The Pediatric Autism Research Cohort (PARC) Study: protocol for a patient-oriented prospective study examining trajectories of functioning in children with autism.

INTRODUCTION: The developmentally variable nature of autism poses challenges in providing timely services tailored to a child's needs. Despite a recent focus on longitudinal research, priority-setting initiatives with stakeholders highlighted the importance of studying a child's day-to-day functioning and social determinants of health to inform clinical care. To address this, we are conducting a pragmatic multi-site, patient-oriented longitudinal investigation: the Pediatric Autism Research Cohort (PARC) Study. In young children (<7 years of age) newly diagnosed with autism, we will: (1) examine variability in trajectories of adaptive functioning from the point of diagnosis into transition to school; and (2) identify factors associated with trajectories of adaptive functioning. METHODS AND ANALYSIS: We aim to recruit 1300 children under 7 years of age with a recent (within 12 months) diagnosis of autism from seven sites: six in Canada; one in Israel. Participants will be followed prospectively from diagnosis to age 8 years, with assessments at 6-month intervals. Parents/caregivers will complete questionnaires administered via a customized online research portal. Following each assessment timepoint, families will receive a research summary report describing their child's progress on adaptive functioning and related domains. Analysis of the longitudinal data will map trajectories and examine child, family and service characteristics associated with chronogeneity (interindividual and intraindividual heterogeneity over time) and possible trajectory turning points around sensitive periods like the transition to school. ETHICS AND DISSEMINATION: Ethics approvals have been received by all sites. All parents/respondents will provide informed consent when enrolling in the study. Using an integrated knowledge translation approach, where stakeholders are directly engaged in the research process, the PARC Study will identify factors associated with trajectories of functioning in children with autism. Resulting evidence will be shared with government policy makers to inform provincial and national programs. Findings will be disseminated at conferences and published in peer-reviewed journals.

Translation and Validation of the Patient Activation Measure in Portuguese People with Type 2 Diabetes Mellitus.

INTRODUCTION: Management of diabetes mellitus is largely dependent on patients' active participation in care. The 'Patient Activation Measure 13' assesses patients' knowledge, skills, and confidence in self-care. We aimed to translate, culturally adapt, and validate the 'Patient Activation Measure 13' to Portuguese, in people with type 2 diabetes. MATERIAL AND METHODS: The translation and cultural adaptation occurred in six phases. A convenience sample of people with type 2 diabetes was recruited from the waiting rooms of a diabetes outpatient centre in Lisbon, between March and April 2014. The questionnaire was self-administered; medical records were reviewed to obtain glycated haemoglobin levels. Main statistical analyses were based on the Rasch rating scale model. RESULTS: The response rate for the final questionnaire was 76%. Rasch analysis was conducted on 193 respondents. Respondents had a mean age of 67.1 (SD 10.1) years, 42.7% were women, and the mean patient activation measure score (0 - 100) in the sample was 58.5 (SD 10.1). The sample was low to moderate in terms of activation: 40.4% were low in activation (levels 1 and 2), 49.7% were in level 3, and 9.8% were in level 4, the highest level of activation. All items had good fit and the response categories functioned well. Item reliability was 0.97 and person reliability was between 0.77 (real) and 0.83 (model). DISCUSSION: The 'Patient Activation Measure 13' was translated and culturally adapted to European Portuguese and validated in people with diabetes, showing good psychometric properties. Future research should aim at evaluating test-retest reliability of the Portuguese 'Patient Activation Measure 13', and exploring its ability to measure changes in activation over time. CONCLUSION: The 'Patient Activation Measure 13' is now available in European Portuguese and has good psychometric properties.

Introdução: A gestão da diabetes mellitus é, em grande parte, dependente da participação ativa dos doentes no processo de cuidados. O questionário de ativação do doente (Patient Activation Measure 13) avalia o conhecimento, capacidade técnica e confiança do doente nos auto-cuidados. Este estudo teve como objetivo a tradução, adaptação cultural e validação do questionário Patient Activation Measure 13 para português, em pessoas com diabetes tipo 2. Material e Métodos: A tradução e adaptação cultural ocorreu em seis fases. O recrutamento decorreu nas salas de espera da Associação Protetora dos Diabéticos de Portugal, entre março e abril de 2014 (amostra de conveniência). O questionário foi auto- administrado; os valores de hemoglobina glicada foram obtidos a partir do processo clínico eletrónico. A análise psicométrica baseou- se no modelo de Rasch. Resultados: A taxa de resposta foi de 76% e 193 indivíduos foram incluídos na análise psicométrica. A idade média dos participantes foi 67 (desvio padrão 10,1) anos, 42,7% eram mulheres, e a média do score do Patient Activation Measure (0 - 100) na amostra foi 58,5 (desvio padrão 10,1). A amostra apresentou níveis baixos a moderados de ativação. Todos os itens apresentaram bom ajuste e as categorias de resposta funcionaram adequadamente. A fiabilidade dos itens foi 0,97 e a fiabilidade das pessoas encontrou-se entre 0,77 (real) e 0,83 (modelo). Discussão: O Patient Activation Measure 13 foi traduzido e adaptado culturalmente para português, bem como validado em pessoas com diabetes mellitus tipo 2, revelando boas propriedades psicométricas. Estudos futuros deverão avaliar a fiabilidade teste-reteste do Patient Activation Measure 13 Português e explorar a capacidade do mesmo em avaliar alterações na ativação ao longo do tempo. Conclusão: O Patient Activation Measure 13 está agora disponível para utilização na população Portuguesa, apresentando boas propriedades psicométricas.