Métodos de avaliação da qualidade de vida de pacientes com Síndrome de Apert e de Crouzon
DOI:
https://doi.org/10.11606/issn.2176-7262.rmrp.2025.216437Palavras-chave:
Apert, Crouzon, Impacto da doença, Qualidade de vidaResumo
Introdução: A Craniossinostose Coronal bilateral implica em diminuição do Perímetro Craniano no eixo anteroposterior (Braquicefalia) e frequentemente se associa a aumento do eixo céfalo-caudal do crânio (Turricefalia); muito comuns nas Síndromes de Apert e Crouzon. Objetivo: Identificar, analisar e sintetizar os métodos de avaliação de Qualidade de Vida (QV) em pacientes com cranioestenoses sindrômicas, em particular as síndromes de Apert e de Crouzon. Método: Trata-se de uma revisão de escopo. Para a formulação da pergunta norteadora da pesquisa e estratégia de busca, foi utilizada a estratégia Population [((Apert OR Crouzon) AND (Disease OR Syndrome*))], Concept [(Sickness Impact Profile" OR "Impact of Disease on Quality of Life" OR "Level of Living Measures" OR "Quality of Life" OR "Life Quality of Life" OR "Life Quality")] e Context (em qualquer contexto). Foram incluídos artigos em inglês, português e espanhol, em qualquer período. A busca foi realizada nas bases de dados: PubMed/MEDLINE, Scopus, Embase e Rede BVS Saúde. Resultados: Os resultados dos estudos desta revisão mostram que os pacientes quando realizaram uma autoavaliação de QV, relataram uma QV satisfatória, exceto no item relacionado à vida social. Aqueles que tiveram acesso a tratamento precoce com equipe multidisciplinar apresentaram melhor autoavaliação de QV que aqueles que não tiveram o acesso. Os resultados desta revisão mostraram que a avaliação de QV nos casos de Apert e Crouzon é pior quando sob o ponto de vista dos pais que quando sob a ótica dos pacientes, provavelmente devido à limitação cognitiva interferindo na percepção. Os resultados revelaram que existem vários métodos de avaliação de QV validados internacionalmente e que o instrumento de avaliação da OMS, WHOQOL, atualmente é o mais utilizado por possibilitar visão holística da saúde, por sua adaptabilidade transcultural e por permitir pesquisas multicêntricas sob a mesma padronização. Considerações Finais: A presente Revisão de Escopo mostrou que o tema vem sendo mais explorado na última década, principalmente devido à iniciativa da OMS em ampliar o foco na mensuração da saúde para além dos indicadores tradicionais como mortalidade e morbidade. Mais pesquisas sobre QV nas anomalias craniofaciais são indispensáveis no aprofundamento das análises preditiva e correlativa das Síndromes de Apert e Crouzon, tornando possível melhor abordagem das capacidades funcionais, necessidades e QV destes pacientes, assim como servirão de embasamento para criação de políticas públicas de saúde que promovam programas de reabilitação específicos e planejados focados na QV destes, principalmente nos países em desenvolvimento.
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1- Lovalho A, Barreto A de F, Astolfi GHB, Mazzo A, Fernandes AY. Métodos de avaliação cognitiva de pacientes com Síndrome de Apert e de Crouzon. Medicina (Ribeirão Preto) [Internet]. 2023 Apr 14 [cited 2023 Apr 30];56(1):e–203361. Available from: https://www.revistas.usp.br/rmrp/article/view/203361
2- James C. Wang, Laszlo Nagy, Joshua C. Demke. Syndromic Craniosynostosis, Facial Plastic Surgery Clinics of North America [Internet]. 2016 Nov 1 [cited 2022 May 8]; Plastic Surgery:[about 12 pages]. Available from:https://doi.org/10.1016/j.fsc.2016.06.008
3- Hilton C. An Exploration of the Cognitive, Physical and Psychosocial Development of Children with Apert Syndrome. International Journal of Disability, Development and Education. 2016 Jun 7;64(2):198–210.
