Adaptação transcultural e propriedades psicométricas da versão brasileira do instrumento de qualidade de vida Autism Family Experience Questionnaire (AFEQ)
Conteúdo do artigo principal
Resumo
Introdução: O Autism Family Experience Questionnaire (AFEQ) busca mensurar a qualidade de vida por meio da experiência familiar de pais/cuidadores de crianças com transtorno do espectro autista em idade pré-escolar. Objetivo: Realizar a adaptação transcultural do AFEQ para a língua portuguesa do Brasil (B-AFEQ) e avaliar as propriedades psicométricas da versão brasileira produzida por meio da análise das evidências preliminares de confiabilidade e validade. Métodos: Foi realizada adaptação transcultural e avaliação das propriedades psicométricas através do alfa de Cronbach, confiabilidade teste-reteste, análise fatorial exploratória, análise fatorial confirmatória e modelagem das equações estruturais. A amostra foi composta por 102 participantes, dos quais 17 responderam uma segunda vez para a análise de confiabilidade teste-reteste. Resultados: O escore total do B-AFEQ demonstrou aceitável consistência interna (>0,70-0,90). A confiabilidade teste-reteste foi excelente (>0,80). Na EFA (exploratory factor analysis) os pré-requisitos foram alcançados (KMO=0,72; teste de esfericidade de Barlett significativo [p<0,001]). Na CFA (confirmatory factor analysis), os índices de adequação do ajuste foram X2 (gl)=1908 (1074), CFI =0,54, TLI =0,52 e RMSEA (IC95%) =0,08 (0,08-0,09). Na SEM (structural equation modeling) os índices de qualidade de ajuste foram X2 (gl)=1684 (1074), CFI =0,85, TLI =0,84 e RMSEA (IC95%) =0,07 (0,06-0,08). Conclusão: A adaptação transcultural do AFEQ foi satisfatória e foi comprovada a dimensionalidade do instrumento com aceitável ajuste de modelo. O B-AFEQ demonstrou ser válido e confiável para mensurar a qualidade de vida dos pais de crianças com Transtorno do Espectro Autista de 2 até 5 anos de idade e família.
Downloads
Detalhes do artigo
Este trabalho está licenciado sob uma licença Creative Commons Attribution 4.0 International License.
Autores que publicam nesta revista concordam com os seguintes termos:
- Autores mantém os direitos autorais e concedem à revista o direito de primeira publicação, com o trabalho simultaneamente licenciado sob uma licença Creative Commons CC BY que permite o compartilhamento e adaptação do trabalho com reconhecimento da autoria e publicação inicial nesta revista.
- Autores têm autorização para assumir contratos adicionais separadamente, para distribuição não-exclusiva da versão do trabalho publicada nesta revista (ex.: publicar em repositório institucional ou como capítulo de livro), com reconhecimento de autoria e publicação inicial nesta revista.
Referências
1. World Health Organization (WHO). International Statistical Classification of Diseases and Related Health Problems for Mortality and Morbidity Statistics. Revision 11th. Geneva: WHO, 2024.
2. Baio J, Wiggins L, Christensen DL, Maenner MJ, Daniels J, Warren Z, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ. 2018;67(6):1-23. http://dx.doi.org/10.15585/mmwr.ss6706a1
3. Maenner MJ, Warren Z, Williams AR, Amoakohene E, Bakian AV, Bilder DA, et al. Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years - Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ. 2023;72(2):1-14. https://doi.org/10.15585/mmwr.ss7202a1
4. Lord C, Brugha TS, Charman T, Cusack J, Dumas G, Frazier T, et al. Autism spectrum disorder. Nat Rev Dis Primers. 2020;6(1):5. https://doi.org/10.1038/s41572-019-0138-4
5. Ozgur B, Aksu H, Eser E. Factors affecting quality of life of caregivers of children diagnosed with autism spectrum disorder. Indian J Psychiatry. 2018;60(3):278-85. https://doi.org/10.4103/psychiatry.IndianJPsychiatry_300_17
6. Vohra R, Madhavan S, Sambamoorthi U, St Peter C. Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions. Autism. 2014;18(7):815-26. https://doi.org/10.1177/1362361313512902
7. Vries M, Geurts H. Influence of Autism Traits and Executive Functioning on Quality of Life in Children with an Autism Spectrum Disorder. J Autism Dev Disord. 2015;45(9):2734-43. https://doi.org/10.1007/s10803-015-2438-1
8. Johnson N, Frenn M, Feetham S, Simpson P. Autism spectrum disorder: parenting stress, family functioning and health-related quality of life. Fam Syst Health. 2011;29(3):232-52. https://doi.org/10.1037/a0025341
9. Karst JS, Hecke AVV. Parent and Family Impact of Autism Spectrum Disorders: A Review and Proposed Model for Intervention Evaluation. Clin Child Fam Psychol Rev. 2012;15(3):247-77. https://doi.org/10.1007/s10567-012-0119-6
10. Picardi A, Gigantesco A, Tarolla E, Stoppioni V, Cerbo R, Cremonte M, et al. Parental Burden and Its Correlates in Families of Children with Autism Spectrum Disorder: A Multicentre Study with Two Comparison Groups. Clin Pract Epidemiol Ment Health. 2018;14:143-76. https://doi.org/10.2174/1745017901814010143
11. Faker K, Tostes MA, Paula VAC. Impact of untreated dental caries on oral health-related quality of life of children with special health care needs. Braz Oral Res. 2019;32:e117. https://doi.org/10.1590/1807-3107BOR-2018.vol32.0117
12. Faker K, Tostes MA, Paula VAC. Oral health-related quality of life among autistic children compared to children without autism in Brazil. Int J Clin Dentistry. 2022;15(1):27-37.
