Resumo Este trabalho teve como objetivo apresentar, por meio de revisão narrativa da literatura científica, o perfil dos usuários atendidos em Centros de Atenção Psicossocial (CAPS), para verificar a inclusão do quesito raça/cor nessa produção. O levantamento bibliográfico foi realizado de maio a agosto de 2015 no Google Acadêmico e em bases que compõem a Biblioteca Virtual de Saúde: Medline, BDENF, Paho, Index Psicologia e Lilacs. As estratégias de busca foram: (1) “mental health services”/“serviços de saúde mental” AND “epidemiological profile”/“perfil epidemiológico” e (2) “mental health services”/“serviços de saúde mental” AND “health profile”/“perfil de saúde”. Dois revisores avaliaram títulos e resumos dos 452 artigos recuperados. A partir disso, foram excluídos os artigos repetidos e os que não tratam do perfil de usuários de CAPS, restando então 17 artigos. Desses, apenas três apresentaram dados de raça/cor, mas nenhum discutiu esses dados. Verificou-se que dois CAPS têm proporcionalmente mais negros em tratamento do que a população em geral, e evidenciou-se que o uso da variável raça/cor para caracterizar usuários dos serviços de CAPS ainda é reduzido, mesmo que seja importante marcador de cunho social - isso vai ao encontro da maneira como as desigualdades raciais no Brasil são tratadas pela sociedade: como inexistentes, o que reforça as iniquidades. Essas desigualdades têm se revelado persistentes e requerem que a política de saúde mental e a academia iniciem discussão que vá além de recomendações de conferências, para que se definam estratégias para esse enfrentamento e se produzam e reproduzam conhecimentos que possam ajudar na elaboração e implementação dessas estratégias.
Introduction: Acute hepatic porphyria (AHP) is a group of rare genetic diseases of heme biosynthesis characterized by life-threatening attacks that could be associated with psychiatric symptoms. Objectives: To investigate the burden of AHP on mental health. Methods: Adult patients who experienced >1 AHP attack within the past two years or receiving prophylactic treatment were recruited from the United States, Italy, Spain, Australia, Mexico, and Brazil. Patients taking givosiran were excluded. Participants took an online survey that used standardized questionnaires and validated screening instruments to evaluate the impact of AHP symptoms on social life, personal goals, and mental health. Results: Ninety-two patients with AHP completed the survey, mean age 41.1 years and 90% female. Patients reported substantial impact on social life – 76.1% reported that most of their symptoms were hidden and that people in their social circle did not know they had AHP; 72.8% reported feeling guilty/ upset that their symptoms and disabilities affect others. Patients also reported impacts in their personal life/goals, >80% having had to modify or give up goals important to them, more than half decline in their mental and physical health, and over a third lost their sense of purpose. PHQ-8 scores indicating moderate to severe depression in more than half of patients with AHP (58.7%) regardless of attack rate or prophylactic treatment status. GAD-7 scores indicating moderate to severe anxiety in 48.9% of patients and were highest in patients experiencing recurrent attacks (56.8%). Conclusion: Patients with AHP, regardless of attack rate, treatment received, or duration of active disease, experience a high mental health burden on their personal and social life and high frequency of moderate to severe anxiety or depression, highlighting the importance of mental health monitoring as part of disease management.
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