4- Tolarova, M.M., Harris, J.A., Ordway, D.E., Vargervik, K. Birth prevalence, mutation rate, sex ratio, parents' age, and ethnicity in Apert syndrome. American Journal of Medical Genetics [Internet]. 1998 Dec 6. Clinical genetics. Available: https://onlinelibrary.wiley.com/doi/epdf/10.1002/%28SICI%291096-8628%2819971112%2972%3A4%3C394%3A%3AAID-AJMG4%3E3.0.CO%3B2-R
5- Wenger T, Miller D, Evans K. FGFR Craniosynostosis Syndromes Overview [Internet]. Adam MP, Everman DB, Mirzaa GM, Pagon RA, Wallace SE, Bean LJ, et al., editors. PubMed. Seattle (WA): University of Washington, Seattle; 1993 [cited 2022 Sep 9]. Available from: https://pubmed.ncbi.nlm.nih.gov/20301628/
6- Patton MA, Goodship J, Hayward R, Lansdown R. Intellectual development in Apert’s syndrome: a long-term follow-up of 29 patients. Journal of Medical Genetics. 1988 Mar 1;25(3):164–167.
7- Maliepaard M, Mathijssen IMJ, Oosterlaan J, Okkerse JME. Intellectual, Behavioral, and Emotional Functioning in Children with Syndromic Craniosynostosis. PEDIATRICS. 2014 May 26; 133(6): 1608–15.
8- Shipster C, Hearst D, Dockrell JE, Kilby E, Hayward R. Speech and language skills and cognitive functioning in children with Apert syndrome: a pilot study. International Journal of Language & Communication Disorders. 2002 Jan; 37(3): 325–43.
9- Yacubian-Fernandes A, Palhares A, Giglio A, Gabarra RC, Zanini S, Portela L, et al. Apert syndrome: factors involved in the cognitive development. Arquivos de Neuro-Psiquiatria [Internet]. 2005 Dec [cited 2019 May 7];63(4):963–8. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-282X2005000600011
10- Yacubian-Fernandes A. Desenvolvimento cognitivo de pacientes com síndrome de Apert e síndrome de Crouzon: modelo multidisciplinar de avaliação. repositoriouspbr [Internet]. 2009 [cited 2022 Aug 31]; Available from: https://repositorio.usp.br/item/001790844
11- Fernandes MBL, Maximino LP, Perosa GB, Abramides DVM, Passos-Bueno MR, Yacubian-Fernandes A. Apert and Crouzon Syndromes-Cognitive development, brain abnormalities, and molecular aspects. American Journal of Medical Genetics Part A. 2016 Mar 30;170(6):1532–7.
12- Cohen SR, Persing JA. Intracranial Pressure in Single-Suture Craniosynostosis. The Cleft Palate-Craniofacial Journal. 1998 May;35(3):194–6.
13- Campis LB. Children with Apert Syndrome: Developmental and Psychologic Considerations. Clinics in Plastic Surgery. 1991 Apr;18(2):409–16.
14- Renier D, Arnaud E, Cinalli G, Sebag G, Zerah M, Marchac D. Prognosis for mental function in Apert’s syndrome. Journal of Neurosurgery [Internet]. 1996 Jul [cited 2019 Dec 2];85(1):66–72. Available from: https://thejns.org/view/journals/j-neurosurg/85/1/article-p66.xml
15- Maximino LP, Ducati LG, Abramides DVM, Corrêa C de C, Garcia PF, Fernandes AY. Syndromic craniosynostosis: neuropsycholinguistic abilities and imaging analysis of the central nervous system. Arquivos De Neuro-Psiquiatria [Internet]. 2017 Dec 1 [cited 2022 Aug 30];75(12):862–8. Available from: https://pubmed.ncbi.nlm.nih.gov/29236889/
16- Paternoster G, Dahiez X, Andre K, Pamphile-Tabuteau L, Angeard N, Khonsari H, et al. SYM9.9C Cognitive Assessment in School Age Crouzon and Pfeifer after early Fronto-facial Monobloc. Plastic and Reconstructive Surgery - Global Open. 2019 Aug;7:7–8.
17- Flapper WJ, Anderson PJ, Roberts RM, David DJ. Intellectual Outcomes Following Protocol Management in Crouzon, Pfeiffer, and Muenke Syndromes. Journal of Craniofacial Surgery. 2009 Jul;20(4):1252–5.
