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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.

Abstracts

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


Objetivo:

mapear a produção científica brasileira que versa sobre as fases do processo metodológico para a utilização dos instrumentos e/ou formulários DISABKIDS® adaptados para o Brasil.

Método:

scoping review realizada através da busca em 10 bases de dados eletrônicas, no Google Scholar e por meio de consulta à pesquisadores, sem restrição de período ou idioma.

Resultados:

o mapeamento identificou 90 estudos científicos que envolveram 46 instrumentos, dos quais 11 (23,9%) foram realizados os processos de elaboração e/ou adaptação cultural dos instrumentos DISABKIDS® para mensuração da Qualidade de Vida de crianças ou adolescentes com condições crônicas e em 35 (76,1%) foram utilizados o Formulários de Impressões Gerais e/ou Folhas Específicas para realizar a validação semântica de outros instrumentos.

Conclusão:

constatou-se que essa scoping review permitiu avaliação abrangente do uso do instrumento e dos documentos DISABKIDS®. Em relação à validação do instrumento adaptado ao Brasil apresenta avanço positivo do cenário junto ao desenvolvimento de projetos acadêmicos/científicos no país, a partir da incorporação ao método preconizado pela literatura para elaboração, adaptação cultural e validação de instrumentos, do registro sistematizado e padronizado da percepção, bem como do entendimento da população alvo sobre a medida de interesse, ao lançar mão de formulários DISABKIDS® adaptados para esse fim.

Descritores:
Comparação Transcultural; Estudos de Validação como Assunto; Inquéritos e Questionários; Psicometria; Qualidade de Vida; Revisão


Objetivo:

mapear la producción científica que se ocupa de las etapas del proceso metodológico para el uso de los instrumentos y/o formularios adaptados DISABKIDS® a Brasil.

Método:

scoping review, búsqueda realizada en 10 bases de datos electrónicas, en el Google Scholar y por intermedio de consulta a investigadores, sin restricción de período o idioma.

Resultados:

el mapeo identificó 90 estudios científicos que involucraron 46 instrumentos, de los cuales 11 (23,9%) la elaboración y/o adaptación cultural de los instrumentos DISABKIDS® se realizaron para medir la Calidad de Vida de niños o adolescentes con afecciones crónicas y en 35 (76,1%) utilizaron los Formularios de Impresiones Generales y/o Hojas Específicas para realizar la validación semántica de otros instrumentos.

Conclusión:

se encontró que esta revisión de alcance permitió una evaluación exhaustiva del uso del instrumento y los documentos DISABKIDS®. En cuanto a la validación del instrumento adaptado a Brasil presenta un avance positivo del escenario en conjunto al desarrollo de proyectos académicos/científicos en el país, desde la incorporación al método recomendado por la literatura para la elaboración, adaptación cultural y validación de instrumentos, desde el registro sistematizado y estandarizado de la percepción, así como la comprensión de la población objetivo sobre la medida de interés mediante el uso de formularios DISABKIDS® adaptados con esta finalidad.

Descriptores:
Comparación Transcultural; Estudios de Validación como Asunto; Encuestas y Cuestionarios; Psicometría; Calidad de Vida; Revisión


Introduction

The area of health constantly requires valid and reliable measures, with instruments that are calibrated to measure constructs applied according to standards. Instruments used for research and care assess mental, social and physical aspects and are aimed at achieving good health and making decisions about care and health policies(11 Cano SJ, Hobart JC. The problem with health measurement. Patient Prefer Adherence. 2011; 5: 279-90. doi: https://doi.org/10.2147/PPA.S14399
https://doi.org/10.2147/PPA.S14399...
-22 Coluci MZO, Alexandre NMC, Milani D. Construction of measurement instruments in the area of health. Cienc Saúde Coletiva. 2015;20(3):925-36. doi: http://dx.doi.org/10.1590/1413-81232015203.04332013
http://dx.doi.org/10.1590/1413-812320152...
).

It is important to develop instruments to measure morbidity or physical aspects; however, this process is less complex than the elaboration of instruments that evaluate constructs or characteristics related to human behavior. This fact has motivated the adaptation of previously constructed instruments that are appropriate to the socio-demographic or clinical specificities of the study population(33 Fleck MPA. The World Health Organization instrument to evaluate quality of life (WHOQOL-100): characteristics and perspectives. Cienc Saúde Coletiva. 2000;5(1):33-8. doi: http://dx.doi.org/10.1590/S1413-81232000000100004
http://dx.doi.org/10.1590/S1413-81232000...

