ABSTRACT Background: HIV-infected children surviving until adulthood have been transitioning to adult outpatient health care service in Brazil since the late 2000's. Deterioration of clinical condition is expected during this period, as reported among youths with non-communicable chronic diseases. Despite their young age, they are long-term hosts of the virus, have prolonged exposure to antiretroviral therapy and have suffered from the social determinants and stigma of HIV infection since early childhood. Objectives: This study aimed to 1) describe demographic and clinical characteristics at the first appointment at adult care service following pediatric care of a cohort of Brazilian youths living with HIV since childhood; and 2) retrospectively address adherence and clinical variables in the last two years of pediatric follow-up. Methods: Descriptive study. Results: 41 consecutive patients referred to adult outpatient care from a pediatric HIV unit were enrolled, median age 19 years, and median lifetime CD4 + nadir 117 cell/mm3; 89% reported previous AIDS-defining conditions. At first laboratory assessment in adult care, only 46% had undetectable (<400 copies/ml) HIV viral load and the median CD4 + count was 250 cell/mm3. Conclusion: Youths living with HIV at the transition from pediatric to adult care had poor treatment adherence, low lifetime CD4 + cell nadir, low CD4 cell count and detectable HIV viral load. Health care providers should closely monitor these adolescents in a youth friendly environment, prepared for open communication about all aspects of their health.

Sexualidade e saúde reprodutiva configuram questões relevantes para o cuidado integral à saúde de pessoas vivendo com HIV. Políticas públicas e serviços de saúde, entretanto, têm dedicado insuficiente atenção ao assunto. O objetivo deste trabalho é compreender como adolescentes e jovens soropositivos lidam com suas experiências sexuais e projetos de namoro, desejo de constituir família e de ter filhos. O estudo qualitativo entrevistou em profundidade 21 adolescentes vivendo com HIV (por transmissão vertical, sexual ou sanguínea) e 13 cuidadores de crianças e jovens, vivendo em São Paulo e em Santos, Brasil. As narrativas descrevem como aprenderam a lidar com a sexualidade e a ansiedade da revelação do diagnóstico nesse contexto. Destacam-se nas narrativas o despreparo, a desinformação sobre prevenção e a falta de apoio para lidar com a situação, assim como o estigma e a discriminação que atravessa grande parte das dificuldades relatadas. O artigo discute criticamente alguns dos desafios postos para uma adequada atenção à questão no Brasil, especialmente a consideração de jovens soropositivos como sujeitos de direitos sexuais, sugerindo diretrizes para a incorporação desta temática a um cuidado integral e humanizado de crianças e jovens vivendo com HIV.

Sexuality and reproductive healthcare represent relevant issues for comprehensive care of HIV-positive adolescents. However, public policies and health services give this issue insufficient attention. The scope of this article is to assess how HIV-positive young people and teenagers cope with their sexuality, dating and the urge to have children and start a family. In a qualitative study, in-depth interviews were staged with 21 HIV-positive (contracted by vertical, sexual or intravenous transmission) teenagers and 13 caregivers of children and youths living in Sao Paulo and Santos. The interviews revealed the different ways teenagers cope with their sexuality and with the anxiety of HIV disclosure in this context. Lack of information about HIV prevention, lack of support and skills to cope with their sexuality were revealed in the reports. Furthermore, stigma and discrimination were the most frequently reported difficulties. The main challenges to be faced in Brazil in regard to this issue are discussed, especially the need to consider HIV-positive youth as entitled to sexual rights. Recommendations are also made for incorporating the issue into a humanized and comprehensive care approach for HIV-positive children and young people.

