RESUMO
Objetivo: Comparar as capacidades funcionais e a qualidade de vida entre crianças com leucemia linfoblástica aguda em tratamento com quimioterapia e/ou radioterapia e crianças sem o tratamento, de 4 a 7 anos de idade. Método: Participaram do estudo 50 crianças, sendo 25 em tratamento (grupo experimental) e 25 que já terminaram o tratamento (grupo controle), avaliados por meio do Inventário de Avaliação Pediátrica de Incapacidade (PEDI) e da Escala de Qualidade de Vida da Criança (AUQEI). Resultados: Não houve diferença entre os grupos nos escores brutos do PEDI e na pontuação do AUQEI. Os escores normativos do PEDI apresentaram-se predominantemente abaixo do esperado para a idade em ambos os grupos. A pontuação do AUQEI demonstrou uma qualidade de vida prejudicada no grupo experimental e no controle. Conclusão: Sugere-se que a leucemia linfoblástica aguda e seus tratamentos (quimio e radioterápicos) geram prejuízos funcionais e psicossociais, tanto no momento do tratamento oncológico como após sua conclusão e remissão da doença. É relevante que haja promoção de um acompanhamento longitudinal e multiprofissional da criança com câncer, a fim de minimizar os danos e reinseri-la na comunidade efetivamente.
Assuntos
Humanos , Masculino , Feminino , Pré-Escolar , Criança , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/radioterapia , Estudos Transversais , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Estado FuncionalRESUMO
Individuals treated for childhood acute lymphoblastic leukemia (ALL) have a high survival rate. This fact, however, may lead to neurocognitive impairments in survivors, as shown in some studies. The prefrontal cortex and executive functions seem to be particularly vulnerable due to the late maturation in the development process. Executive impairments have been associated with poorer quality of life in childhood cancer survivors. A systematic review was carried out with studies that assessed executive functions in childhood ALL survivors.\ Studies were collected from five electronic databases: MEDLINE (PubMed); PsycInfo; WebOfScience; LILACS and IBECS. Eighty-four studies were retrieved from the database search, of which 50 were read in full and 26 met the inclusion criteria. The studies were heterogeneous as to the instruments used to assess executive function, the skills assessed and the comparison methods. Despite some discrepancies, ALL survivors seem to exhibit poorer executive functioning than typical controls, but this result did not hold true when subjects were compared to normative mean. Changes in brain structure and dynamics resulting from the disease itself, the toxicity of the treatment and difficulties in coping with the stress during treatment may be related to executive impairments in ALL survivors. Discussion proposed standardized methods and measures for assessing executive functioning in children during and after ALL treatment.
Assuntos
Função Executiva/fisiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Testes Neuropsicológicos , Qualidade de Vida , Sobreviventes/psicologiaRESUMO
Abstract Objective To analyze and compare the health-related quality of life of adult survivors of acute lymphocytic leukemia and Wilms’ tumor amongst themselves and in relation to healthy participants. Methods Ninety participants aged above 18 years were selected and divided into three groups, each comprising 30 individuals. The Control Group was composed of physically healthy subjects, with no cancer history; and there were two experimental groups: those diagnosed as acute lymphocytic leukemia, and those as Wilms’ Tumor. Quality of life was assessed over the telephone, using the Medical Outcomes Study 36-Item Short Form Health Survey. Results Male survivors presented with better results as compared to female survivors and controls in the Vitality domain, for acute lymphocytic leukemia (p=0.042) and Wilms’ tumor (p=0.013). For acute lymphocytic leukemia survivors, in Social aspects (p=0.031), Mental health (p=0.041), and Emotional aspects (p=0.040), the latter also for survivors of Wilms’ tumor (p=0.040). The best results related to the Functional capacity domain were recorded for the experimental group that had a late diagnosis of acute lymphocytic leukemia. There were significant differences between groups except for the Social and Emotional domains for self-perceived health, with positive responses that characterized their health as good, very good, and excellent. Conclusion Survivors of acute lymphocytic leukemia showed no evidence of relevant impairment of health-related quality of life. The Medical Outcomes Study 36-Item Short Form Health Survey (via telephone) can be a resource to access and evaluate survivors.