4 Curado MAS, Teles J, Marôco J. Analysis of variables that are not directly observable: Influence on decision-making during the research process. Rev Esc Enferm USP. 2014;48(1):146-52. doi: http://dx.doi.org/10.1590/S0080-623420140000100019
http://dx.doi.org/10.1590/S0080-62342014...
-55 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 Dec;6(12):1417-32. doi: https://doi.org/10.1016/0895-4356(93)90142-N
https://doi.org/10.1016/0895-4356(93)901...
).

In order to obtain reliable conclusions, studies that aim to measure subjective conditions with constructed or adapted instruments should have high methodological quality, both in the definition and in the measurement of the construct of interest(66 Mokkink LB, Terwee CB, Knol DL, Stratford PW, Alonso J, Patrick DL, et al. The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: A clarification of its content. BMC Med Res Methodol. 2010 Dec 18;10(1):22. doi: https://doi.org/10.1186/1471-2288-10-22
https://doi.org/10.1186/1471-2288-10-22...
). They should provide clinically useful, meaningful and interpretable results, and psychometric properties such as validity, reliability and responsiveness should be assessed(11 Cano SJ, Hobart JC. The problem with health measurement. Patient Prefer Adherence. 2011; 5: 279-90. doi: https://doi.org/10.2147/PPA.S14399
https://doi.org/10.2147/PPA.S14399...
,77 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 May;19(4):539-49. doi: https://doi.org/10.1007/s11136-010-9606-8
https://doi.org/10.1007/s11136-010-9606-...
-88 Pasquali L. Psychometrics. Rev Esc Enferm USP. 2009 Dec 1;43(spe):992-9. doi: http://dx.doi.org/10.1590/S0080-62342009000500002
http://dx.doi.org/10.1590/S0080-62342009...
).

In Brazil, the number of adaptations of instruments elaborated and validated in other cultures and the number of constructions of new questionnaires have been increasing. As a result, researchers have been doing this with the collaboration of international educational institutions and funding from government agencies(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...

10 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...

11 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...

12 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...

13 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...

14 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...

15 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...
-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...
).

The project DISABKIDS®, from the European group DISABKIDS®, is a collaboration of seven European countries with the main objective of voicing the concerns of children and adolescents with chronic health conditions, as well as of their parents and caregivers. The project has constructed and refined tests of a system of instruments called DISABKIDS® questionnaires(1717 Baars RM, Atherton CI, Koopman HM, Bullinger M, Power M, DISABKIDS group the D. The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents. Health Qual Life Outcomes. 2005 Nov 13;3:70. doi: https://doi.org/10.1186/1477-7525-3-70
https://doi.org/10.1186/1477-7525-3-70...
), translated into Brazilian Portuguese as Instrumentos DISABKIDS®. Among these, there are instruments that help the semantic validation process, referred in Brazilian Portuguese as Formulário DISABKIDS® de Impressão Geral (DISABKIDS® Chronic Generic Measure).and Folha DISABKIDS® Específica (DISABKIDS® Specific Modules).

DISABKIDS® instruments are valid, reliable and sensitive, as well as fast to fill and easy to score and interpret(1818 Group TD. Summary of the DISABKIDS Instruments. [Internet]. 2018 [cited Jul 11, 2018]. Available from: https://www.disabkids.org/disabkids-project/instruments/
https://www.disabkids.org/disabkids-proj...
).

The objective of this study was 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

The scoping review(1919 Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005 Feb;8(1):19-32. doi: https://doi.org/10.1080/1364557032000119616
https://doi.org/10.1080/1364557032000119...
) method, used in this study, has become popular in health research in recent years, as it does not restrict the parameters of the review to randomized controlled trials nor it requires quality evaluation of the studies included in the review(2020 Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010 Sep 20;5:69. doi: https://doi.org/10.1186/1748-5908-5-69
https://doi.org/10.1186/1748-5908-5-69...
-2121 O’Brien KK, Colquhoun H, Levac D, Baxter L, Tricco AC, Straus S, et al. Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps. BMC Health Serv Res. 2016 Dec 26;16(1):305. doi: https://doi.org/10.1186/s12913-016-1579-z
https://doi.org/10.1186/s12913-016-1579-...
). The process is interactive and requires researchers to be involved in each step and, when necessary, to redo steps to ensure that the literature is comprehensively surveyed(1919 Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005 Feb;8(1):19-32. doi: https://doi.org/10.1080/1364557032000119616
https://doi.org/10.1080/1364557032000119...
,2121 O’Brien KK, Colquhoun H, Levac D, Baxter L, Tricco AC, Straus S, et al. Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps. BMC Health Serv Res. 2016 Dec 26;16(1):305. doi: https://doi.org/10.1186/s12913-016-1579-z
https://doi.org/10.1186/s12913-016-1579-...
).

