RESUMO
Alzheimer's disease (AD) research is at a critical time. The global society is increasingly aware of the frightening rate of growth of the human and financial burden caused by this condition and of the urgent need to halt its progression. Consequently, the scientific community holds great responsibility to quickly put in place and optimize the machinery necessary for testing new treatments or interventions. In this context demand for participants for AD research is at an all-time high. In this review, we will focus on a methodological factor that is increasingly recognized as a key factor that shapes trial populations and affects validity of results in clinical trials: patient engagement, recruitment, and retention. We outline specific problems relevant to patient engagement in AD including recruiting enough participants, difficulties in participant retention, ensuring the recruited sample is representative of the general AD population, the burden of screening failures, and new challenges related to recruiting in preclinical disease. To address the urgent need for more research studying the applicability and cost-effectiveness of different recruitment strategies across different settings and nationalities, we describe the Models of Patient Engagement for Alzheimer's Disease (MOPEAD) project, a public-private partnership promoted by the Innovative Medicine Initiative (IMI), which will provide a large multinational quantitative analysis comparing different innovative recruitment models. We also discuss strategies that address each problem and draw on the experience of Fundació ACE to argue that focusing resources on comprehensive AD centers that offer coordinated clinical and social care and participate in basic and clinical research, is an effective and efficient way of implementing many of the discussed strategies.
Assuntos
Doença de Alzheimer , Participação do Paciente , Seleção de Pacientes , Doença de Alzheimer/terapia , Ensaios Clínicos como Assunto , Humanos , Pacientes Desistentes do Tratamento , Parcerias Público-PrivadasRESUMO
Resumen Objetivo. EQUIPAR para Educadores (EpE; DiBiase et al., 2010) es un programa educativo cuyo objetivo es equipar a los jóvenes con habilidades y conocimientos para su vida diaria, a fin de prevenir conductas antisociales. El presente estudio se propone analizar los efectos de la aplicación del programa en las distorsiones cognitivas, el clima de aula y las actuaciones del alumnado en situaciones de acoso escolar. Método. Participaron 123 estudiantes de 3º y 4º de ESO. Se utilizó un diseño cuasi-experimental pretest/postest con un grupo control (128 estudiantes). Resultados. Se observaron cambios positivos en las actuaciones ante el acoso escolar, pero las distorsiones cognitivas y el clima de aula percibido no mostraron cambios después de la aplicación del programa. Conclusión. Una percepción muy positiva del clima de aula y el bajo nivel de distorsiones cognitivas antes de la intervención podrían explicar la falta de efectos, junto a aspectos relacionados con la implantación del programa EpE.
Abstract Objective. EQUIP for Educators (DiBiase et al., 2010) is an educational program, whose purpose is to equip young people with skills and knowledge for their daily life in order to prevent antisocial behavior. The present study aims at analyzing the effects of the program's application on cognitive distortions, class climate and students' behavior in bullying situations. Method. A total of 123 3rd and 4th grade students from secondary education participated. A quasi-experimental pretest/posttest design with a control group (128 students) was used. Results. Positive changes were observed in students' actions in bullying situations, however no changes in cognitive distortions and perceived class climate were found after the program's application. Conclusion. A very positive perception of the class climate and the low level of cognitive distortions before the intervention could explain the lack of effects, together with other aspects related to the implementation of the EQUIP for Educators program.
Resumo Escopo . Equipar para Educadores (EpE; Di Biase et al., 2010) é um programa educativo com o objetivo de equipar aos jovens com habilidades e conhecimentos para sua vida diária, com o fim de prever condutas antissociais. O presente estudo tem como proposto analisar os efeitos da aplicação do programa nas distorções cognitivas, o clima da aula e as atuações do alunado em situações de intimidação escolar. Metodologia . Participaram 123 estudantes de 3º e 4º de ESO. Foi utilizado um desenho quase experimental pretest/postest com um grupo de controle (128 estudantes). Resultados . Foram observadas mudanças positivas nas atuações ante a intimidação escolar, mas as distorções cognitivas e o clima da aula percebidos não mostraram mudanças depois da aplicação do programa. Conclusão . Uma percepção muito positiva do clima da aula e o baixo nível de distorções cognitivas antes da intervenção poderiam explicar a falta de efeitos, junto a aspetos relacionados com a implementação do EpE.