13. Kodak T, Bergmann S. Autism Spectrum Disorder: Characteristics, Associated Behaviors, and Early Intervention. Pediatr Clin North Am. 2020;67(3):525-35. https://doi.org/10.1016/j.pcl.2020.02.007
14. The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403-9. https://doi.org/10.1016/0277-9536(95)00112-k
15. Tesch FC, Oliveira BH, Leão A. Equivalência semântica da versão em português do instrumento Early Childhood Oral Health Impact Scale. Cad Saude Publica. 2008;24(8):1897-909. https://doi.org/10.1590/S0102-311X2008000800018
16. Eapen V, Crnčec R, Walter A, Tay KP. Conceptualization and development of a quality of life measure for parents of children with autism spectrum disorder. Autism Res Treat. 2014;2014:160783. https://doi.org/10.1155/2014/160783
17. McConachie H, Mason D, Parr JR, Garland D, Wilson C, Rodgers J. Enhancing the Validity of a Quality of Life Measure for Autistic People. J Autism Dev Disord. 2018;48(5):1596-611. https://doi.org/10.1007/s10803-017-3402-z
18. Leadbitter K, Aldred C, McConachie H, Couteur AL, Kapadia D, Charman T, et al. The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention. J Autism Dev Disord. 2018;48(4):1052-62. https://doi.org/10.1007/s10803-017-3350-7
19. Barbosa IG, Rodrigues DH, Rocha NP, Simões-e-Silva AC, Teixeira AL, Kummer A. Propriedades psicométricas da Escala de Responsividade Social-2 para Transtornos do Espectro Autista. J Bras Psiquiatr. 2015;64(3):230-7. https://doi.org/10.1590/0047-2085000000083
20. Galdino MP, Pegoraro LFL, Saad LO, Grodberg D, Celeri EHRV. Evidence of Validity of the Autism Mental Status Examination (AMSE) in a Brazilian Sample. J Autism Dev Disord. 2018;50(7):2320-5. https://doi.org/10.1007/s10803-018-3530-0
21. Pacífico MC, Paula CS, Namur VS, Lowenthal R, Bosa CA, Teixeira MCTV. Preliminary evidence of the validity process of the Autism Diagnostic Observation Schedule (ADOS): translation, cross-cultural adaptation and semantic equivalence of the Brazilian Portuguese version. Trends Psychiatry Psychother. 2019;41(3):218-26. https://doi.org/10.1590/2237-6089-2018-0063
22. 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. https://doi.org/10.1016/0895-4356(93)90142-n
23. Herdman M, Fox-Rushby J, Badia X. 'Equivalence' and the translation and adaptation of health-related quality of life questionnaires. Qual Life Res. 1997;6(3):237-47. https://doi.org/10.1023/a:1026410721664
24. Firmino RT, Granville-Garcia AF, McGrath CP, Bendo CB, Ferreira FM, Paiva SM. Validation for the Brazilian Portuguese language of the Hong Kong Oral Health Literacy Assessment Task for Paediatric Dentistry (BOHLAT-P). Int J Paediatr Dent. 2020;30(2):234-43. https://doi.org/10.1111/ipd.12585
25. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Qual Life Res. 2010;19(4):539-49. https://doi.org/10.1007/s11136-010-9606-8
26. Anthoine E, Moret L, Regnault A, Sébille V, Hardouin JB. Sample size used to validate a scale: a review of publications on newly developed patient-reported outcomes measures. Health Qual Life Outcomes. 2014;12:176. https://doi.org/10.1186/s12955-014-0176-2
27. Nunnally JC, Bernstein IH. Psychometric Theory. Edition 2. New York: McGraw-Hill, 1978.
28. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16(3):297-334. https://doi.org/10.1007/BF02310555
29. Li L, Zeng L, Lin ZJ, Cazzell M, Liu H. Tutorial on use of intraclass correlation coefficients for assessing intertest reliability and its application in functional near-infrared spectroscopy-based brain imaging. J Biomed Opt. 2015;20(5):050801-13. https://doi.org/10.1117/1.JBO.20.5.050801
30. Hu L, Bentler PM. Cutoff Criteria for Fit Indexes in Covariance Structure Analysis: Conventional Criteria versus New Alternatives. Structural Equation Modeling. 1999;6(1):1-55. https://doi.org/10.1080/10705519909540118
31. Bagozzi RP, Yi Y, Phillips LW. Assessing Construct Validity in Organizational Research. Administrative Sci Quart. 1991;36(3):421. https://doi.org/10.2307/2393203
32. Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, et al. The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol. 2010;63(7):737-45. https://doi.org/10.1016/j.jclinepi.2010.02.006
33. Souza AC, Alexandre NMC, Guirardello EB, Souza AC, Alexandre NMC, Guirardello EB. Psychometric properties in instruments evaluation of reliability and validity. Epidemiol Serv Saude 2017;26(3):649-59. https://doi.org/10.5123/S1679-49742017000300022
34. Eyuboglu D, Eyuboglu M, Yaylaci F, Guller B, Sahbudak B, Avunduk A, et al. The Validity and Reliability of the Turkish Version of the Autism Family Experience Questionnaire (AFEQ). J Autism Dev Disord. 2025;55(3):1112-1121. https://doi.org/10.1007/s10803-024-06264-y
35. Eapen V, Karlov L, John JR, Beneytez C, Grimes PZ, Kang YQ, et al. Quality of life in parents of autistic children: A transcultural perspective. Front Psychol. 2023;14:1022094. https://doi.org/10.3389/fpsyg.2023.1022094
36. Faker K, Paula VAC, Tostes MA. Psychometric Properties of the Portuguese Version of the Quality of Life in Autism Questionnaire (QoLA). J Autism Dev Disord. 2024. https://doi.org/10.1007/s10803-024-06428-w