18- Ciasca SM, Araujo AP, Simão AN de P, Capellini SA, Chiaratti PS, Camargo EE, et al. Neuropsychological and phonological evaluation in the Apert’s syndrome: study of two cases. Arquivos de Neuro-Psiquiatria. 2001 Jun;59(2B):342–6.
19- Hilton C. Fingers Matter: The Development of Strategies for Solving Arithmetic Problems in Children with Apert Syndrome. Frontiers in Education. 2019 Nov 26;4.
20- Hughes RW, Hurlstone MJ, Marsh JE, Vachon F, Jones DM. Cognitive control of auditory distraction: Impact of task difficulty, foreknowledge, and working memory capacity supports duplex-mechanism account. Journal of Experimental Psychology: Human Perception and Performance. 2013;39(2):539–53.
21 WNV - Escala Wechsler Não Verbal de Inteligência. Plataforma Pearson Clinical Brasil [Internet]. São Paulo: PCB. c2016 [cited 2022 may 15]. Available from: https://www.pearsonclinical.com.br/escala-wechsler-n-o-verbal-de-inteligencia-wnv.html
22- Aguado AM, Lobo-Rodríguez B, Blanco-Menéndez R, Alvarez-Carriles JC, Vera de la Puente E. [Neuropsychological implications of Crouzon syndrome: a case report]. Revista De Neurologia [Internet]. 1999 Dec 1 [cited 2022 Aug 31];29(11):1040–4. Available from: https://pubmed.ncbi.nlm.nih.gov/10637868/
23- Yacubian-Fernandes A, Ducati LG, Silva MV, Abramides DVM, Perosa GB, Palhares A, et al. Síndrome de Crouzon: fatores envolvidos no desenvolvimento neuropsicológico e na qualidade de vida. Arquivos de Neuro-Psiquiatria [Internet]. 2007 Jun 1 [cited 2022 Jun 7];65:467–71. Available from: https://www.scielo.br/j/anp/a/6CKsYwdVrkGnmkkjJWs6hJw/?lang=pt
24- Belfer ML. Body Image and the Process of Reconstructive Surgery. Archives of Pediatrics & Adolescent Medicine. 1979 May 1;133(5):532.
25- Zanfelici TO, Aiello ALR, Carli AAT de. Adaptação Transcultural do Questionário de Recursos e Estresse (QRS-F) para Familiares Cuidadores. Pensando familias [Internet]. 2016 Jul 1 [cited 2022 Sep 17];20(1):142–57. Available: http://pepsic.bvsalud.org/scielo.php?script=sci_arttext&pid=S1679-494X2016000100011
26- World Health Organization. WHOQOL - measuring quality of life| the world health organization [Internet]. World Health Organization. 2012. Available: https://www.who.int/tools/whoqol
27- De Jong T, Maliepaard M, Bannink N, Raat H, Mathijssen IMJ. Health-related problems and quality of life in patients with syndromic and complex craniosynostosis. Child’s Nervous System. 2012 Jan 11;28(6):879–82.
28- Sakamoto Y, Takenouchi T, Miwa T, Kishi K. Assessment of long-term quality of life in patients with syndromic craniosynostosis. Journal of Plastic, Reconstructive & Aesthetic Surgery. 2021 Feb;74(2):336–40.
29- The World Health Organization instrument to evaluate quality of life (WHOQOL-100): characteristics and perspectives - ProQuest [Internet]. www.proquest.com. [cited 2023 Apr 30]. Available from: https://www.proquest.com/openview/0b6be4effee3b220d03d1bf887657417/1?pq-origsite=gscholar&cbl=2034998
30- Fleck MP, Louzada S, Xavier M, Chachamovich E, Vieira G, Santos L, et al. Aplicação da versão em português do instrumento abreviado de avaliação da qualidade de vida “WHOQOL-bref.” Revista de Saúde Pública. 2000 Apr;34(2):178–83.
31- Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A Report from the WHOQOL Group. Quality of Life Research. 2004 Mar;13(2):299–310.
32- THE WHOQOL GROUP. Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment. Psychological Medicine. 1998 May;28(3):551–8.
33- Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun H, Levac D, et al. PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Annals of Internal Medicine [Internet]. 2018 Sep 4;169(7):467. Available from: https://www.acpjournals.org/doi/10.7326/M18-0850
34- Peters MDJ, Godfrey CM, McInerney P, Soares CB, Khalil H, Parker D. The Joanna Briggs Institute reviewers' manual 2015: methodology for JBI scoping reviews [Internet]. 2015 ;[citado 2022 ago. 25 ] Available from: http://joannabriggs.org/assets/docs/sumari/Reviewers-Manual_Methodology-for-JBI-Scoping-Reviews_2015_v2.pdf
35- Uppar AM, Shukla D, Nayak N, Rao G, Dwarakanath S. Syndromic Craniosynostosis: Objective and Parent-Reported Outcome Measurements after Cranio-Facial Remodelling Surgeries. Pediatric Neurosurgery. 2021 Nov 8;1–11. Avaiable from: https://karger.com/pne/article-abstract/57/1/17/826481/Syndromic-Craniosynostosis-Objective-and-Parent?redirectedFrom=fulltext
36- Kamran R, Longmire NM, Rae C, Karen, Forrest CB, O’Hara J, et al. Concepts Important to Patients with Facial Differences: A Qualitative Study Informing a New Module of the FACE-Q for Children and Young Adults. The Cleft Palate-Craniofacial Journal. 2021 Aug 1;58(8):1020–31. Avaiable from: https://journals.sagepub.com/doi/10.1177/1055665620969589
37- Achterrath S, Kruse T, Neuschulz J, Graf I, Zöller J, Braumann B. Reducing the Burden of Care: Multidisciplinary Management of Late-Manifested Crouzon Syndrome—A Case Report. Children. 2021 Dec 3;8(12):1122. Avaiable from: https://pubmed.ncbi.nlm.nih.gov/34943318/
38- Netherton J, Horton J, Stock NM, Shaw R, Noons P, Evans MJ. Psychological Adjustment in Apert Syndrome: Parent and Young Person Perspectives. The Cleft Palate-Craniofacial Journal. 2021 Dec 30;105566562110698. Avaiable from: https://pubmed.ncbi.nlm.nih.gov/34967688/
39 - Kelly K, Cummins S, Xie D, Virgin FW. Sinus disease in Apert’s syndrome: Durable quality of life improvement following surgical intervention. Otolaryngology Case Reports. 2021 Mar;18:100256. Avaiable from: https://www.sciencedirect.com/science/article/pii/S2468548820301004?via%3Dihub
40- Taghinia AH, Yorlets RR, Doyle M, Labow BI, Upton J. Long-Term Functional Upper-Extremity Outcomes in Adults with Apert Syndrome. Plastic and Reconstructive Surgery [Internet]. 2019 Apr 1 [cited 2023 May 2];143(4):1136–45. Available from: https://pubmed.ncbi.nlm.nih.gov/30676503/
41- Visram SM, Gill D, Shute JT, Cunningham SJ. Qualitative study to identify issues affecting quality of life in adults with craniofacial anomalies. British Journal of Oral and Maxillofacial Surgery. 2019 Jan;57(1):47–52. Avaiable from: https://pubmed.ncbi.nlm.nih.gov/30527861/
42- Kana MA, Baduku TS, Bello-Manga H, Baduku AS. A 37-year-old Nigerian woman with Apert syndrome – medical and psychosocial perspectives: a case report. Journal of Medical Case Reports. 2018 May 13; 12(1). Avaiable from: https://pubmed.ncbi.nlm.nih.gov/29753329/
43- Wheeler KJ, Early JO. Using Photovoice to Explore Quality of Life Factors of Adults with Crouzon Syndrome. Qualitative Health Research. 2017 Dec 10;28(3):357–70. Avaiable from: https://journals.sagepub.com/doi/10.1177/1049732317742624
44- Lloyd MS, Venugopal A, Horton J, Rodrigues D, Nishikawa H, White N, et al. The Quality of Life in Adult Patients with Syndromic Craniosynostosis from Their Perspective. Journal of Craniofacial Surgery. 2016 Sep;27(6):1510–4. Avaiable from: https://journals.lww.com/jcraniofacialsurgery/Fulltext/2016/09000/The_Quality_of_Life_in_Adult_Patients_With.29.aspx
