DISABKIDS® in Brazil: advances and future perspectives for the production of scientific knowledge

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.


Method
The scoping review (19) 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 (20)(21) .
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 (19,21) . (5) grouping, analysis and summary of data; and (6) contact with researchers (optional) (19)(20) .
These stages guided this study, which also included considerations from other authors (21)(22) .
The research question must be designed to ensure comprehensiveness and depth (19) , and, in addition, it should be well structured, and contain information such as definition of concepts, target population, among others (21) . In addition, the question must be associated with the objective of the study (22) .
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 (23) . According to this strategy, Romeiro V, Bullinger M, Marziale MHP, Fegadolli C, Reis RA, Silveira RCCP, Costa-Júnior ML, Sousa FAEF, Conacci BJ, Nascimento FK, Santos CB.
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 (24) . 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. 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).  Rev. Latino-Am. Enfermagem 2020;28:e3257. 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)  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).
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 (20) .
In accordance with the resolution of the National  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).
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 (5,(9)(10)(12)(13)(14)40,(110)(111) .

Giving voice to the participants has been a decision-making strategy in studies on Patient Reported
Outcomes (PRO) (112)(113) . 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 (14,109) .

The projects developed in Group B began two
years after the implementation of the process for 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 (5,114) .
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 (9,83,115) .
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 (3) .