Recomendações para a tradução e adaptação transcultural de instrumentos para a pesquisa e a prática em Terapia Ocupacional.

Much of the work developing and testing new instruments for use in rehabilitation research and practice has occurred in English-speaking countries. Therefore rehabilitation researchers and clinicians in other countries who want to use these instruments must fi rst undertake the work of translating them into their own language and then validating their use in a different cultural context. This process must follow established guidelines in order for the translated instrument to be valid for use. To date, however, there has been little discussion in the occupational therapy literature about how best to conduct translation or how to evaluate the validity of a translated instrument. The purpose of this article is to provide guidance to readers who may be considering translation of an instrument for occupational therapy research or practice and to assist practitioners who are evaluating whether they should use a translated instrument in their clinical work.Grande parte do desenvolvimento e validação de novos instrumentos para o uso na pesquisa e na prática da reabilitação ocorreu em países de língua inglesa. Assim, pesquisadores e profissionais da reabilitação em outros países precisam, inicialmente, assumir a tarefa de traduzir tais instrumentos para outros idiomas e validar seu uso em um contexto cultural diferente. É necessário que esse processo siga diretrizes sólidas para que o instrumento traduzido possa ser validado para uso. No entanto, há poucas discussões na literatura em Terapia Ocupacional sobre como melhor conduzir a tradução ou como avaliar a validadede um instrumento traduzido. O objetivo deste artigo é oferecer orientações aos leitores que estejam considerando traduzir um instrumento para a pesquisa ou a prática em Terapia Ocupacional e auxiliar os profi ssionais a avaliarem o uso de instrumentos traduzidos em sua prática clínica

New version of the Pediatric Evaluation of Disability Inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties

BACKGROUND: The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), developed with innovative measurement methodologies, evaluates functioning of children and youth, from 0 to 21 years, with different health conditions. It is a revision of an earlier instrument (PEDI) that has been used in national and international clinical practice and research. It was felt to be necessary to make this new version (PEDI-CAT) available in Brazil. OBJECTIVES: Translate and culturally adapt the PEDI-CAT to the Brazilian-Portuguese language and test its psychometric properties. METHOD: This methodological study was developed through the following stages: (1) translation, (2) synthesis, (3) back-translation, (4) revision by an expert committee, (5) testing of the pre-final version, and (6) evaluation of the psychometric properties. The 276 translated PEDI-CAT items were divided into three age groups (0-7, 8-14, and 15-21 years). RESULTS: The PEDI-CAT translation followed all six stages. The adaptations incorporated cultural and socioeconomic class specificities. The PEDI-CAT/Brazil showed good indices of inter-examiner (intraclass correlation coefficient-ICC=0.83-0.89) and test-retest (ICC=0.96-0.97) reliability, good internal consistency (0.99) and small standard error of measurement in all three age groups (0.12-0.17). Factor analyses grouped the items from the three functional skills domains into one factor, and items from the responsibility scale into three factors, supporting the adequacy of these factor solutions to the conceptual structure of the instrument and the developmental model. CONCLUSION: The PEDI-CAT/Brazil is a theoretically consistent, culturally appropriate, and reliable instrument. Its availability in Brazil will contribute to the evaluation and measurement of functional outcomes from clinical interventions, longitudinal follow-up, and rehabilitation research

Development of a first-contact protocol to guide assessment of adult patients in rehabilitation services networks

OBJECTIVE: This paper describes the development of the Protocol for Identification of Problems for Rehabilitation (PLPR), a tool to standardize collection of functional information based on the International Classification of Functioning, Disability and Health (ICF). DEVELOPMENT OF THE PROTOCOL: The PLPR was developed for use during the initial contact with adult patients within a public network of rehabilitation services. Steps to develop the protocol included: survey of the ICF codes most used by clinical professionals; compilation of data from functional instruments; development and pilot testing of a preliminary version in the service settings; discussion with professionals and development of the final version. The final version includes: user identification; social and health information; brief functional description (BFD); summary of the BFD; and PLPR results. Further testing of the final version will be conducted. CONCLUSIONS: The protocol standardizes the first contact between the user and the rehabilitation service. Systematic use of the protocol could also help to create a functional database that would allow comparisons between rehabilitation services and countries over time