45- Singh VP, Moss TP. Psychological impact of visible differences in patients with congenital craniofacial anomalies. Progress in Orthodontics. 2015 Apr 18;16(1). Avaiable from: https://progressinorthodontics.springeropen.com/articles/10.1186/s40510-015-0078-9
46- Fischer S, Tovetjärn R, Maltese G, Sahlin PE, Tarnow P, Kölby L. Psychosocial conditions in adults with Crouzon syndrome: a follow-up study of 31 Swedish patients. Journal of Plastic Surgery and Hand Surgery. 2013 Dec 16;48(4):244–7. Avaiable from: https://www.tandfonline.com/doi/full/10.3109/2000656X.2013.868811?scroll=top&needAccess=true&role=tab&aria-labelledby=full-article
47- Castro-Silva II, Nascimento LA, Coutinho LAC, Costa DOP. Criança com Síndrome de Apert: diagnóstico clínico-radiográfico, manifestações orofaciais e qualidade de vida. ROBRAC [Internet]. 2014 [cited 2023 May 2]; Available from: https://pesquisa.bvsalud.org/portal/resource/pt/lil-763966
48- Dover S, Lloyd M, Venugopal A, Horton J, Rodrigues D, Nishikawa H, et al. Adult syndromic craniosynostosis - a quality of life (QoL) outcome study. British Journal of Oral and Maxillofacial Surgery [Internet]. 2014 Oct 1 [cited 2023 May 2];52(8):e43–4. Available from: https://www.sciencedirect.com/science/article/pii/S026643561400271X?via%3Dihub
49- Raposo-Amaral CE, Neto JGJ, Denadai R, Raposo-Amaral CM, Raposo-Amaral CA. Patient-Reported Quality of Life in Highest-Functioning Apert and Crouzon Syndromes. Plastic and Reconstructive Surgery. 2014 Feb;133(2):182e191e. Avaiable from: https://journals.lww.com/plasreconsurg/Fulltext/2014/02000/Patient_Reported_Quality_of_Life_in.29.aspx
50- Raposo-Amaral CE, Raposo-Amaral CA, Neto JJG, Farias DB, Somensi RS. Apert Syndrome. Journal of Craniofacial Surgery. 2012 Jul;23(4):1104–8. Avaiable from: https://journals.lww.com/jcraniofacialsurgery/Fulltext/2012/07000/Apert_Syndrome__Quality_of_Life_and_Challenges_of.37.aspx
51- Tovetjärn R, Tarnow P, Maltese G, Fischer S, Sahlin PE, Kölby L. Children with Apert Syndrome as Adults. Plastic & Reconstructive Surgery. 2012 Oct;130(4):572e576e. Avaiable from: https://journals.lww.com/plasreconsurg/Fulltext/2012/10000/Children_with_Apert_Syndrome_as_Adults__A.28.aspx
52- Stavroupoulos D, Hallberg U, Mohlin B, Hagberg C. Living with Crouzon syndrome: how do young adults with Crouzon syndrome handle their life situation? International Journal of Paediatric Dentistry. 2010 Dec 6;21(1):35–42. Avaiable from: https://onlinelibrary.wiley.com/doi/10.1111/j.1365-263X.2010.01079.x
53- Allam KA, Wan DC, Khwanngern K, Kawamoto HK, Tanna N, Perry A, et al. Treatment of apert syndrome: a long-term follow-up study. Plastic and Reconstructive Surgery [Internet]. 2011 Apr 1 [cited 2022 Mar 10];127(4):1601–11. Available from: https://pubmed.ncbi.nlm.nih.gov/21187805/
54- Bannink N, Maliepaard M, Raat H, Joosten KFM, Mathijssen IMJ. Obstructive Sleep Apnea-Specific Quality of Life and Behavioral Problems in Children with Syndromic Craniosynostosis. Journal of Developmental & Behavioral Pediatrics. 2011 Apr;32(3):233–8. Avaiable from: https://journals.lww.com/jrnldbp/Fulltext/2011/04000/Obstructive_Sleep_Apnea_Specific_Quality_of_Life.9.aspx
55- Randhawa PS, Ahmed J, Nouraei SR, Wyatt ME. Impact of Long-term Nasopharyngeal Airway on Health-Related Quality of Life of Children with Obstructive Sleep Apnea Caused by Syndromic Craniosynostosis. Journal of Craniofacial Surgery. 2011 Jan;22(1):125–8. Avaiable from: https://journals.lww.com/jcraniofacialsurgery/Fulltext/2011/01000/Impact_of_Long_term_Nasopharyngeal_Airway_on.27.aspx