According to the systematization proposed for scoping review studies, there are five mandatory stages and one optional stage: (1) identification of the research question; (2) identification of relevant studies; (3) selection of studies; (4) data mapping; (5) grouping, analysis and summary of data; and (6) contact with researchers (optional)(1919 Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005 Feb;8(1):19-32. doi: https://doi.org/10.1080/1364557032000119616
https://doi.org/10.1080/1364557032000119...
-2020 Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010 Sep 20;5:69. doi: https://doi.org/10.1186/1748-5908-5-69
https://doi.org/10.1186/1748-5908-5-69...
).

These stages guided this study, which also included considerations from other authors(2121 O’Brien KK, Colquhoun H, Levac D, Baxter L, Tricco AC, Straus S, et al. Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps. BMC Health Serv Res. 2016 Dec 26;16(1):305. doi: https://doi.org/10.1186/s12913-016-1579-z
https://doi.org/10.1186/s12913-016-1579-...
-2222 Daudt HML, Van Mossel C, Scott SJ. Enhancing the scoping study methodology: A large, inter-professional team’s experience with Arksey and O’Malley’s framework. BMC Med Res Methodol. 2013;13(1):1-9. doi: https://doi.org/10.1186/1471-2288-13-48
https://doi.org/10.1186/1471-2288-13-48...
). The research question must be designed to ensure comprehensiveness and depth(1919 Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005 Feb;8(1):19-32. doi: https://doi.org/10.1080/1364557032000119616
https://doi.org/10.1080/1364557032000119...
), and, in addition, it should be well structured, and contain information such as definition of concepts, target population, among others(2121 O’Brien KK, Colquhoun H, Levac D, Baxter L, Tricco AC, Straus S, et al. Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps. BMC Health Serv Res. 2016 Dec 26;16(1):305. doi: https://doi.org/10.1186/s12913-016-1579-z
https://doi.org/10.1186/s12913-016-1579-...
). In addition, the question must be associated with the objective of the study(2222 Daudt HML, Van Mossel C, Scott SJ. Enhancing the scoping study methodology: A large, inter-professional team’s experience with Arksey and O’Malley’s framework. BMC Med Res Methodol. 2013;13(1):1-9. doi: https://doi.org/10.1186/1471-2288-13-48
https://doi.org/10.1186/1471-2288-13-48...
).

In the first stage, the research question was elaborated using the PICO strategy [acronym for patient (ou population), intervention, comparison, outcomes]. The use of this strategy directs the study and allows identifying keywords related to the theme. This helps the process of constructing the search strategy to find relevant studies in electronic databases, so that the best available scientific evidence can be located(2323 Santos CMC, Pimenta CAM, Nobre MRC. The PICO strategy for the research question construction and evidence search. Rev. Latino-Am. Enfermagem. [Internet]. 2007 June [cited Oct 3, 2019] ; 15(3): 508-11. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692007000300023&lng=en. http://dx.doi.org/10.1590/S0104-11692007000300023.
http://www.scielo.br/scielo.php?script=s...
). According to this strategy, P: DISABKIDS® Instruments/Forms adapted for Brazil, I: the stages of the methodological process for the release of instruments, C: not applicable, as there are no comparisons in this study, and O: advances and perspectives of scientific knowledge in Brazil. Thus, the guiding question of this research was: “What are the advances and perspectives of scientific knowledge regarding the phases of the methodological process for releasing instruments according to the use of DISABKIDS® instruments/forms adapted to Brazil?”.

To ensure the identification of relevant studies in the second stage, the search strategy occurred according to two processes. Initially, the researchers were consulted by two different means of communication.

