DISABKIDS<sup>®</sup> in Brazil: advances and future perspectives for the production of scientific knowledge

Romeiro, Viviane; Bullinger, Monika; Marziale, Maria Helena Palucci; Fegadolli, Claudia; Reis, Roberta Alvarenga; Silveira, Renata Cristina de Campos Pereira; Costa-Júnior, Moacyr Lobo da; Sousa, Fátima Aparecida Emm Faleiros; Andrade, Valéria Sousa de; Conacci, Beatriz Juliana; Nascimento, Fernanda Karla; Santos, Claudia Benedita dos

doi:10.1590/1518-8345.3003.3257

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Revista Latino-Americana de Enfermagem

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Review Article • Rev. Latino-Am. Enfermagem 28 • 2020 • https://doi.org/10.1590/1518-8345.3003.3257 copy

DISABKIDS^® in Brazil: advances and future perspectives for the production of scientific knowledge^* * Paper extracted from master´s thesis “DISABKIDS® in Brazil: advances and future perspectives in the production of scientific knowledge”, presented to Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto, PAHO/WHO Collaborating Centre for Nursing Research Development, Ribeirão Preto, SP, Brazil. Supported by Conselho Nacional de Desenvolvimento Científico e Tecnológico (CNPq), Grant # 130226/2017-3, Brazil.

Authorship SCIMAGO INSTITUTIONS RANKINGS

Objective:

to map the Brazilian scientific production related to the stages of the methodological process for the use of DISABKIDS^® instruments and/or forms adapted to Brazil.

Method:

scoping review, with searches conducted on10 electronic databases, plus Google Scholar and contacts with researchers, without restriction of period or language.

Results:

the mapping identified 90 scientific studies involving 46 instruments. Of these, 11 (23.9%) included the elaboration and/or cultural adaptation of the DISABKIDS^® instruments to measure the Quality of Life of children or adolescents with chronic conditions and 35 (76.1%) used the Generic Measures and/or Specific Modules for the semantic validation of other instruments.

Conclusion:

this scoping review allowed a comprehensive evaluation of the use of the DISABKIDS^® instrument and forms, in relation to the validation of the instrument adapted to Brazil, presenting a positive advance in the scenario with the development of academic/scientific projects in the country, incorporating the method recommended by the literature for the elaboration, cultural adaptation and validation of instruments and for the systematized and standardized recording of the perception and understanding of the target population about the measure of interest, using DISABKIDS^® forms adapted for this purpose.

Descriptors:
Cross-Cultural Comparison; Validation Studies as Topic; Surveys and Questionnaires; Psychometrics; Quality of Life; Review