New version of the Pediatric Evaluation of Disability Inventory (PEDI-CAT): translation, cultural adaptation to Brazil and analyses of psychometric properties

ABSTRACT Background The Pediatric Evaluation of Disability Inventory-Computer Adaptive Test (PEDI-CAT), developed with innovative measurement methodologies, evaluates functioning of children and youth, from 0 to 21 years, with different health conditions. It is a revision of an earlier instrument (PEDI) that has been used in national and international clinical practice and research. It was felt to be necessary to make this new version (PEDI-CAT) available in Brazil. Objectives Translate and culturally adapt the PEDI-CAT to the Brazilian-Portuguese language and test its psychometric properties. Method This methodological study was developed through the following stages: (1) translation, (2) synthesis, (3) back-translation, (4) revision by an expert committee, (5) testing of the pre-final version, and (6) evaluation of the psychometric properties. The 276 translated PEDI-CAT items were divided into three age groups (0-7, 8-14, and 15-21 years). Results The PEDI-CAT translation followed all six stages. The adaptations incorporated cultural and socioeconomic class specificities. The PEDI-CAT/Brazil showed good indices of inter-examiner (intraclass correlation coefficient-ICC=0.83-0.89) and test-retest (ICC=0.96-0.97) reliability, good internal consistency (0.99) and small standard error of measurement in all three age groups (0.12-0.17). Factor analyses grouped the items from the three functional skills domains into one factor, and items from the responsibility scale into three factors, supporting the adequacy of these factor solutions to the conceptual structure of the instrument and the developmental model. Conclusion The PEDI-CAT/Brazil is a theoretically consistent, culturally appropriate, and reliable instrument. Its availability in Brazil will contribute to the evaluation and measurement of functional outcomes from clinical interventions, longitudinal follow-up, and rehabilitation research

The Relationship of Maternal Prepregnancy Body Mass Index and Pregnancy Weight Gain to Neurocognitive Function at Age 10 Years among Children Born Extremely Preterm

OBJECTIVE: To assess the association between maternal prepregnancy body mass index and adequacy of pregnancy weight gain in relation to neurocognitive function in school-aged children born extremely preterm. STUDY DESIGN: Study participants were 535 ten-year-old children enrolled previously in the prospective multicenter Extremely Low Gestational Age Newborns cohort study who were products of singleton pregnancies. Soon after delivery, mothers provided information about prepregnancy weight. Prepregnancy body mass index and adequacy of weight gain were characterized based on this information. Children underwent a neurocognitive evaluation at 10 years of age. RESULTS: Maternal prepregnancy obesity was associated with increased odds of a lower score for Differential Ability Scales-II Verbal IQ, for Developmental Neuropsychological Assessment-II measures of processing speed and visual fine motor control, and for Wechsler Individual Achievement Test-III Spelling. Children born to mothers who gained an excessive amount of weight were at increased odds of a low score on the Oral and Written Language Scales Oral Expression assessment. Conversely, children whose mother did not gain an adequate amount of weight were at increased odds of a lower score on the Oral and Written Language Scales Oral Expression and Wechsler Individual Achievement Test-III Word Reading assessments. CONCLUSION: In this cohort of infants born extremely preterm, maternal obesity was associated with poorer performance on some assessments of neurocognitive function. Our findings are consistent with the observational and experimental literature and suggest that opportunities may exist to mitigate risk through education and behavioral intervention before pregnancy

Extremely low gestational age and very low birthweight for gestational age are risk factors for autism spectrum disorder in a large cohort study of 10-year-old children born at 23-27 weeks’ gestation

No prospective cohort study of high-risk children has used rigorous exposure assessment and optimal diagnostic procedures to examine the perinatal antecedents of autism spectrum disorder (ASD), separately among those with and without cognitive impairment