The first one was Facebook, a free online public social network that is an important space for interaction and enables the sharing of questionnaires and transmission of information(2424 Queiroz AAFLN, Sousa AFL. PrEP Forum: an on-line debate on pre-exposure prophylaxis in Brazil. Cad Saúde Pública. [Internet]. 2017 Nov [cited Out 3, 2019] 33(11):e00112516. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2017001105007&lng=pt
http://www.scielo.br/scielo.php?script=s...
). The Facebook profile called “DISABKIDS no Brasil” was used to invite all researchers to answer the research form, which had the objectives of collecting information regarding the use of DISABKDS® instruments/forms in research and to provide access to these research for the collection of information.

The second mean was an e-mail sent to all professors, undergraduate and graduate students, and active nurses linked to a public Brazilian higher education institution. They were asked to respond to the research form.

Then, in December 2017, ten electronic databases were consulted: US National Library of Medicine National Institutes of Health (PUBMED), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (PsycINFO), Excerpta Medica dataBASE (EMBASE), Scopus, Web Of Science, Science Direct, Latin American and Caribbean Health Sciences Literature (LILACS), Brazilian Nursing Database (BDENF), Índice Bibliográfico Español en Ciencias de la Salud (IBECS) and the search engine Google Scholar (https://scholar.google.com.br/). Additionally, the bibliographic references of the studies included were contacted with specialists to check if there were any studies that were not included in the electronic search.

The search in the electronic databases did not limit period of publication nor language, and the only term used was “DISABKIDS”. Repeated studies were considered only once.

In the third stage, studies conducted in Brazil using DISABKIDS® instruments/forms adapted to Brazil in the development of research, in part or in full, were included, regardless of the language of publication. Systematic or integrative reviews, opinion articles, comments, editorials or response letters were excluded.

The studies were divided into two equal parts, and reviewed by two pairs independently. Each pair had a PhD researcher and all had expertise in methodological studies. The disagreements were settled by a third researcher, who was an associate professor, with vast and recognized experience in this process (Figure 1).

Figure 1
Flowchart of the study selection process - Ribeirão Preto, SP, Brazil, 2017

*EMBASE = Excerpta Medica dataBASE; PUBMED = US National Library of Medicine National Institutes of Health; PsycINFO = American Psychological Association; §CINAHL = Cumulative Index to Nursing and Allied Health Literature; ||BDENF = Brazilian Nursing Database; LILACS = Latin American and Caribbean Health Sciences Literature; **IBECS = Índice Bibliográfico Español en Ciencias de la Salud


The fourth stage is mapping of relevant information for synthesis and interpretation of data. To answer the research question, data were extracted and mapped according to the variables: (1) ID (identification of the study); (2) title; (3) authors; (4) year of publication; (5) objectives; (6) population/participants (number of participants as reported in the document published by the author of each study included in the review), (7) chronic condition/functionality; (8) study type/design (as published by the study author); (9) study category (thesis, dissertation, article, annals, scientific initiation or final paper); and (10) means of publication.

To group and summarize the data collected according to the fifth stage, the following processes were identified: (1) elaboration of new instruments; (2) cultural adaptation of instruments; (3) validation of instrument (complete or pilot study); (4) application of the instruments; (5) use of the DISABKIDS® structured questionnaire for focus groups; (6) use of the DISABKIDS® structured questionnaire for focus group adapted for expert interviews; (7) use of the DISABKIDS® Chronic Generic Measure; and (8) application of the DISABKIDS® Specific Modules.

The studies were divided into two groups to identify the stages of the methodological process for the release of instruments: Group A, which included studies with elaboration and/or cultural adaptation processes of the DISABKIDS® Instruments to measure Quality of Life of children or adolescents with chronic conditions; and Group B, in which the Generic Measure Forms and/or Specific Modules were used for the semantic validation of other instruments.

When verifying the release of instruments and the use of DISABKIDS® forms, the stages were described according to groups of studies defined by “mother” projects, with the objective of avoiding duplicate information collection (Figure 2, Figure 3).

Figure 2
Distribution of studies belonging to Group A, according to the "mother" project, instrument and category. Ribeirão Preto, SP, Brazil
Figure 3
Distribution of studies belonging to Group B, according to the "mother" project, instrument and category. Ribeirão Preto, SP, Brazil, 2017

To address the last stage of this review, aspects related to the means of dissemination of results, opportunities for knowledge sharing, and exchanges with those interested in the field studied should be included(2020 Levac D, Colquhoun H, O’Brien KK. Scoping studies: advancing the methodology. Implement Sci. 2010 Sep 20;5:69. doi: https://doi.org/10.1186/1748-5908-5-69
https://doi.org/10.1186/1748-5908-5-69...
).