"Mother" Project	Instrument	Category
1	DISABKIDS^® Chronic Generic Measure	Livre Docência⁽²⁵25 Santos CB. Processo de adaptação transcultural e validação de instrumentos de qualidade de vida para crianças e adolescentes com condições crônicas desenvolvidos pelo grupo DISABKIDS [Livre Docência]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2007.⁾; thesis⁽²⁶26 Fegadolli C. Transcultural adaptation and validation of instrument DISABKIDS-37 for Brazilian children and adolescents with chronic conditions: phase I [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2008. doi:10.11606/T.22.2008.tde-17032009-161916 https://doi.org/10.11606/T.22.2008.tde-1... ⁾; article⁽¹⁴14 Fegadolli C, Reis RA, Martins STA, Bullinger M, Santos CB. Adaptation of the generic DISABKIDS® module for Brazilian children and adolescents with chronic disorders. Rev Bras Saúde Matern Infant. 2010;10(1):95-105. doi: http://dx.doi.org/10.1590/S1519-38292010000100010 http://dx.doi.org/10.1590/S1519-38292010... ⁾
2		Thesis⁽²⁷27 Nunes SPH. Validation of the DISABKIDS®-37 instrument for Brazilian children and adolescents with chronic conditions [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014. doi:10.11606/T.22.2014.tde-30032015-185317 https://doi.org/10.11606/T.22.2014.tde-3... ⁾; congress⁽²⁸28 Nunes SPH, Silva JK., Anjos FM, Fegadolli C, Bullinger M, dos Santos CB. The DISABKIDS®-37 questionnaire for Brazilian children and adolescents with chronic conditions showed cross-cultural Brazilian regions validity. In: 22TH International Society for Quality of Life Research (ISOQOL). Vancouver, Canada; 2015. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-015-1078-4 https://link.springer.com/article/10.100... ^-²⁹29 Fegadolli C, Nunes SPH, Reis RA, Silva JK, Anjos FM, Bullinger M, et al. Validation of the DISABKIDS®-37 questionnaire for Brazilian children and adolescents with chronic conditions. In: 23th International Society For Quality Of Life Research (ISOQOL). Copenhagen, Denmark; 2016. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-016-1390-7 https://link.springer.com/article/10.100... ⁾
3		Dissertation⁽³⁰30 Monteiro SNC. Quality of Life: perceptions of ostomy children and adolescents and their parents and/or guardians [dissertação]. Brasília: Universidade de Brasília; 2013. Available from: http://repositorio.unb.br/handle/10482/15346 http://repositorio.unb.br/handle/10482/1... ⁾; congress⁽³¹31 Monteiro, SNC, Melo MC, Santos JS, Kamada I . Percepção de criança e adolescente estomizados acerca da autonomia do cuidado. In: XI Congresso Brasileiro de Estomaterapia. 2015. [cited Oct 3, 2019]. Available from: http://sobest.org.br/arquivos/CBEAULAS/dia2/13H30%20-%20SANDRA%20NAZARE%20-%207.pdf http://sobest.org.br/arquivos/CBEAULAS/d... ⁾
4	DISABKIDS^® Module - Living with Hearing Impairment	Thesis⁽³²32 Reis RA. Specific Module of the Health-Related Quality of Life Assessment for Children and Adolescents Living with Hearing Impairment - ViDA [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2009. doi:10.11606/T.22.2009.tde-19022009-140912 https://doi.org/10.11606/T.22.2009.tde-1... ⁾
5	DISABKIDS^® - Cerebral Palsy	SI^* * SI = Scientific Initiation; ∕Final paper⁽³³33 Toller G. Tradução e adaptação cultural do módulo específico paralisia cerebral do DISABKIDS Cerebral Palsy Module® (DISABKIDS - CPM®) para crianças e adolescentes brasileiros [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2009.⁾
6	DISABKIDS^® - Cystic Fibrosis Module	Dissertation⁽³⁴34 Santos DMSS. Cultural adaptation and validation of DISABKIDS - Cystic Fibrosis Module® to Health related Quality of Life’s measurement of Brazilian children and adolescents: Fase I. [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2010. doi:10.11606/D.22.2010.tde-09032010-164502 https://doi.org/10.11606/D.22.2010.tde-0... ⁾; congress⁽³⁵35 Santos DMSS, Deon KC, Fegadolli C, Reis RA, Bullinger M, Santos CB. Initial Psycometric Properties of the DISABKIDS® - Cystic Fibrosis Module to Measure the Health-Related Quality of Life for Brazilian Children and Adolescent. In: 18th International Society For Quality Of Life Research (ISOQOL). Denver, Unied States; 2011. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-011-0097-z https://link.springer.com/article/10.100... ^-³⁶36 Santos DMSS, Deon KC, Fegadolli C, Reis RA, Bullinger M, Santos CB. Translation and Semantic Validation for the Brazilian Culture of the Health-Related Questionnaire DISABKIDS® - Cystic Fibrosis Module for children and Adolescent. In: 18th International Society For Quality Of Life Research (ISOQOL). Denver, Unied States; 2011. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-011-0097-z https://link.springer.com/article/10.100... ⁾; article⁽¹¹11 Santos DMSS, Deon KC, Fegadolli C, Reis RA, Torres LAGMM, Bullinger M, et al. Adaptação cultural e propriedades psicométricas iniciais do instrumento DISABKIDS® - Cystic Fibrosis Module - versão brasileira. Rev Esc Enferm USP. 2013 Dec 1;47(6):1311-7. doi: http://dx.doi.org/10.1590/S0080-623420130000600009 http://dx.doi.org/10.1590/S0080-62342013... ⁾
7	DISABKIDS^® - Cystic Fibrosis Module	Thesis⁽³⁷37 Santos DMSS. Validation DISABKIDS® - Cystic Fibrosis Module instrument for Brazilian children and adolescents [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2013. doi:10.11606/T.22.2013.tde-11072014-092749 https://doi.org/10.11606/T.22.2013.tde-1... ⁾; congress⁽³⁸38 Santos DMSS, Deon KC, Kourrouski MFC, Bullinger M, Santos CB. Validation for Brazil of DISABKIDS® - cystic fibrosis module, proxy version, for parents or caregivers of children and adolescents with cystic fibrosis. In: 21th International Society For Quality Of Life Research (ISOQOL). Germany, Berlin; 2014. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-014-0769-6 https://link.springer.com/article/10.100... ⁾; article⁽¹²12 Santos DMSS, Deon KC, Bullinger M, Santos CB. Validity of the DISABKIDS® - Cystic Fibrosis Module for Brazilian children and adolescents. Rev. Latino-Am. Enfermagem. 2014 Oct; 22(5):819-25. doi: http://dx.doi.org/10.1590/0104-1169.3450.2485 http://dx.doi.org/10.1590/0104-1169.3450... ⁾
8	DISABKIDS^® - Atopic Dermatitis Module	Dissertation⁽³⁹39 Deon KC. Cultural adaptation and validation of the Atopic Dermatitis Module from the instrument of measurement of children and adolescents Health Related Quality of Life DISABKIDS®-MDA - preliminary results [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2009. doi:10.11606/D.22.2009.tde-29102009-143802 https://doi.org/10.11606/D.22.2009.tde-2... ⁾; article⁽¹³13 Deon KC, Santos DMSS, Bullinger M, Santos CB. Preliminary psycometric assessment of the Brazilian version of the DISABKIDS® Atopic Dermatitis Module. Rev Saúde Pública. 2011 Dec;45(6):1072-8. doi: http://dx.doi.org/10.1590/S0034-89102011005000067 http://dx.doi.org/10.1590/S0034-89102011... ^,⁴⁰40 Deon KC, Santos DMSS, Reis RA, Fegadolli C, Bullinger M, Santos CB. Translation and cultural adaptation of the Brazilian version of DISABKIDS® Atopic Dermatitis Module (ADM). Rev Esc Enferm USP. 2011;45(2):450-7. doi: http://dx.doi.org/10.1590/S0080-62342011000200021 http://dx.doi.org/10.1590/S0080-62342011... ⁾