56- Bannink N, Maliepaard M, Raat H, Joosten KFM, Mathijssen IMJ. Health-related quality of life in children and adolescents with syndromic craniosynostosis. Journal of Plastic, Reconstructive & Aesthetic Surgery. 2010 Dec;63(12):1972–81. Avaiable from: https://www.sciencedirect.com/science/article/pii/S1748681510000719?via%3Dihub
57- Warschausky S, Kay JB, Buchman S, Halberg A, Berger M. Health-Related Quality of Life in Children with Craniofacial Anomalies. Plastic and Reconstructive Surgery [Internet]. 2002 Aug 1 [cited 2023 May 3];110(2):409. Available from: https://journals.lww.com/plasreconsurg/Abstract/2002/08000/Health_Related_Quality_of_Life_in_Children_with.4.aspx
58- Arndt EM, Travis F, Lefebvre A, Niec A, Munro IR. Beauty and the eye of the beholder: social consequences and personal adjustments for facial patients. British Journal of Plastic Surgery. 1986 Jan;39(1):81–4. Avaiable from: https://www.sciencedirect.com/science/article/pii/0007122686900093?via%3Dihub
59- Lefebvre A, Barclay S. Psychosocial Impact of Craniofacial Deformities Before and after Reconstructive Surgery. The Canadian Journal of Psychiatry. 1982 Nov 1; Avaiable from: https://journals.sagepub.com/doi/10.1177/070674378202700712
60- Nexxto R. PREMs e PROMs: medindo a experiência relatada pelo paciente [Internet]. Nexxto. 2021 [cited 2023 May 6]. Available from: https://nexxto.com/prems-e-proms-medindo-a-experiencia-relatada-pelo-paciente/
61- Portuguese_Brazil_WHOQOL-BREF [Internet]. www.who.int. Available from: https://www.who.int/tools/whoqol/whoqol-bref/docs/default-source/publishing-policies/whoqol-bref/portuguese-brazil-whoqol-bref
62- WHO Disability Assessment Schedule (WHODAS 2.0) [Internet]. www.who.int. Available from: https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health/who-disability-assessment-schedule
63- Martins LGT, Parma GOC, Cristiano D, Possamai CF, Sônego FGF, Traebert J. Cross-Cultural Adaptation and Validation of the COHIP-SF19 to be used in Brazil. Pesquisa Brasileira em Odontopediatria e Clínica Integrada. 2018;18(1):1–13. Avaible from: https://pdfs.semanticscholar.org/3c65/d4c0635d4b86b7539df17c93a71af57c46a6.pdf
64- Negrão CGC, Rufino LA, Souza AB de, Cymrot R, Blascovi-Assis SM. Normatização do teste de função Manual Jebsen-Taylor para população brasileira. Saúde e Pesquisa [Internet]. 2022 Jan 31 [cited 2023 Feb 18];15(1):1–11. Available from: https://periodicos.unicesumar.edu.br/index.php/saudpesq/article/view/7863/6943
65- The Patient Health Questionnaire (PHQ-9) -Overview [Internet]. Available from: https://coepes.nih.gov/sites/default/files/2020-12/PHQ-9%20depression%20scale.pdf
66- Fernandes CS, Carvalho JN, Feitosa E da S, Costa NP da, Moraes TMD, Rodrigues ARS, et al. Photovoice como método de pesquisa para educação em saúde: uma revisão integrativa. Revista Eletrônica de Enfermagem. 2019 Sep 20;21. Avaiable from: https://docs.bvsalud.org/biblioref/2020/09/1119131/51434-texto-do-artigo-263069-3-10-20200304.pdf
67- Mendes JC da S, Pereira V. Versão Portuguesa Reduzida da Escala de Avaliação da Aparência de Derriford (DAS-14): análise fatorial exploratória e confirmatória. Revista Portuguesa de Investigação Comportamental e Social. 2018 Oct 1;4(2):25–32. Avaiable from: https://www.researchgate.net/publication/299408852_Analise_Fatorial_da_Versao_Portuguesa_da_Escala_de_Avaliacao_da_Aparencia_de_Derriford_DAS-24