Recommendations from the 2023 international evidence-based guideline for the assessment and management of polycystic ovary syndrome

STUDY QUESTION What is the recommended assessment and management of those with polycystic ovary syndrome (PCOS), based on the best available evidence, clinical expertise, and consumer preference? SUMMARY ANSWER International evidence-based guidelines address prioritized questions and outcomes and include 254 recommendations and practice points, to promote consistent, evidence-based care and improve the experience and health outcomes in PCOS. WHAT IS KNOWN ALREADY The 2018 International PCOS Guideline was independently evaluated as high quality and integrated multidisciplinary and consumer perspectives from six continents; it is now used in 196 countries and is widely cited. It was based on best available, but generally very low to low quality, evidence. It applied robust methodological processes and addressed shared priorities. The guideline transitioned from consensus based to evidence-based diagnostic criteria and enhanced accuracy of diagnosis, whilst promoting consistency of care. However, diagnosis is still delayed, the needs of those with PCOS are not being adequately met, evidence quality was low and evidence-practice gaps persist. STUDY DESIGN, SIZE, DURATION The 2023 International Evidence-based Guideline update reengaged the 2018 network across professional societies and consumer organizations, with multidisciplinary experts and women with PCOS directly involved at all stages. Extensive evidence synthesis was completed. Appraisal of Guidelines for Research and Evaluation-II (AGREEII)-compliant processes were followed. The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework was applied across evidence quality, feasibility, acceptability, cost, implementation and ultimately recommendation strength and diversity and inclusion were considered throughout. PARTICIPANTS/MATERIALS, SETTING, METHODS This summary should be read in conjunction with the full Guideline for detailed participants and methods. Governance included a six-continent international advisory and management committee, five guideline development groups, and paediatric, consumer, and translation committees. Extensive consumer engagement and guideline experts informed the update scope and priorities. Engaged international society-nominated panels included paediatrics, endocrinology, gynaecology, primary care, reproductive endocrinology, obstetrics, psychiatry, psychology, dietetics, exercise physiology, obesity care, public health and other experts, alongside consumers, project management, evidence synthesis, statisticians and translation experts. Thirty-nine professional and consumer organizations covering 71 countries engaged in the process. Twenty meetings and five face-to-face forums over 12 months addressed 58 prioritized clinical questions involving 52 systematic and 3 narrative reviews. Evidence-based recommendations were developed and approved via consensus across five guideline panels, modified based on international feedback and peer review, independently reviewed for methodological rigour, and approved by the Australian Government National Health and Medical Research Council (NHMRC). MAIN RESULTS AND THE ROLE OF CHANCE The evidence in the assessment and management of PCOS has generally improved in the past five years, but remains of low to moderate quality. The technical evidence report and analyses (∼6000 pages) underpins 77 evidence-based and 54 consensus recommendations, with 123 practice points. Key updates include: i) further refinement of individual diagnostic criteria, a simplified diagnostic algorithm and inclusion of anti-Müllerian hormone (AMH) levels as an alternative to ultrasound in adults only; ii) strengthening recognition of broader features