9	DISABKIDS^® - Atopic Dermatitis Module	Thesis⁽⁴¹41 Deon KC. Validation for Brazilian children and adolescents of the instrument for measuring Health-related Quality of Life-DISABKIDS® - Atopic Dermatitis. [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2013. doi:10.11606/T.22.2013.tde-07012014-152509 https://doi.org/10.11606/T.22.2013.tde-0... ⁾
10	DISABKIDS^® - Asthma Module	SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴²42 Galiano C. Adaptação cultural, para o Brasil, do módulo específico Asma, do instrumento de avaliação da Qualidade de Vida Relacionada à Saúde de crianças e adolescentes - DISABKIDS®. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2011.⁾
11		SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴³43 Barros LA. Validação do instrumento DISABKIDS® - Módulo Asma para crianças e adolescentes brasileiros, versão “self”. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2015.⁾
12		SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴⁴44 Santos LTF. Validação do instrumento DISABKIDS® - Módulo Asma para crianças e adolescentes brasileiros, versão “proxy”. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2015.⁾
13	DISABKIDS^® - Arthritis Module	SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴⁵45 Andrade AB. Adaptação cultural, para o Brasil, do módulo específico Artrite, do instrumento de avaliação da Qualidade de Vida Relacionada à Saúde de crianças e adolescentes - DISABKIDS®. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2011.⁾
14	DISABKIDS^® - Arthritis Module	SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴⁶46 Caroni RC. Propriedades psicométricas do instrumento DISABKIDS® - Módulo Artrite reumatoide para crianças e adolescentes brasileiros. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014.⁾
15	DISABKIDS^® - Epilepsy Module	SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴⁷47 Santoro JVN. Adaptação cultural, para o Brasil, do módulo específico Epilepsia, do instrumento de avaliação da Qualidade de Vida Relacionada à Saúde de crianças e adolescentes - DISABKIDS®. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2013.⁾
16	DISABKIDS^® - Epilepsy Module	SI^* * SI = Scientific Initiation; ∕Final paper⁽⁴⁸48 Mendes JFL. Propriedades psicométricas do DISABKIDS® - Epilepsy Module para crianças e adolescentes brasileiros, versão “proxy”. [Iniciação Científica]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014.⁾
17	DISABKIDS^® - Living with HIV^† † HIV = Human Immunodeficiency Virus Module	Congress⁽⁴⁹49 Kourrouski MFC, Abreu IS, Oliveira ACGM, Santos DMSS, Deon KC, Cervi MC, et al. Brazilian children and adolescents infected with HIV: the initial stage of development an instrument of health-related quality of life-DISABKIDS Group. In: 19th International Society For Quality Of Life Research (ISOQOL). Hungary, Budapest; 2012. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-012-0248-x https://link.springer.com/article/10.100... ^-⁵⁰50 Santos CB, Kourrouski MFC, Bullinger M, Collet N, Deon KC, Nascimento LC, et al. Development of a specific module of the DISABKIDS® to measure the health-related quality of life of children and adolescents living with HIV/AIDS. In: 21th International Society For Quality Of Life Research (ISOQOL). Germany, Berlin; 2014. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-014-0769-6 https://link.springer.com/article/10.100... ⁾; thesis⁽⁵¹51 Kourrouski MFC. Specific module of the instrument DISABKIDS® of life quality evaluation related to the health of Brazilian children and adolescents living with HIV [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo;2014. doi:10.11606/T.22.2014.tde-22052014-162104 https://doi.org/10.11606/T.22.2014.tde-2... ⁾
18		Dissertation⁽⁵²52 Oliveira ACGM. Quality of life related to health tool for Brazilian children and adolescents: specific module validation HIV-DISABKIDS® [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016. doi:10.11606/D.22.2016.tde-06052016-155337 https://doi.org/10.11606/D.22.2016.tde-0... ⁾; congress⁽⁵³53 Oliveira ACGM, Kourrouski MFC, Nascimento LC, Santos CB, Cervi MC, Collet N, et al. Health-related quality of life of children and adolescents: construction and validation of the DISABKIDS-HIV Module. In: 23th International Society For Quality Of Life Research (ISOQOL). Copenhagen, Denmark; 2016. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-016-1390-7 https://link.springer.com/article/10.100... ⁾
19	DISABKIDS^® - Chronic Kidney Disease Module	Congress⁽⁵⁴54 Abreu IS, Santos DMSS, Deon KC, Lima RAG, Kourrouski MFC, Reis RA, et al. Dimensions of quality of life of Brazilian children and adolescents in hemodialysis. In: 19th International Society For Quality Of Life Research (ISOQOL). Hungary, Budapest; 2012. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-012-0248-x https://link.springer.com/article/10.100... ^-⁵⁵55 Abreu IS, Kourrouski MFC, Nascimento LC, Lima RAG, Bullinger M, Santos CB. Quality of life of children and adolescents with chronic kidney failure undergoing hemodialysis: construction of the Specific DISABKIDS® Module. In: 21th International Society For Quality Of Life Research (ISOQOL). Germany, Berlin; 2014. [cited Oct 14, 2019]. Available from: https://link.springer.com/article/10.1007/s11136-014-0769-6 https://link.springer.com/article/10.100... ⁾; thesis⁽⁵⁶56 Abreu IS. Quality of life of children and adolescents with chronic kidney failure undergoing hemodialysis: construction of the Specific DISABKIDS® Module [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014. doi:10.11606/T.22.2014.tde-07012015-145618 https://doi.org/10.11606/T.22.2014.tde-0... ⁾; article⁽⁹9 Abreu IS, Nascimento LC, Lima RAG, Santos CB, Abreu IS, Nascimento LC, et al. Children and adolescents with chronic kidney disease in haemodialysis: perception of professionals. Rev Bras Enferm. 2015 Dec;68(6):1020-6. doi: http://dx.doi.org/10.1590/0034-7167.2015680604i http://dx.doi.org/10.1590/0034-7167.2015... ^-¹⁰10 Abreu IS, Kourrouski MFC, Santos DMSS, Bullinger M, Nascimento LC, Lima RAG, et al. Children and adolescents on hemodialysis: Attributes associated with quality of life. Rev Esc Enferm USP. 2014;48(4):602-9. doi: http://dx.doi.org/10.1590/S0080-623420140000400005 http://dx.doi.org/10.1590/S0080-62342014... ⁾
20	DISABKIDS^® - Obesity Module	SI^* * SI = Scientific Initiation; ∕Final paper^† † HIV = Human Immunodeficiency Virus (⁵⁷57 Mendes MFT. Construção do módulo específico DISABKIDS® para crianças e adolescentes brasileiros com obesidade. Fase 1: identificação dos atributos impactantes na qualidade de vida. [Iniciação Científica Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016.⁾