Resumo Objetivo Analisar e comparar a qualidade de vida relacionada à saúde de sobreviventes adultos de leucemia linfocítica aguda e tumor de Wilms entre si, e em relação a participantes sadios. Métodos Foram selecionados noventa participantes, acima de 18 anos, os quais foram divididos em três grupos, sendo cada um com 30 sujeitos: Grupo Controle, que contou com indivíduos fisicamente saudáveis, sem histórico oncológico; grupo experimental formado por pacientes que tiveram diagnóstico de leucemia linfocítica aguda; e grupo experimental formado por pacientes que tiveram diagnóstico de Tumor de Wilms. A avaliação da qualidade de vida foi realizada por telefone e utilizou o Medical Outcomes Study 36-Item Short Form Health Survey. Resultados Os sobreviventes do sexo masculino apresentaram melhores resultados em relação aos do sexo feminino e controles no Aspecto vitalidade, para leucemia linfocítica aguda (p=0,042) e tumor de Wilms (p=0,013). Para os sobreviventes de leucemia linfocítica aguda nos Aspectos sociais (p=0,031), Saúde mental (p=0,041) e Aspectos emocionais (p=0,040), neste último também para as sobreviventes de Tumor de Wilms (p=0,040). Os melhores resultados relacionados ao domínio Capacidade funcional foram registrados para o grupo experimental de pacientes que tiveram diagnóstico tardio de leucemia linfocítica aguda. Observaram-se diferenças significativas entre os grupos, exceto para os domínios Aspectos sociais e emocionais para a percepção da própria saúde, que teve respostas de cunho positivo, que qualificavam a própria saúde como boa, muito boa e excelente. Conclusão O grupo experimental de pacientes que tiveram diagnóstico de leucemia linfocítica aguda não apresentou evidências de comprometimento relevante da qualidade de vida relacionada à saúde. O Medical Outcomes Study 36-Item Short Form Health Survey (via telefone) pode ser um recurso de acesso e avaliação de sobreviventes.
Assuntos
Adolescente , Adulto , Feminino , Humanos , Masculino , Adulto Jovem , Neoplasias Renais/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Qualidade de Vida , Autorrelato , Sobreviventes/psicologia , Tumor de Wilms/epidemiologia , Idade de Início , Análise de Variância , Estudos de Casos e Controles , Seguimentos , Indicadores Básicos de Saúde , Neoplasias Renais/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Fatores Sexuais , Fatores Socioeconômicos , Taxa de Sobrevida , Telefone , Tumor de Wilms/psicologiaRESUMO
OBJECTIVE: To analyze and compare the health-related quality of life of adult survivors of acute lymphocytic leukemia and Wilms' tumor amongst themselves and in relation to healthy participants. METHODS: Ninety participants aged above 18 years were selected and divided into three groups, each comprising 30 individuals. The Control Group was composed of physically healthy subjects, with no cancer history; and there were two experimental groups: those diagnosed as acute lymphocytic leukemia, and those as Wilms' Tumor. Quality of life was assessed over the telephone, using the Medical Outcomes Study 36-Item Short Form Health Survey. RESULTS: Male survivors presented with better results as compared to female survivors and controls in the Vitality domain, for acute lymphocytic leukemia (p=0.042) and Wilms' tumor (p=0.013). For acute lymphocytic leukemia survivors, in Social aspects (p=0.031), Mental health (p=0.041), and Emotional aspects (p=0.040), the latter also for survivors of Wilms' tumor (p=0.040). The best results related to the Functional capacity domain were recorded for the experimental group that had a late diagnosis of acute lymphocytic leukemia. There were significant differences between groups except for the Social and Emotional domains for self-perceived health, with positive responses that characterized their health as good, very good, and excellent. CONCLUSION: Survivors of acute lymphocytic leukemia showed no evidence of relevant impairment of health-related quality of life. The Medical Outcomes Study 36-Item Short Form Health Survey (via telephone) can be a resource to access and evaluate survivors.