Sexualidade e saúde reprodutiva configuram questões relevantes para o cuidado integral à saúde de pessoas vivendo com HIV. Políticas públicas e serviços de saúde, entretanto, têm dedicado insuficiente atenção ao assunto. O objetivo deste trabalho é compreender como adolescentes e jovens soropositivos lidam com suas experiências sexuais e projetos de namoro, desejo de constituir família e de ter filhos. O estudo qualitativo entrevistou em profundidade 21 adolescentes vivendo com HIV (por transmissão vertical, sexual ou sanguínea) e 13 cuidadores de crianças e jovens, vivendo em São Paulo e em Santos, Brasil. As narrativas descrevem como aprenderam a lidar com a sexualidade e a ansiedade da revelação do diagnóstico nesse contexto. Destacam-se nas narrativas o despreparo, a desinformação sobre prevenção e a falta de apoio para lidar com a situação, assim como o estigma e a discriminação que atravessa grande parte das dificuldades relatadas. O artigo discute criticamente alguns dos desafios postos para uma adequada atenção à questão no Brasil, especialmente a consideração de jovens soropositivos como sujeitos de direitos sexuais, sugerindo diretrizes para a incorporação desta temática a um cuidado integral e humanizado de crianças e jovens vivendo com HIV.

Sexuality and reproductive healthcare represent relevant issues for comprehensive care of HIV-positive adolescents. However, public policies and health services give this issue insufficient attention. The scope of this article is to assess how HIV-positive young people and teenagers cope with their sexuality, dating and the urge to have children and start a family. In a qualitative study, in-depth interviews were staged with 21 HIV-positive (contracted by vertical, sexual or intravenous transmission) teenagers and 13 caregivers of children and youths living in Sao Paulo and Santos. The interviews revealed the different ways teenagers cope with their sexuality and with the anxiety of HIV disclosure in this context. Lack of information about HIV prevention, lack of support and skills to cope with their sexuality were revealed in the reports. Furthermore, stigma and discrimination were the most frequently reported difficulties. The main challenges to be faced in Brazil in regard to this issue are discussed, especially the need to consider HIV-positive youth as entitled to sexual rights. Recommendations are also made for incorporating the issue into a humanized and comprehensive care approach for HIV-positive children and young people.

O objetivo deste estudo é descrever os resultados preliminares da adaptação, para o uso no Brasil, do questionário Quality of Life Assessment, usado para mensurar qualidade de vida relacionada à saúde (HRQL) em crianças com HIV/AIDS. O modelo de adaptação cultural considerou as avaliações de equivalência Conceitual, Itens, Semântica e de Mensuração (consistência interna e reprodutibilidade). As avaliações da equivalência conceitual, itens e semântica, mostraram que a versão para o Português é pertinente para o contexto brasileiro. Quatro de sete domínios apresentaram consistência interna acima de 0,70 (α: 0.76-0.90) e cinco de sete apresentaram reprodutibilidade (ricc: 0.41-0.70). Esta primeira versão em Português do questionário de HRQL pode ser entendida como uma valiosa ferramenta para mensurar HRQL em crianças, porém outros estudos com amostras maiores e análises mais robustas, são recomendados antes do uso no contexto brasileiro.

The objective of this study is to describe preliminary results from the cross-cultural adaptation of the Quality of Life Assessment Questionnaire, used to measure health related quality of life (HRQL) in Brazilian children aged between 5 and 11 with HIV/AIDS. The cross-cultural model evaluated the Concept, Item, Semantic and Measurement Equivalences (internal consistency and intra-observer reliability). Evaluation of the conceptual, item, semantic equivalences showed that the Portuguese version is pertinent for the Brazilian context. Four of seven domains showed internal consistency above 0.70 (α: 0.76-0.90) and five of seven revealed intra-observer reliability (ricc: 0.41-0.70). This first Portuguese version of the HRQL questionnaire can be understood as a valuable tool for assessing children's HRQL, but further studies with large samples and more robust analyses are recommended before use in the Brazilian context.