"Mother" project	Instrument	Category
01	Duke Anticoagulation Satisfaction Scale	Dissertation⁽⁵⁸58 Pelegrino FM. Cultural adaptation and the instrument Duke Anticoagulation Satisfaction Scale (DASS) validity: version for brazilian patients undergoing oral anticoagulant therapy [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2009. doi:10.11606/D.22.2009.tde-08062009-113803 https://doi.org/10.11606/D.22.2009.tde-0... ⁾
02	Adolescent Pediatric Pain Tool	Dissertation⁽⁵⁹59 Bortoli PS. Cross-cultural adaptation of the Adolescent Pediatric Pain Tool (APPT) for Brazilian children and adolescents with cancer. [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2011. doi:10.11606/D.22.2011.tde-31102011-084625 https://doi.org/10.11606/D.22.2011.tde-3... ⁾
03	Cardiac Patients Learning Needs Inventory	Article⁽⁶⁰60 Galdeano LE, Furuya RK, Delacio MCB, Dantas RAS, Rossi LA. Semantic validation of Cardiac Patients Learning Needs Inventory for Brazilian and Portuguese. Rev Gaúcha Enferm. 2011;32(3):602-10. doi: http://dx.doi.org/10.1590/S1983-14472011000300024 http://dx.doi.org/10.1590/S1983-14472011... ⁾
04	Body Image Quality Of Life Inventory	Dissertation⁽⁶¹61 Assunção FFO. Body Image Quality of Life Inventory-BIQLI: Adaptation to portuguese and validation for brazilian burn-victim patients [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2011. doi:10.11606/D.22.2011.tde-28112011-162411 https://doi.org/10.11606/D.22.2011.tde-2... ⁾; article⁽⁶²62 Assunção FFO, Dantas RAS, Ciol MA, Gonçalves N, Farina JA, Rossi LA. Reliability and validity of the body image quality of life inventory: Version for Brazilian burn victims. Res Nurs Health. 2013;36(3):299-310. doi: https://doi.org/10.1002/nur.21538 https://doi.org/10.1002/nur.21538... ⁾
05	Palliative Outcome Scale	Dissertation⁽⁶³63 Correia FR. Translation, cultural adaptation, and initial validation of the Palliative Outcome Scale (POS) [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2012. doi:10.11606/D.22.2012.tde-27032012-153946 https://doi.org/10.11606/D.22.2012.tde-2... ⁾
06	Identificação da Prática de Enfermeiros nas Radiodermatites	Dissertation⁽⁶⁴64 Fuzissaki MA. Elaboration and validation of na instrument for identification of the practice of nurses to handling and prevention of radiodermatitis [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2012. doi:10.11606/D.22.2012.tde-06062012-160850 https://doi.org/10.11606/D.22.2012.tde-0... ⁾; article⁽⁶⁵65 Fuzissaki MA, Clapis MJ, Santos CB, Oliveira GT. Development of an instrument to identify nurses’ practice in radiodermatitis. Rev Enferm UERJ. [Internet].2015 Aug[cited Jul 5, 2018];23(6):747-53. Available from: http://www.e-publicacoes.uerj.br/index.php/enfermagemuerj/article/view/12677 http://www.e-publicacoes.uerj.br/index.p... ^-⁶⁶66 Fuzissaki MA, Santos CB, Almeida AM, Gozzo TO, Clapis MJ. Semantic validation of an instrument to identify the nursing practice in the management of radiodermatitis. Rev Eletrônica Enferm. [Internet]. 2016 Mar 31 [cited Jul 5, 2018];18(0). Available from: https://revistas.ufg.br/fen/article/view/35164 https://revistas.ufg.br/fen/article/view... ⁾
07	Appraisal of Self Care Agency Scale-Revised	Thesis⁽⁶⁷67 Stacciarini TSG. Adaptation and validation of the scale to evaluate the self-care capacity Appraisal of Self Care Agency Scale - Revised for Brazil [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2012. doi:10.11606/T.22.2012.tde-16012013-111537 https://doi.org/10.11606/T.22.2012.tde-1... ⁾; article⁽⁶⁸68 Stacciarini TSG, Pace AE. Translation, adaptation and validation of a self-care scale for type 2 diabetes patients using insulin. Acta Paul Enferm. [Internet]. 2014 [cited Jul 5, 2018]. 27(3):221-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0103-21002014000300221&lng=pt&nrm=iso&tlng=en http://www.scielo.br/scielo.php?script=s... ⁾
08	Patient Assessment of Chronic Illness Care	Thesis⁽⁶⁹69 Landim CAP. Cultural adaptation of the Brazilian and Portuguese version of Patient Assessment of Chronic Illness Care (PACIC) [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2012. doi:10.11606/T.22.2012.tde-17042013-144940 https://doi.org/10.11606/T.22.2012.tde-1... ⁾
09	Tecnologia educacional para a avaliação clínica de recém-nascidos prematuros	Article⁽⁷⁰70 Fonseca LMM, Aredes ND, Leite AM, Santos CB, Lima RAG, Scochi CGS. Evaluation of an educational technology regarding clinical evaluation of preterm newborns. Rev. Latino-Am. Enfermagem. [Internet]. 2013 Feb [cited Jul 5, 2018];21(1):363-70. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692013000100011&lng=en&tlng=en http://www.scielo.br/scielo.php?script=s... ⁾