Assuntos
Neoplasias Renais/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/epidemiologia , Qualidade de Vida , Autorrelato , Sobreviventes/psicologia , Tumor de Wilms/epidemiologia , Adolescente , Adulto , Idade de Início , Análise de Variância , Estudos de Casos e Controles , Feminino , Seguimentos , Indicadores Básicos de Saúde , Humanos , Neoplasias Renais/psicologia , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Fatores Sexuais , Fatores Socioeconômicos , Taxa de Sobrevida , Telefone , Tumor de Wilms/psicologia , Adulto JovemRESUMO
OBJECTIVE: To understand the influence of play in the care process as perceived by children with cancer. METHOD: A descriptive, exploratory and qualitative study conducted in a children's cancer unit in Natal, Rio Grande do Norte, Brazil. Data were collected between October 2013 and January 2014 by means of photographic records and semi-structured interviews with eight children, and content analysis with emphasis on two categories: Auxiliary instruments during play; and The influence of play in the process of care. RESULTS: Recreational activities involve watching television, using computers, games and toys, drawing, the playroom and the clown, which provide fun, feelings of joy, distraction and interaction with other people. CONCLUSION: There are several activities at the hospital that are considered play-related and, for the children, they all benefit their care process.
Assuntos
Criança Hospitalizada/psicologia , Neoplasias/terapia , Ludoterapia , Neoplasias Cerebelares/psicologia , Neoplasias Cerebelares/terapia , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Meduloblastoma/enfermagem , Meduloblastoma/psicologia , Meduloblastoma/terapia , Neoplasias/enfermagem , Neoplasias/psicologia , Relações Enfermeiro-Paciente , Processo de Enfermagem , Aceitação pelo Paciente de Cuidados de Saúde , Ludoterapia/instrumentação , Ludoterapia/métodos , Jogos e Brinquedos , Leucemia-Linfoma Linfoblástico de Células Precursoras/enfermagem , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Pesquisa Qualitativa , Jogos de VídeoRESUMO
OBJECTIVE: To understand the influence of play in the care process as perceived by children with cancer. METHOD: A descriptive, exploratory and qualitative study conducted in a children's cancer unit in Natal, Rio Grande do Norte, Brazil. Data were collected between October 2013 and January 2014 by means of photographic records and semi-structured interviews with eight children, and content analysis with emphasis on two categories: Auxiliary instruments during play; and The influence of play in the process of care. RESULTS: Recreational activities involve watching television, using computers, games and toys, drawing, the playroom and the clown, which provide fun, feelings of joy, distraction and interaction with other people. CONCLUSION: There are several activities at the hospital that are considered play-related and, for the children, they all benefit their care process. .
OBJETIVO: Comprender la influencia de lo lúdico en el proceso de atención, en la percepción de los niños con cáncer. MÉTODO: Estudio cualitativo, exploratorio descriptivo, realizado en un sector de oncología pediátrica en Natal, Rio Grande do Norte, Brasil. Los datos fueron recogidos entre los meses de octubre de 2013 y enero de 2014, a través de los registros fotográficos y entrevistas semiestructuradas con ocho hijos, y analizados según el análisis de contenido, destacando dos categorías de discusión: Los instrumentos auxiliares en la alegría; La influencia de lo lúdico en el proceso de atención. RESULTADOS: Las actividades recreativas implican ver televisión, usar computadoras, juegos y juguetes, la realización de dibujos y el payaso, que proporcionan diversión, sentimientos de alegría, distracción y la interacción con los demás. CONCLUSIÓN: Hay varias actividades, en el hospital, entendido como lúdico y que, para el niño, todos proporcionan beneficios para su proceso de atención. .