of PCOS including metabolic risk factors, cardiovascular disease, sleep apnea, very high prevalence of psychological features, and high risk status for adverse outcomes during pregnancy; iii) emphasizing the poorly recognized, diverse burden of disease and the need for greater healthcare professional education, evidence-based patient information, improved models of care and shared decision making to improve patient experience, alongside greater research; iv) maintained emphasis on healthy lifestyle, emotional wellbeing and quality of life, with awareness and consideration of weight stigma; and v) emphasizing evidence-based medical therapy and cheaper and safer fertility management. LIMITATIONS, REASONS FOR CAUTION Overall, recommendations are strengthened and evidence is improved, but remains generally low to moderate quality. Significantly greater research is now needed in this neglected, yet common condition. Regional health system variation was considered and acknowledged, with a further process for guideline and translation resource adaptation provided. WIDER IMPLICATIONS OF THE FINDINGS The 2023 International Guideline for the Assessment and Management of PCOS provides clinicians and patients with clear advice on best practice, based on the best available evidence, expert multidisciplinary input and consumer preferences. Research recommendations have been generated and a comprehensive multifaceted dissemination and translation program supports the Guideline with an integrated evaluation program. STUDY FUNDING/COMPETING INTEREST(S) This effort was primarily funded by the Australian Government via the National Health Medical Research Council (NHMRC) (APP1171592), supported by a partnership with American Society for Reproductive Medicine, Endocrine Society, European Society for Human Reproduction and Embryology, and European Society for Endocrinology. The Commonwealth Government of Australia also supported Guideline translation through the Medical Research Future Fund (MRFCRI000266). HJT and AM are funded by NHMRC fellowships. JT is funded by a Royal Australasian College of Physicians (RACP) fellowship. Guideline development group members were volunteers. Travel expenses were covered by the partnering organizations. Disclosures of interest were strictly managed according to NHMRC policy and are available with the full guideline, technical evidence report, peer review and responses (www.monash.edu/medicine/mchri/pcos). Of named authors HJT, CTT, AD, LM, LR, JBoyle, AM have no conflicts of interest to declare. JL declares grant from Ferring and Merck; consulting fees from Ferring and Titus Health Care; speaker’s fees from Ferring; unpaid consultancy for Ferring, Roche Diagnostics and Ansh Labs; and sits on advisory boards for Ferring, Roche Diagnostics, Ansh Labs, and Gedeon Richter. TP declares a grant from Roche; consulting fees from Gedeon Richter and Organon; speaker’s fees from Gedeon Richter and Exeltis; travel support from Gedeon Richter and Exeltis; unpaid consultancy for Roche Diagnostics; and sits on advisory boards for Roche Diagnostics. MC declares travels support from Merck; and sits on an advisory board for Merck. JBoivin declares grants from Merck Serono Ltd.; consulting fees from Ferring B.V; speaker’s fees from Ferring Arzneimittell GmbH; travel support from Organon; and sits on an advisory board for the Office of Health Economics. RJN has received speaker’s fees from Merck and sits on an advisory board for Ferring. AJoham has received speaker’s fees from Novo Nordisk and Boehringer Ingelheim. The guideline was peer reviewed by special interest groups across our 39 partner and collaborating organizations, was independently methodologically assessed against AGREEII criteria and was approved by all members of the guideline development groups and by the NHMRC