10	Questionnaires for knowledge and Compliance with Standard Precaution	Article⁽⁷¹71 Valim MD, Marziale MHP. Cultural adaptation of the “Questionnaires For Knowledge and Compliance With Standard Precaution” to Brazilian portuguese. Rev Gaúcha Enferm. [Internet]. 2013 Dec [cited Jul 9, 2018];34(4):28-36. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1983-14472013000400004&lng=pt&nrm=iso&tlng=en http://www.scielo.br/scielo.php?script=s... ⁾; Thesis⁽⁷²72 Valim MD. Cultural adaptation and validation of the Questionnaires for knowledge and compliance with standard precaution for Brazilian nurses [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014. doi:10.11606/T.22.2014.tde-09012015-114413 https://doi.org/10.11606/T.22.2014.tde-0... ⁾
11	Coordenação das redes de atenção à saúde pela Atenção Primária à Saúde	Thesis⁽⁷³73 Rodrigues LBB. Adaptation and validation of scale to assess the coordination of health care networks by the primary care: preliminary results [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014. doi:10.11606/T.22.2014.tde-20052014-201509 https://doi.org/10.11606/T.22.2014.tde-2... ⁾; article⁽⁷⁴74 Rodrigues LBB, Leite AC, Yamamura M, Deon KC, Arcêncio RA. Coordination of primary healthcare networks: semantic validation of an adapted instrument. Cad Saúde Pública [Internet]. 2014 Jul [cited 2018 Jul 9];30(7):1385-90. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2014000701385&lng=pt&tlng=pt http://www.scielo.br/scielo.php?script=s... ^-⁷⁵75 Rodrigues LBB, Santos CB, Goyatá SLT, Popolin MP, Yamamura M, Deon KC, et al. Assessment of the coordination of integrated health service delivery networks by the primary health care: COPAS questionnaire validation in the Brazilian context. BMC Fam Pract. [Internet]. 2015 Dec [cited Jul 9, 2018];16(1):87. Available from: http://www.ncbi.nlm.nih.gov/pubmed/26198100 http://www.ncbi.nlm.nih.gov/pubmed/26198... ⁾
12	Intervenção Educativa sobre a Medida Indireta da Pressão Arterial por profissionais de enfermagem	Thesis⁽⁷⁶76 Machado JP. Educational Intervention On Indirect Blood Pressure Measurement By Nursing Professionals: a proposition for patient safety [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014. doi:10.11606/T.22.2014.tde-20052014-194718 https://doi.org/10.11606/T.22.2014.tde-2... ⁾
13	Costs of caring for children with câncer	Article⁽⁷⁷77 Pan R, Marques AR, Santos BD, Jacob E, Santos CB, Nascimento LC, et al. Cultural adaptation to Brazil of the questionnaire Costs of caring for children with cancer. Rev. Latino-Am. Enfermagem. [Internet]. 2014 Aug [cited Jul 9, 2018];22(4):591-7. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692014000400591&lng=en&tlng=en http://www.scielo.br/scielo.php?script=s... ⁾
14	Costs of caring for children with câncer	Dissertation⁽⁷⁸78 Marques-Camargo AR. Financial experience of families in the care of children and adolescents with cancer [dissertation]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2014. doi:10.11606/D.22.2014.tde-30032015-134544 https://doi.org/10.11606/D.22.2014.tde-3... ⁾
15	Pain Assessment in Advanced Dementia	Dissertation⁽⁷⁹79 Valera GG. Tradução e adaptação cultural para o Brasil da escala Pain Assessment in Advanced Dementia PAINAD [Dissertação]. Universidade Federal de São Carlos. [Internet]; 2014 Feb [cited Jul 9, 2018]; Available from: https://repositorio.ufscar.br/handle/ufscar/3269?show=full https://repositorio.ufscar.br/handle/ufs... ⁾; article⁽⁸⁰80 Valera GG, Carezzato NL, Vale FAC, Hortense P. Cultural adaptation of the scale Pain Assessment in Advanced Dementia - PAINAD to Brazil. Rev Esc Enferm USP. [internet]. 2014 [cited Jul 9, 2018];48(3):462. Avaliable from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0080-62342014000300462&lng=en&nrm=iso&tlng=en&ORIGINALLANG=en http://www.scielo.br/scielo.php?script=s... ⁾
16	Comply with post-exposure management among health care workers	Thesis⁽⁸¹81 Jansen AC. Cultural adaptation and validation for Brazil of the instrument Comply with post-exposure management among health care workers for nursing professionals. [thesis]. São Paulo: Escola de Enfermagem da Universidade de São Paulo; 2014. doi:10.11606/T.83.2014.tde-08012015-152822 https://doi.org/10.11606/T.83.2014.tde-0... ⁾; article⁽⁸²82 Jansen AC, Marziale MHP, Santos CB, Dantas RAS, Santos DMSS. Assessment of adherence to post-exposure conducts among health workers: translation and cultural adaptation of an instrument. [Internet]. Texto Contexto - Enferm. 2015[cited Jul 5, 2018];24(3):670-9. Available from: http://www.index-f.com/textocontexto/2015/r24670.php http://www.index-f.com/textocontexto/201... ^-⁸³83 Jansen AC, Helena M, Marziale P, Santos CB, Spadotti RA. Validation of the Comply with Post-Exposure Management Among Health Care Workers Instrument for Brazil. Rev Esc Enferm USP. [Internet]. 2016 Nov/Dec [cited Jul 5, 2018];50(6):973-81. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0080-62342016000600973 http://www.scielo.br/scielo.php?script=s... ⁾