In accordance with the resolution of the National Health Council, the project was approved by the Research Ethics Committee of the Ribeirão Preto College of Nursing, University of São Paulo (CAAE: 59431916.6.0000.5393). Before the beginning of data collection consisting of contact of researchers through an online questionnaire, the researchers received information about the project and had access to the Informed Consent Form (TCLE). They were informed that answering the questionnaire would imply signing the consent form.

Results

Ninety scientific studies involving 46 different instruments that used DISABKIDS® forms/instruments adapted to Brazil were mapped.

Among the 90 studies selected, 39 (43.3%) are directly related to DISABKIDS® instruments that measure the quality of life of children and adolescents with chronic conditions - Group A (Figure 2); and the other 51 (56.7%) are studies that used DISABKIDS® in the semantic validation stage of their research - Group B (Figure 3).

Most studies, 82 (91.1%), were conducted in the State of São Paulo, followed by three (3.3%) in Minas Gerais, two (2.2%) in the Federal District, one (1.1%) in Bahia, one in Rio Grande do Norte and one in Sergipe.

Among these studies, 29 (32.2%) are articles, 24 (26.7%) are thesis, 16 (17.8%) are dissertations, 11 (12.2%) are papers presented at scientific events, nine (10%) are undergraduate studies presented as final papers and one (1.1%) is a thesis of an Associate Professor.

A significant part (44.4%) of these studies were published in the format of scientific articles or in the annals of national or international conferences. Among the 29 articles published in scientific journals, 11 (37.9%) had international co-authorship, with at least one international author.

The impact factor of the journals ranged from 0.446 to 2.768. As for the Qualis CAPES (Higher Education Personnel Improvement Coordination) classification for Nursing, the publications are in journals with classifications A1 (5; 17.24%), A2 (13; 44.83%) and B1 (11; 37.93%).

In the stages of elaboration and cultural adaptation, there is a larger number of studies that opted for the process of cultural adaptation. Ten (17.9%) are “mother” projects, among the 56, related to the elaboration of instruments and 45 (80.4%) are related to the cultural adaptation stage (Table 1).

Table 1
Distribution of "mother" projects belonging to Groups A (n = 20) and B (n = 36) according to the stages of the methodological process for the release of instruments (n = 56) - Ribeirão Preto, SP, Brazil, 2017

The validation process occurred in 31 (55.4%) studies, of which 14 (45.2%) performed the validation of the initial psychometric properties of the instrument studied and 17 (54.8%) were related to the conclusion of the validation process for Brazil - three of which concerned elaboration and the others concerned adaptation.

Among the studies found, 21 (37.5%) did not include any stage of the validation process, which may be directly associated with the increased understanding of the complexity of the process of validation of instruments for construct measurement. This fact occurs because these studies are inserted in the measurement theory. Therefore, all psychometric assumptions to support their validity and reliability should be verified before its use(66 Mokkink LB, Terwee CB, Knol DL, Stratford PW, Alonso J, Patrick DL, et al. The COSMIN checklist for evaluating the methodological quality of studies on measurement properties: A clarification of its content. BMC Med Res Methodol. 2010 Dec 18;10(1):22. doi: https://doi.org/10.1186/1471-2288-10-22
https://doi.org/10.1186/1471-2288-10-22...

7 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 May;19(4):539-49. doi: https://doi.org/10.1007/s11136-010-9606-8
https://doi.org/10.1007/s11136-010-9606-...
-88 Pasquali L. Psychometrics. Rev Esc Enferm USP. 2009 Dec 1;43(spe):992-9. doi: http://dx.doi.org/10.1590/S0080-62342009000500002
http://dx.doi.org/10.1590/S0080-62342009...
,107107 Terwee CB, Bot SDM, Boer MR, van-der-Windt DA, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. [Internet]. 2007 Jan [cited Jul 9, 2018];60(1):34-42. Available from: http://www.ncbi.nlm.nih.gov/pubmed/17161752
http://www.ncbi.nlm.nih.gov/pubmed/17161...
).

Considering the application of instruments elaborated, adapted and validated for Brazil, it was observed that they were applied in only one study in Group A and five studies in Group B.

Among the studies that used DISABKIDS® forms adapted for Brazil, 39 (69.6%) corresponded to the Generic Measure and 44 (78.6%) to the Specific Modules. Group A included 11 (55%) and 12 (60%) projects, respectively. Group B, in turn, included 28 (77.8%) and 32 (88.9%) projects (Table 2).