O objetivo deste estudo é descrever os resultados preliminares da adaptação, para o uso no Brasil, do questionário Quality of Life Assessment, usado para mensurar qualidade de vida relacionada à saúde (HRQL) em crianças com HIV/AIDS. O modelo de adaptação cultural considerou as avaliações de equivalência Conceitual, Itens, Semântica e de Mensuração (consistência interna e reprodutibilidade). As avaliações da equivalência conceitual, itens e semântica, mostraram que a versão para o Português é pertinente para o contexto brasileiro. Quatro de sete domínios apresentaram consistência interna acima de 0,70 (α: 0.76-0.90) e cinco de sete apresentaram reprodutibilidade (ricc: 0.41-0.70). Esta primeira versão em Português do questionário de HRQL pode ser entendida como uma valiosa ferramenta para mensurar HRQL em crianças, porém outros estudos com amostras maiores e análises mais robustas, são recomendados antes do uso no contexto brasileiro.

The objective of this study is to describe preliminary results from the cross-cultural adaptation of the Quality of Life Assessment Questionnaire, used to measure health related quality of life (HRQL) in Brazilian children aged between 5 and 11 with HIV/AIDS. The cross-cultural model evaluated the Concept, Item, Semantic and Measurement Equivalences (internal consistency and intra-observer reliability). Evaluation of the conceptual, item, semantic equivalences showed that the Portuguese version is pertinent for the Brazilian context. Four of seven domains showed internal consistency above 0.70 (α: 0.76-0.90) and five of seven revealed intra-observer reliability (ricc: 0.41-0.70). This first Portuguese version of the HRQL questionnaire can be understood as a valuable tool for assessing children's HRQL, but further studies with large samples and more robust analyses are recommended before use in the Brazilian context.

Infection by unusual microorganisms can be one of the clinical manifestations of primary immunodeficiency (PID). We report on a four-month-old child with pneumonia caused by the fungus Acremonium kiliense as the first clinical manifestation of chronic granulomatous disease. We emphasize the importance of an active search for unusual organisms in immunodeficient patients, and a precise diagnosis and early institution of specific treatment against such microorganisms for the reduction of the morbidity and mortality of these patients.

Brazil was the first developing country to provide free, universal access to antiretroviral treatment for AIDS patients. The Brazilian experience thus provides the first evidence regarding the impact of such treatment on the survival of perinatally acquired AIDS cases in the developing world. MATERIAL AND METHODS: This retrospective cohort study used medical record reviews to examine characteristics and trends in the survival of a representative sample of 914 perinatally acquired AIDS cases in 10 Brazilian cities diagnosed between 1983 and 1998. RESULTS: Survival time increased steadily and substantially. Whereas half of the children died within 20 months of diagnosis at the beginning of the epidemic, 75% of children diagnosed in 1997 and 1998 were still alive after four years of follow-up. CONCLUSIONS: Advances in management and treatment have made a great difference in the survival of Brazilian children with AIDS. These results argue strongly for making such treatment available to children in the entire developing world.

No presente trabalho são registrados dois casos de aspergilose em crianças imunocomprometidas. O estudo micológico completo identificou Aspergillus flavus como agente dos dois processos. A presença cada vez mais frequente da aspergilose invasiva deve-se ao número crescente de pacientes imunocomprometidos, muitos com hemopatias graves submetidos à quimioterapia. O diagnóstico precoce em um dos casos possibilitou remissão do processo. Tratava-se de paciente com leucemia mielóide aguda, tendo sido isolado o fungo do sangue circulante. O segundo caso evoluiu para óbito, com infecção fúngica generalizada.

Two cases of Aspergillosis in immunocompromised children are reported. Both were caused by Aspergillns flavus. Early diagnosis and treatment led to the remission of the process. One patient had acute myeloid leukemia; the fungus was isolated from the blood. The other patient with bone marrow aplasia, presented an invasive aspergillosis of the paranasal sinuses with dissemination of fungal infection; the diagnosis was obtained by histology and culture of biopsied tissue from a palatal ulceration.