17	United States Pharmacopeia Dispensing Information	Article⁽⁸⁴84 Barros IMC, Alcantara TS, Santos ACO, Paixao FP, Araujo GG, Lyra-Junior DP. Semantic validation of subtitles and analysis of understanding of pictograms taken from the United States Pharmacopeia Dispensing Information (USP-DI). African J Pharm Pharmacol. [Internet]. Academic J. 2015 Jan; [cited Jul 5, 2018];9(1):6-11. Available from: http://www.academicjournals.org/journal/AJPP/article-abstract/70052F249742 http://www.academicjournals.org/journal/... ⁾
18	Mandala de avaliação	Dissertation⁽⁸⁵85 Barros IMDC. Mandala de avaliação: pistas para avaliação, integração e produção de diálogo no cotidiano do trabalho [dissertação]. Feira de Santana: Universidade Estadual de Feira de Santana; [internet]. 2015. [cited Oct 19, 2018]. Available from: http://tede2.uefs.br:8080/handle/tede/716 http://tede2.uefs.br:8080/handle/tede/71... ⁾
19	Food Choice Questionnaire	Article⁽⁸⁶86 Heitor SFD, Estima CCP, Neves FJ, Aguiar AS, Castro SS, Ferreira JES. Translation and cultural adaptation of the questionnaire on the reason for food choices (Food Choice Questionnaire - FCQ) into Portuguese. Cienc Saúde Coletiva. [Internet]. 2015 Aug [cited Jul 5, 2018]; 20(8):2339-46. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232015000802339&lng=pt&tlng=pt http://www.scielo.br/scielo.php?script=s... ⁾
20	Avaliação da Transferência do Tratamento diretamente observado	Article⁽⁸⁷87 Silva LMC, Andrade CS, Sicsú AN, Mitano F, Almeida JN, Santos CB, et al. Design and semantic validation of a new instrument to assess policy transfer of directly observed treatment for tuberculosis. Rev Panam Salud Publica. [Internet]. 2015 May[cited Jul 5, 2018]; 38(2):129-35. Available from: https://www.scielosp.org/article/rpsp/2015.v38n2/129-135/ https://www.scielosp.org/article/rpsp/20... ⁾; Thesis⁽⁸⁸88 Silva LMC. Development and validation of an evaluation tool of Directly Observed Theraphy of tuberculosis transfer from the perspective of mid and high-level health professionals (ATP-IINFOC-TB) [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016. doi:10.11606/T.22.2016.tde-05052016-211603 https://doi.org/10.11606/T.22.2016.tde-0... ⁾
21		Thesis⁽⁸⁹89 Peruhype RC. The planning and transfer of the Directly Observed Treatment of Tuberculosis policy in the municipality of Porto Alegre - RS [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2015. doi:10.11606/T.22.2015.tde-16062015-184557 https://doi.org/10.11606/T.22.2015.tde-1... ⁾
22	Perceived Stimatization Questionnaire e Social Comfort Questionnaire	Article⁽⁹⁰90 Freitas NO, Caltran MP, Dantas RAS, Rossi LA. Translation and cultural adaptation of the perceived stigmatization questionnaire for burn victims in Brazil. Rev da Esc Enferm. [Internet]. 2014 [cited Jul 9, 2018];48(1):25-33. Avaliable From: http://dx.doi.org/10.1590/S0080-623420140000100003 http://dx.doi.org/10.1590/S0080-62342014... ⁾; Thesis⁽⁹¹91 Freitas NDEO. Cross-cultural adaptation and validation of the Perceived Stigmatization Questionnaire (PSQ) and Social Comfort Questionnaire (SCQ) for Brazilians who suffered burn [thesis]. São Paulo: Escola de Enfermagem da Universidade de São Paulo; 2016. doi:10.11606/T.83.2017.tde-30012017-093634 https://doi.org/10.11606/T.83.2017.tde-3... ⁾
23	Tuberculosis Related Stigma	Thesis⁽⁹²92 Crispim JA. Cultural adaptation and validation of the Tuberculosis-Related Stigma Scale to Brazil - Phase I [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo;2016. doi:10.11606/T.22.2017.tde-24012017-155753 https://doi.org/10.11606/T.22.2017.tde-2... ⁾; article⁽⁹³93 Crispim JA, Touso MM, Yamamura M, Popolin MP, Garcia MCC, Santos CB, et al. Cultural adaptation of the Tuberculosis-related stigma scale to Brazil. Cienc Saúde Coletiva. [Internet]. 2016 [cited Oct 3, 2019];21(7):2233-42. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232016000702233&lng=pt&nrm=iso&tlng=en http://www.scielo.br/scielo.php?script=s... ^-⁹⁴94 Crispim JA, Silva LMC, Yamamura M, Popolin MP, Ramos ACV, Arroyo LH, et al. Validity and reliability of the tuberculosis-related stigma scale version for Brazilian Portuguese. BMC Infect Dis. [Internet]; 2017 [cited Oct 3, 2019];17(1):1-8. Avaliable from: https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-017-2615-2 https://bmcinfectdis.biomedcentral.com/a... ⁾
24	Patient Activation Measure	Thesis⁽⁹⁵95 Cunha CM. Patient Activation Measure (PAM): Adaptation and validation of the versions of 22 and 13 items in a sample of Brazilian patients with chronic diseases [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016. doi:10.11606/T.22.2016.tde-11102016-152746 https://doi.org/10.11606/T.22.2016.tde-1... ⁾
25	Quality Of recovery - 40 item	Thesis⁽⁹⁶96 Eduardo AHA. Psychometric properties of the Brazilian version of the questionnaire Quality of recovery - 40 item [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2015. doi:10.11606/T.22.2015.tde-23112015-194016 https://doi.org/10.11606/T.22.2015.tde-2... ⁾; article⁽⁹⁷97 Eduardo AHA, Santos CB, Carvalho AMP, Carvalho EC. Validation of the Brazilian version of the Quality of Recovery - 40 Item questionnaire. Acta Paul Enferm. [Internet]. 2016. [cited Out 3, 2019 ];29(3):253-9. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0103-21002016000300253&lng=pt&nrm=iso&tlng=en http://www.scielo.br/scielo.php?script=s... ⁾