Table 2
Distribution of "mother" projects belonging to Groups A (n = 20) and B (n = 36) according to the use of DISABKIDS Forms adapted for Brazil (n = 56). Ribeirão Preto, SP, Brazil, 2017

Discussion

The results showed that ever since the introduction of the stages of elaboration, translation, cultural adaptation and validation of DISABKIDS® instruments and forms in Brazil, 90 studies that presented at least one of the systematized methods were developed.

The studies were developed by researchers affiliated to recognized higher education institutions in Brazil and had products derived from scientific work, showing that the process addressed allows access to knowledge and training of researchers at different levels(108108 Beaton DE, Bombardier C, Guillemin F, Ferraz MB. Guidelines for the process of cross-cultural adaptation of self-report measures. Spine. 2000 Dec; 25(24): 3186-91. doi: 10.1097/00007632-200012150-00014
https://doi.org/10.1097/00007632-2000121...
) (Figure 1, Figure 2). The studies involved 46 different instruments that can be made available as valid and reliable measurement tools for use in various sectors in Brazil, such as health and education(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...
,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...
,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...
).

Regarding the stages of elaboration and cultural adaptation, there is a larger number of studies that performed cultural adaptation, corroborating the recommendations of the scientific literature on these aspect(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...
-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...
,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...
,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...
,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...
). In fact, the complexity and slowness of the process of elaborating an instrument for measuring subjective constructs have motivated the search and adaptation of previously constructed instruments(55 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 Dec;6(12):1417-32. doi: https://doi.org/10.1016/0895-4356(93)90142-N
https://doi.org/10.1016/0895-4356(93)901...
,109109 Gamba NCR, Martinez MR, García JC. Cross-cultural validation of the “DISABKIDS” questionnaire for quality of life among Colombian children with chronic diseases. Rev. Latino-Am. Enfermagem. [Internet]. 2018 [cited Sep 18, 2019] ; 26: e3020. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692018000100336&lng=en
http://www.scielo.br/scielo.php?script=s...
).

The process of inclusion of DISABKIDS® adapted forms in the semantic validation stage shows that researchers are concerned not only with the translation of the items of an instrument, but also want these items to be relevant and comprehensible for the target population in the process of cultural adaptation(55 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 Dec;6(12):1417-32. doi: https://doi.org/10.1016/0895-4356(93)90142-N
https://doi.org/10.1016/0895-4356(93)901...
,109109 Gamba NCR, Martinez MR, García JC. Cross-cultural validation of the “DISABKIDS” questionnaire for quality of life among Colombian children with chronic diseases. Rev. Latino-Am. Enfermagem. [Internet]. 2018 [cited Sep 18, 2019] ; 26: e3020. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692018000100336&lng=en
http://www.scielo.br/scielo.php?script=s...
).

This result reinforces the understanding of the Brazilian scientific community, which advocates the use of a standardized method for the cultural adaptation of the items, giving voice to the participant, which contributes to the validity and reliability of the instrument, regardless of the culture(55 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 Dec;6(12):1417-32. doi: https://doi.org/10.1016/0895-4356(93)90142-N
https://doi.org/10.1016/0895-4356(93)901...
,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...
,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...

13 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...
-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...
,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...
,110110 Barros RS, Pereira MJB, Santos CB. Assessment mandala: supply of an instrument to conduct evaluative processes in institutional support. Interface. (Botucatu) [Internet]. 2018; [cited Oct 3, 2019]. 22( 66 ): 827-40. doi: http://dx.doi.org/10.1590/1807-57622016.0787
http://dx.doi.org/10.1590/1807-57622016....
-111111 Schmidt S, Bullinger M. Current issues in cross-cultural quality of life instrument development. Arch Phys Med Rehabil. [Internet]. 2003 Apr [cited Jul 9, 2018];84(4 Suppl 2):S29-34. Available from: http://www.ncbi.nlm.nih.gov/pubmed/12692769
http://www.ncbi.nlm.nih.gov/pubmed/12692...
).

