Cross-cultural adaptation and psychometric properties of the Brazilian version of the Autism Family Experience Questionnaire (AFEQ) quality of life instrument
Main Article Content
Abstract
Introduction: The Autism Family Experience Questionnaire (AFEQ) aims to measure quality of life through the family experience of parents/caregivers of preschool-aged children with autism spectrum disorder. Objective: To carry out the cross-cultural adaptation of the AFEQ into Brazilian Portuguese (B-AFEQ) and to evaluate the psychometric properties of the Brazilian version produced by analyzing preliminary evidence of reliability and validity. Methods: Cross-cultural adaptation and assessment of psychometric properties were performed using Cronbach's alpha, test-retest reliability, exploratory factor analysis, confirmatory factor analysis, and structural equation modeling. The sample consisted of 102 participants, of whom 17 responded a second time for the test-retest reliability analysis. Results: The total B-AFEQ score demonstrated acceptable internal consistency (>0.70-0.90). Test-retest reliability was excellent (>0.80). In the exploratory factor analysis (EFA), the prerequisites were met (KMO=0.72; Bartlett's test of sphericity significant [p<0.001]). In the confirmatory factor analysis (CFA), the goodness-of-fit indices were X2 (df)=1908 (1074), CFI =0.54, TLI =0.52, and RMSEA (95% CI) =0.08 (0.08-0.09). In the structural equation modeling (SEM), the goodness-of-fit indices were X2 (df)=1684 (1074), CFI =0.85, TLI =0.84, and RMSEA (95% CI) =0.07 (0.06-0.08). Conclusion: The cross-cultural adaptation of the AFEQ was satisfactory, and the dimensionality of the instrument was proven with acceptable model fit. The B-AFEQ proved to be valid and reliable for measuring the quality of life of parents of children with Autism Spectrum Disorder aged 2 to 5 years and their families.
Downloads
Article Details
This work is licensed under a Creative Commons Attribution 4.0 International License.
Authors who publish with this journal agree to the following terms:
Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License (CC BY) that allows others to share and adapt the work with an acknowledgement of the work's authorship and initial publication in this journal.
Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.References
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