26	Cartões da Qualidade da Dor	Dissertation⁽⁹⁸98 Guedes DMB. Children Pain Assessment: A Semantic Validation of Pain Quality Cards [dissertação]. São Paulo: Escola de Enfermagem da Universidade de São Paulo; 2016. doi:10.11606/D.7.2017.tde-10052017-121608 https://doi.org/10.11606/D.7.2017.tde-10... ⁾
27	Avaliação do impacto da capacitação dos Agentes Comunitários de Saúde em doenças sexualmente transmissíveis	Thesis⁽⁹⁹99 Neves JPP. The impact assessment of the Community Health Agents’ training in relation to sexually transmitted diseases, in São Sebastião do Paraíso - MG [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016. doi:10.11606/T.22.2016.tde-11102016-153801 https://doi.org/10.11606/T.22.2016.tde-1... ⁾
28	Genetic Counseling Outcome Scale	Dissertation⁽¹⁰⁰100 Ribeiro MS. Genetic Counseling Outcome Scale (GCOS-24): cultural adaptation and validation to Brazilians in process of Genetic Counseling [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016. doi:10.11606/D.22.2017.tde-25012017-104528 https://doi.org/10.11606/D.22.2017.tde-2... ⁾
29	Needs of Parents Questionnaire	Dissertation⁽¹⁰¹101 Andrade RC. Cultural adaptation and reliability assessment of the Needs of Parents Questionnaire (NPQ) for use in Brazil [dissertação]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2016. doi:10.11606/D.22.2017.tde-26012017-173255 https://doi.org/10.11606/D.22.2017.tde-2... ⁾
30	Avaliação da necessidade de saúde de pessoas com deficiência física, auditiva e visual	Thesis⁽¹⁰²102 Belmiro SSDR. Evidência de validação do instrumento de avaliação da necessidade de saúde de pessoas com deficiência física auditiva e visual [thesis]. Repositório Institucional da Universidade Federal do Rio Grande do Norte. [Internet] 2016 [Acesso 9 jul 2018]; Disponível em: https://repositorio.ufrn.br/jspui/handle/123456789/21616 https://repositorio.ufrn.br/jspui/handle... ⁾
31	Programa educativo sobre registro da pressão arterial em serviço hospitalar de emergência	Thesis⁽¹⁰³103 Daniel ACQG. Educational program concerning bood pressure documenation in emergency department: an intervention study [thesis]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2017. [cited Out 14, 2019]; 29(3): 253-9. Available from: https://www.teses.usp.br/teses/disponiveis/22/22132/tde-08082019-150438/pt-br.php https://www.teses.usp.br/teses/disponive... ⁾
32	Inventário de integração a vida universitária	Thesis⁽¹⁰⁴104 Carleto CT. Transcultural adaptation and evidences of validity of the Brazilian version of the Integration into college life inventory (I-IVU) [thesis]. Biblioteca Digital de Teses e Dissertações da Universidade Federal do Triângulo Mineiro. [Internet] 2017 [cited Jul 9, 2018]; Available from: http://bdtd.uftm.edu.br/handle/tede/475 http://bdtd.uftm.edu.br/handle/tede/475... ⁾
33	Diabetes Management Self-efficacy Scale	Article⁽¹⁵15 Pace AE, Gomes LC, Bertolin DC, Loureiro HMAM, Bijl JVD, Shortridge-Baggett LM. Adaptation and validation of the Diabetes Management Self-Efficacy Scale to Brazilian Portuguese. Rev. Latino-Am. Enfermagem. [Internet]. 2017; 25 [cited Oct 3, 2019], e2861. Available from: <http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692017000100335&lng=en&nrm=iso>. Epub May 22, 2017. ISSN 0104-1169. http://dx.doi.org/10.1590/1518-8345.1543.2861. http://www.scielo.br/scielo.php?script=s... ⁾
34	Test Oral Anticoagulation Knowledge	Article⁽¹⁶16 Praxedes MFS, Abreu MHNG, Ribeiro DD, Marcolino MS, Paiva SM, Martins MAP. Cross-cultural Adaptation of the Oral Anticoagulation Knowledge Test to the Brazilian Portuguese. Cienc Saúde Coletiva. [Internet]. 2017; [cited Oct 3, 2019];22(5):1615-29. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1413-81232017002501615&lng=pt&nrm=iso&tlng=en http://www.scielo.br/scielo.php?script=s... ⁾
35	Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being	Thesis⁽¹⁰⁵105 Alvarenga WA. FACIT-Sp-12 Spiritual Well-Being Scale: adaptation for Brazilian adolescents with chronic disease, development of the parental version, and their validations [thesi]. Ribeirão Preto: Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo; 2017. doi: https://doi.org/10.11606/T.22.2019.tde-29032018-161556 https://doi.org/10.11606/T.22.2019.tde-2... )
36	Questionário de conhecimentos sobre Práticas Forenses	Dissertation⁽¹⁰⁶106 Felipe HR. Validation of the Knowledge Questionnaire over Forensics Nursing Practices [dissertação]. Ribeirão Preto: Universidade de São Paulo, Escola de Enfermagem de Ribeirão Preto; 2018 [cited Oct 3, 2019]. Available from: http://www.teses.usp.br/teses/disponiveis/22/22132/tde-29052018-161705/pt-br.php http://www.teses.usp.br/teses/disponivei... ⁾