68- Vieira LC [UNIFESP. Tradução, adaptação cultural e validação de face e conteúdo do Psychosocial Impact of Dental Aesthetics Questionnaire para uso no Brasil. repositoriounifespbr [Internet]. 2010 Aug 25 [cited 2023 May 7]; Available from: https://repositorio.unifesp.br/handle/11600/10124
69- AUQEI - Questionário de avaliação de qualidade de vida em crianças e adolescentes [Internet]. www.psiquiatriainfantil.com.br. [cited 2023 May 7]. Available from: http://www.psiquiatriainfantil.com.br/escalas/auqei.htm
70- Horsman J, Furlong W, Feeny D, Torrance G. The Health Utilities Index (HUI®): concepts, measurement properties and applications. Health and Quality of Life Outcomes [Internet]. 2003;1(1):54. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC293474/
71- Huskisson EC. MEASUREMENT OF PAIN. The Lancet. 1974 Nov;304(7889):1127–31. Avaiable from: https://www.sciencedirect.com/science/article/pii/S0140673674908848?via%3Dihub
72- Leitão C. Capítulo 7 A entrevista como instrumento de pesquisa científica: planejamento, execução e análise [Internet]. Available from: https://metodologia.ceie-br.org/wp-content/uploads/2021/10/livro3-cap7-Entrevista.pdf
73- Bordin IA, Rocha MM, Paula CS, Teixeira MCTV, Achenbach TM, Rescorla LA, et al. Child Behavior Checklist (CBCL),Youth Self-Report (YSR) and Teacher’s Report Form (TRF): an overview of the development of the original and Brazilian versions. Cadernos de Saúde Pública [Internet]. 2013 Jan [cited 2019 May 5];29(1):13–28. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2013000100004
74- Santos Fernandes FMV, da Cruz Vieira Veloso Teles R. Application of the Portuguese version of the Obstructive Sleep Apnea-18 survey to children. Brazilian Journal of Otorhinolaryngology. 2013 Nov;79(6):720–6. Avaiable from: https://www.sciencedirect.com/science/article/pii/S1808869415302226?via%3Dihub
75- Kubba H, Swan IRC, Gatehouse S. The Glasgow Children’s Benefit Inventory: A New Instrument for Assessing Health-Related Benefit after an Intervention. Annals of Otology, Rhinology & Laryngology. 2004 Dec;113(12):980–6. Avaiable from: https://journals.sagepub.com/doi/10.1177/000348940411301208
76- Smyth M, Jacobson K. Pediatric Quality of Life InventoryTM version 4.0 short form generic core scale across pediatric populations review data. Data in Brief. 2021 Dec;39:107599. Avaiable from: https://www.sciencedirect.com/science/article/pii/S235234092100874X?via%3Dihub
77- Landgraf JM. Child Health Questionnaire (CHQ). Encyclopedia of Quality of Life and Well-Being Research [Internet]. 2014 [cited 2019 Nov 8];698–702. Available from: https://link.springer.com/referenceworkentry/10.1007/978-94-007-0753-5_324?view=modern
78- Laguardia J, Campos MR, Travassos C, Najar AL, Anjos LA dos, Vasconcellos MM. Brazilian normative data for the Short Form 36 questionnaire, version 2. Revista Brasileira de Epidemiologia [Internet]. 2013 Dec 1 [cited 2022 Feb 3];16:889–97. Available from: https://www.scielo.br/j/rbepid/a/jKQdkPHXVmGFvgLghfbrq4P/
79- HealthActCHQ | CHQ: Child Health QuestionnaireTM [Internet]. www.healthactchq.com. Available from: https://www.healthactchq.com/survey/chq
80- Likert Scale Explanation: Examples + Survey Template [Internet]. Surveyking.com. 2022. Available from: https://www.surveyking.com/help/likert-scale-explanation-example
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Direitos autorais (c) 2026 Adriana Lovalho, Augusto de Freitas Barreto, Gustavo Henrique Blumer Astolfi, Adriano Yacubian Fernandes, Luciana Paula Maximino
Este trabalho está licenciado sob uma licença Creative Commons Attribution 4.0 International License.
