: 10.1016/s0895-4356(98)00083-3
WARE JR., J. E.; GANDEK, B. Methods for testing data quality, scaling assumptions, and reliability: the IQOLA Project approach. International Quality of Life Assessment. Journal of Clinical Epidemiology, v. 51, n. 11, p. 945-952, 1998. DOI: 10.1016/s0895-4356(98)00085-7
WARE JR., J. E.; KELLER, S. D.; GANDEK, B.; BRAZIER, J. E.; SULLIVAN, M. Evaluating translations of health status questionnaires: methods from the IQOLA project. International Quality of Life Assessment. International Journal of Technology Assessment in Health Care, v. 11, n. 3, p. 525-551, 1995. DOI: 10.1017/s0266462300008710
WORLD HEALTH ORGANIZATION. International Statistical Classification of Diseases and Related Health Problems, 11th Revision. Use ICD-11. Geneva: WHO, 2023. Disponível em: http://icd.who.int/. Acesso em :12/07/2024.
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