Giving voice to the participants has been a decision-making strategy in studies on Patient Reported Outcomes (PRO)(112112 Bullinger M, Quitmann J. Quality of life as patient-reported outcomes: principles of assessment. Dialogues Clin Neurosci. [Internet]. 2014 [cited Sep 18, 2019];16(2):137-45. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4140508/
https://www.ncbi.nlm.nih.gov/pmc/article...
-113113 Bullinger M, Globe D, Wasserman J, Young NL, Mackensen SV. Challenges of patient-reported outcome assessment in hemophilia care-a state of the art review. Value Health. [Internet]. 2009 [cited Sep 18, 2019 ]; 12: 808- 20. Available from: https://www.valueinhealthjournal.com/article/S1098-3015(10)60744-9/abstract
https://www.valueinhealthjournal.com/art...
). In these studies, in addition to discussing the importance of the participation of patients for the quality of care, there is also concern with their literacy and with management strategies(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...
,109109 Gamba NCR, Martinez MR, García JC. Cross-cultural validation of the “DISABKIDS” questionnaire for quality of life among Colombian children with chronic diseases. Rev. Latino-Am. Enfermagem. [Internet]. 2018 [cited Sep 18, 2019] ; 26: e3020. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-11692018000100336&lng=en
http://www.scielo.br/scielo.php?script=s...
).

The projects developed in Group B began two years after the implementation of the process for Brazil, with populations and contexts different from Group A, which included cardiac patients, coordination of health care networks, tuberculosis stigma, blood pressure, educational technology, among others. This indicates that the method was quickly incorporated and understood, and easily applied by the scientific community (Figure 3).

Attention to these details allows comparing, in different national and international scenarios, the impact of a condition and/or its management on people’s lives, in a standardized way, in multicenter tests or outcome evaluations(55 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 Dec;6(12):1417-32. doi: https://doi.org/10.1016/0895-4356(93)90142-N
https://doi.org/10.1016/0895-4356(93)901...
,114114 Herdman M, Fox-Rushby J, Badia X. A model of equivalence in the cultural adaptation of HRQoL instruments: the universalist approach. Qual Life Res. [Internet]. 1998 May [cited Jul 5, 2018];7(4): 323-35. Available from: https://bura.brunel.ac.uk/bitstream/2438/10007/1/Fulltext.pdf
https://bura.brunel.ac.uk/bitstream/2438...
).

The application of these measures can help improving the quality of care provided to the general population. These measures related to planning can be driven by: (i) attributes measured individually, through instruments that assess certain processes, such as mental, physical and social aspects, and coping with various situations; or (ii) interventions tested through clinical trials or quasi-experimental studies, using scores derived from these instruments to compare results in different groups(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...
,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...
,115115 Daniel ACQG, Machado JP, Veiga EV. Blood pressure documentation in the emergency department. Einstein (São Paulo). [Internet]. 2017 [cited Sep 18, 2019];15(1):29-33. Available from: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1679-45082017000100029&lng=en&tlng=en
http://www.scielo.br/scielo.php?script=s...
).

Additionally, the use of these measures is relevant, as health is still strongly based on the biomedical model and focused mostly on the disease, and not on a biopsychosocial approach, which would incorporate health components at body and social levels, taking into account their functionality(33 Fleck MPA. The World Health Organization instrument to evaluate quality of life (WHOQOL-100): characteristics and perspectives. Cienc Saúde Coletiva. 2000;5(1):33-8. doi: http://dx.doi.org/10.1590/S1413-81232000000100004
http://dx.doi.org/10.1590/S1413-81232000...
).

As found in this scoping review, the fact that most studies were developed in the state of São Paulo may be associated with the lack of dissemination of the method to other educational institutions in the country. Another gap found refers to the scarcity of use of the instruments in clinical practice.

Conclusion

This scoping review answers the guiding question of the research, as it presents a positive advance of the scenario of development of academic/scientific projects that include the method recommended by the literature for the elaboration, cultural adaptation and validation of instruments and for the systematic and standardized recording of the perception and understanding of the target population about the measure of interest, using DISABKIDS® forms adapted for this purpose.

The results also show perspectives regarding the dissemination of the method throughout the country, which will allow the release of valid and reliable instruments that can be used in clinical practice, aiming at reaching a biopsychosocial approach, associated with improving the quality of health care provided to the population.

The results presented show a broad use of DISABKIDS® instruments/forms adapted to Brazil, facilitating the complex and thorough process of adaptation or elaboration of instruments within the practice of researchers.

  • *
    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.

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Publication Dates

  • Publication in this collection
    17 Apr 2020
  • Date of issue
    2020

History

  • Received
    19 July 2018
  • Accepted
    09 Jan 2019
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