RESUMO
Incorporating person-centered outcomes into clinical trials for neurodegenerative diseases has been challenging due to a deficiency in quantitative measures. Meanwhile, the integration of personally meaningful treatment targets in clinical practice remains qualitative, failing to truly inform evaluations, therapeutic interventions and longitudinal monitoring and support. We discuss the current advances and future directions in capturing individualized brain health outcomes and present an approach to integrate person-centered outcome in a scalable manner. Our approach stems from the evidence-based electronic Person-Specific Outcome Measure (ePSOM) program which prompts an individual to define personally meaningful treatment priorities and report level of confidence in managing items that matter to the individual the most (e.g., "Do I feel confident in my ability to contribute to a conversation?"). Deployed either as a single version (person only) or a dyad version (person and care partner), our proposed tool could be used as an endpoint in clinical trials, offering proof of meaningful intervention benefits and in clinical practice, by establishing an anchor for the therapeutic objectives sought by the individual.
RESUMO
RESUMO Com a atual configuração curricular dos cursos de Medicina, desde o primeiro ano do curso o estudante entra em contato com os serviços do Sistema Único de Saúde (SUS) e com a população usuária do sistema, o que costuma ser chamado de "contato precoce" com pacientes. Tal inserção precoce gera emoções diversas nos estudantes, positivas e negativas. Entretanto, poucos são os estudos brasileiros que abordam esta questão. Espera-se com este estudo descrever os sentimentos vivenciados por estudantes de Medicina de uma instituição privada no interior de São Paulo em três momentos do curso (primeiro, terceiro e quinto anos), quando se inicia uma nova modalidade de atividades junto aos usuários do SUS, respectivamente as atividades de interação com a comunidade na atenção básica, no ambulatório médico e no internato. Foram coletados dados de identificação demográfica e opções de sentimentos vivenciados no início e no fim do ano letivo, segundo gradação em baixa, média e alta intensidade. Os sentimentos investigados foram aborrecimento, alegria, benevolência, desilusão, desânimo, despreparo, empatia, esperança, impotência, motivação, perplexidade, raiva, realização, satisfação e tristeza. Participaram do estudo 120 estudantes. Os resultados apontaram ampla margem de sentimentos de natureza positiva, sendo alegria, motivação e satisfação os mais presentes nos três anos investigados. Desânimo, despreparo e aborrecimento foram os sentimentos negativos mais frequentemente referidos. Observou-se também intensidade forte de sentimentos positivos e intensidade razoável ou baixa de sentimentos negativos, com declínio do início para o fim do ano. Benevolência e esperança foram os sentimentos positivos menos referidos, ao passo que perplexidade, raiva e tristeza foram os sentimentos negativos menos prevalentes. Tais resultados chocam-se com o alto índice de transtornos mentais entre estudantes de Medicina referidos na literatura especializada e chamam a atenção para a necessidade de mais estudos nessa área e para a valorização do campo de prática com o usuário do sistema de saúde na formação profissional.
ABSTRACT The current medical course curricula give students opportunities to gain practical experience with the SUS (Unified Health System) and with the people who use it. This interaction is generally referred to as "early contact" with patients. This early contact generates positive and negative feelings in the students. However, few Brazilian papers have addressed this issue. The purpose of this paper is to describe the feelings experienced by medical students of a private institution in the state of São Paulo, at three important times during the course: when they begin new activities with users of the SUS (1styear), during interactions with their local community in Primary Health Care, in the medical outpatient clinic (2nd year), and during the Internship (3rd year). Demographic identification data and data on the student's feelings were collected at the beginning and end of the school year. The latter were classified as having low, medium or high intensity. The feelings investigated were boredom, happiness, benevolence, disillusionment, discouragement, unpreparedness, empathy, hope, helplessness, motivation, perplexity, rage, accomplishment, satisfaction and sadness. A total of 120 students participated in the study. The results indicate a wide range of feelings, with happiness, motivation and satisfaction being the most common positive ones over the three-year period, and discouragement, unpreparedness and boredom the most frequently mentioned negative feelings. There was also a strong intensity of positive feelings, and a reasonable or low intensity of negative feelings, which declined as the year progressed. Benevolence and hope were the least mentioned positive feelings, while perplexity, rage and sadness were the least predominant negative ones. These results do not match the high rate of mental disorders among medical students that is referred to the specialized literature, highlighting a need for further studies in this area, and for an enhancement of the field of practice with users of the Unified Health System during the professional training.