PurposeNational initiatives, such as the UK Improving Access to Psychological Therapies program (IAPT), demonstrate the feasibility of conducting empirical mental health assessments on a large scale, and similar initiatives exist in other countries. However, there is a lack of international consensus on which outcome domains are most salient to monitor treatment progress and how they should be measured. The aim of this project was to propose (1) an essential set of outcome domains relevant across countries and cultures, (2) a set of easily accessible patient-reported instruments, and (3) a psychometric approach to make scores from different instruments comparable.MethodsTwenty-four experts, including ten health outcomes researchers, ten clinical experts from all continents, two patient advocates, and two ICHOM coordinators worked for seven months in a consensus building exercise to develop recommendations based on existing evidence using a structured consensus-driven modified Delphi technique.ResultsThe group proposes to combine an assessment of potential outcome predictors at baseline (47 items: demographics, functional, clinical status, etc.), with repeated assessments of disease-specific symptoms during the treatment process (19 items: symptoms, side effects, etc.), and a comprehensive annual assessment of broader treatment outcomes (45 items: remission, absenteeism, etc.). Further, it is suggested reporting disease-specific symptoms for depression and anxiety on a standardized metric to increase comparability with other legacy instruments. All recommended instruments are provided online (www.ichom.org).ConclusionAn international standard of health outcomes assessment has the potential to improve clinical decision making, enhance health care for the benefit of patients, and facilitate scientific knowledge.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-017-1659-5) contains supplementary material, which is available to authorized users.

OBJETIVOS: descrever o processo de adaptação cultural para o Brasil do Módulo Genérico DISABKIDS para Condicões Crônicas (DCGM-37), um instrumento genérico para mensuração da qualidade de vida de crianças e adolescentes com condições crônicas. MÉTODOS: estudo metodológico, transversal, conduzido em ambulatórios pediátricos brasileiros, incluindo 118 crianças/adolescentes com asma ou diabetes e seus pais/cuidadores. Os processos de tradução-retrotradução e adaptação cultural foram realizados visando a obter equivalência conceitual e semântica em nível de itens. A equivalência de medida foi avaliada por análise estatística, realizada para descrição das propriedades psicométricas iniciais, segundo os critérios de validade e confiabilidade. RESULTADOS: a maioria dos itens foi considerada relevante e 14 deles foram modificados após a fase de validação semântica. Valores para a estatística alfa de Cronbach foram α=0,92 e α=0,93, para a versão crianças/adolescentes e pais/cuidadores respectivamente. A análise das correlações entre itens e dimensões mostrou validade convergente e discriminante satisfatórias. CONCLUSÕES: a fase inicial indica que o instrumento deverá constituir ferramenta válida e confiável para mensuração da qualidade de vida na realidade brasileira.

No abstract

Objective: to describe attributes associated with the Quality of Life of Brazilian transgender children and adolescents according to their own perception. Method: descriptive study conducted with 32 participants between eight and 18 years old, who were either interviewed or participated in focus groups. The statements were transcribed, grouped with the aid of the Interface de R pour les Analyses Multidimensionnelles de Textes et de Questionnaires software, version 0.7 alpha 2 and described according to the definition of Quality of Life by the World Health Organization concerning to the mental, physical, and social dimensions. Results: it was possible to identify the family nucleus as the main social support for transgender children and adolescents. However, the experience of prejudice and discrimination were negative attributes associated with Quality of Life. Conclusion: the statements indicate that lives of transgender children and adolescents are impacted by social, physical, and mental factors due to the stigma and discrimination experienced. It is expected to contribute to the formulation of public policies related to transgender children and adolescents and expand the discussion on the citizens’ duties and rights in relation to transsexuality.