Group		Elaboration	Cultural Adaptation	Validation	Application
Group		n (%)	n (%)	n (%)	n (%)
A	Yes	4 (7.1)	12 (21.4)	11 (19.6)	1 (1.8)
A	No	16 (28.6)	8 (14.3)	9 (16.1)	19 (33.9)
B	Yes	6 (10.7)	33 (58.9)	20 (35.7)	5 (8.9)
B	No	30 (53.6)	3 (5.4)	16 (28.6)	31 (55.4)

		DISABKIDS^® Structured Questionnaire for Focus Groups	DISABKIDS^® Structured Questionnaire for Focus Group adapted for expert interviews	DISABKIDS^® Chronic Generic Measure	DISABKIDS^® Specific Modules
		n (%)	n (%)	n (%)	n (%)
A	Yes	4 (7.1)	2 (3.6)	11 (19.6)	12 (21.4)
A	No	16 (28.6)	18 (32.1)	9 (16.1)	8 (14.3)
B	Yes	0 (0.0)	0 (0.0)	28 (50.0)	32 (57.1)
B	No	36 (64.3)	36 (64.3)	8 (14.3)	4 (7.1)

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[1] Corresponding author: Viviane Romeiro E-mail: viviane.rom@gmail.com https://orcid.org/0000-0002-5244-627X