Recommendations from the 2023 international evidence-based guideline for the assessment and management of polycystic ovary syndrome

Study question What is the recommended assessment and management of those with polycystic ovary syndrome (PCOS), based on the best available evidence, clinical expertise, and consumer preference? Summary answer International evidence-based guidelines address prioritized questions and outcomes and include 254 recommendations and practice points, to promote consistent, evidence-based care and improve the experience and health outcomes in PCOS. What is known already The 2018 International PCOS Guideline was independently evaluated as high quality and integrated multidisciplinary and consumer perspectives from 6 continents; it is now used in 196 countries and is widely cited. It was based on best available, but generally very low- to low-quality, evidence. It applied robust methodological processes and addressed shared priorities. The guideline transitioned from consensus-based to evidence-based diagnostic criteria and enhanced accuracy of diagnosis, whilst promoting consistency of care. However, diagnosis is still delayed, the needs of those with PCOS are not being adequately met, the evidence quality was low, and evidence-practice gaps persist. Study design, size, and duration The 2023 International Evidence-based Guideline update re-engaged the 2018 network across professional societies and consumer organizations with multidisciplinary experts and women with PCOS directly involved at all stages. Extensive evidence synthesis was completed. Appraisal of Guidelines for Research and Evaluation II (AGREEII)-compliant processes were followed. The Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) framework was applied across evidence quality, feasibility, acceptability, cost, implementation, and ultimately recommendation strength, and diversity and inclusion were considered throughout. Participants/materials, setting, and methods This summary should be read in conjunction with the full guideline for detailed participants and methods. Governance included a 6-continent international advisory and management committee, 5 guideline development groups, and paediatric, consumer, and translation committees. Extensive consumer engagement and guideline experts informed the update scope and priorities. Engaged international society-nominated panels included paediatrics, endocrinology, gynaecology, primary care, reproductive endocrinology, obstetrics, psychiatry, psychology, dietetics, exercise physiology, obesity care, public health, and other experts, alongside consumers, project management, evidence synthesis, statisticians, and translation experts. Thirty-nine professional and consumer organizations covering 71 countries engaged in the process. Twenty meetings and 5 face-to-face forums over 12 months addressed 58 prioritized clinical questions involving 52 systematic and 3 narrative reviews. Evidence-based recommendations were developed and approved via consensus across 5 guideline panels, modified based on international feedback and peer review, independently reviewed for methodological rigour, and approved by the Australian Government National Health and Medical Research Council. Main results and the role of chance The evidence in the assessment and management of PCOS has generally improved in the past 5 years but remains of low to moderate quality. The technical evidence report and analyses (∼6000 pages) underpin 77 evidence-based and 54 consensus recommendations, with 123 practice points. Key updates include the following: (1) further refinement of individual diagnostic criteria, a simplified diagnostic algorithm, and inclusion of anti-Müllerian hormone levels as an alternative to ultrasound in adults only; (2) strengthening recognition of broader features of PCOS including metabolic risk factors, cardiovascular disease, sleep apnoea, very high prevalence of psychological features, and high risk status for adverse outcomes during pregnancy; (3) emphasizing the poorly recognized, diverse burden of disease and the need for greater healthcare professional education, evidence-based patient information, improved models of care, and shared decision-making to improve patient experience, alongside greater research; (4) maintained emphasis on healthy lifestyle, emotional well-being, and quality of life, with awareness and consideration of weight stigma; and (5) emphasizing evidence-based medical therapy and cheaper and safer fertility management. Limitations and reasons for caution Overall, recommendations are strengthened and evidence is improved but remains generally low to moderate quality. Significantly greater research is now needed in this neglected, yet common condition. Regional health system variation was considered and acknowledged, with a further process for guideline and translation resource adaptation provided. Wider implications of the findings The 2023 International Guideline for the Assessment and Management of PCOS provides clinicians and patients with clear advice on best practice, based on the best available evidence, expert multidisciplinary input, and consumer preferences. Research recommendations have been generated, and a comprehensive multifaceted dissemination and translation programme supports the guideline with an integrated evaluation programme

Recommendations for translation and cross-cultural adaptation of instruments for occupational therapy research and practice

Grande parte do desenvolvimento e validação de novos instrumentos para o uso na pesquisa e na prática da reabilitação ocorreu em países de língua inglesa. Assim, pesquisadores e profissionais da reabilitação em outros países precisam, inicialmente, assumir a tarefa de traduzir tais instrumentos para outros idiomas e validar seu uso em um contexto cultural diferente. É necessário que esse processo siga diretrizes sólidas para que o instrumento traduzido possa ser validado para uso. No entanto, há poucas discussões na literatura em Terapia Ocupacional sobre como melhor conduzir a tradução ou como avaliar a validadede um instrumento traduzido. O objetivo deste artigo é oferecer orientações aos leitores que estejam considerando traduzir um instrumento para a pesquisa ou a prática em Terapia Ocupacional e auxiliar os profi ssionais a avaliarem o uso de instrumentos traduzidos em sua prática clínica.Much of the work developing and testing new instruments for use in rehabilitation research and practice has occurred in English-speaking countries. Therefore rehabilitation researchers and clinicians in other countries who want to use these instruments must fi rst undertake the work of translating them into their own language and then validating their use in a different cultural context. This process must follow established guidelines in order for the translated instrument to be valid for use. To date, however, there has been little discussion in the occupational therapy literature about how best to conduct translation or how to evaluate the validity of a translated instrument. The purpose of this article is to provide guidance to readers who may be considering translation of an instrument for occupational therapy research or practice and to assist practitioners who are evaluating whether they should use a translated instrument in their clinical work