OBJETIVOS: Compreender a influência do lúdico para o processo de cuidar, na percepção de crianças com câncer. MÉTODO: Estudo qualitativo, exploratório descritivo, realizado em um setor de oncopediatria em Natal, Rio Grande do Norte, Brasil. Os dados foram coletados entre os meses de outubro de 2013 e janeiro de 2014, por meio de registros fotográficos e entrevista semiestruturada, com oito crianças, e analisados conforme a Análise de Conteúdo, destacando-se duas categorias de discussão: Os instrumentos auxiliares na ludicidade; e A influência do lúdico no processo de cuidar. RESULTADOS: As atividades lúdicas envolvem o assistir à televisão, o uso de computadores, os jogos e os brinquedos, a realização de desenhos, a brinquedoteca e o palhaço, os quais proporcionam diversão, sentimentos de alegria, distração e interação com outras pessoas. CONCLUSÃO: Existem diversas atividades, no hospital, entendidas como lúdicas, todas as quais, para a criança, proporcionam benefícios para o seu processo de cuidar. .
Assuntos
Humanos , Masculino , Feminino , Criança , Criança Hospitalizada/psicologia , Neoplasias/terapia , Ludoterapia , Neoplasias Cerebelares/psicologia , Neoplasias Cerebelares/terapia , Entrevistas como Assunto , Meduloblastoma/enfermagem , Meduloblastoma/psicologia , Meduloblastoma/terapia , Relações Enfermeiro-Paciente , Processo de Enfermagem , Neoplasias/enfermagem , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Jogos e Brinquedos , Ludoterapia/instrumentação , Ludoterapia/métodos , Leucemia-Linfoma Linfoblástico de Células Precursoras/enfermagem , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Pesquisa Qualitativa , Jogos de VídeoRESUMO
UNLABELLED: Objective: To describe depression levels in school aged children and adolescents with acute leukemia during the treatment. MATERIALS AND METHODS: This transversal descriptive study took place during January to September 2012 and included school aged children and adolescents, carriers of acute leukemia, in treatment at a high-ranking specialty hospital. A modified Kovacs questionnaire (C O/) was applied. They were grouped according to presence or absence of depression. Inferential statistics with x2 and Statistical package SPSS 20.0 were used. RESULTS: Forty-six patients were included in the study: with depression n = 43 (94%), without depression n=3 (6%), males n= 32 (70%) and females n=14 (30%), average age 8 years old (7-15). Acute lymphoblast leukemia was the most frequent n=42 patients (91 %). Depression was found in 42 patients (91 "'o), with nine presenting a minor level (21 "'o), 11 a moderate level (26 "/o), and 23 a severe level (53 "/o). Mostly during the consolidation phase, 30 patients (70"/o) patients with no relapses showed a higher incidence of depression, 23 (54 "/o) vs. with relapses 20 (47"/o) (p = 0.870); the majority had no family history of depression 41 (95 "/o) vs. 2 (5"/o) (p = 0.017). CONCLUSIONS: We found a high percentage of severe level depression, which affected mostly male patients, suffering a relapse during the consolidation treatment phase.
Assuntos
Depressão/epidemiologia , Depressão/etiologia , Leucemia Mieloide Aguda/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Leucemia Mieloide Aguda/tratamento farmacológico , Leucemia Mieloide Aguda/psicologia , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologiaRESUMO
Objective: Describe the quality of life of patients cured of acute lymphoblastic leukemia (ALL) treated at the Oncology Unit at Roberto del Rio Children's Hospital. Method: With a transversal design, the Kidscreen-27 questionnaire was applied to a selected sample of 41 patients. Results were compared with a random sample of school children paired for age and sex. Results: Children cured from ALL had lower scores than the control group, although ANOVA showed differences were not significant. ALL children tended to self report as ill, significantly lower in physical well-being. Average followup time was 8 years. Conclusions: Quality of life of chilean children cured from ALL is similar to school children of similar age and gender. To preserve the quality of life, it is suggested that the following measures be taken: prevention of sequelae, detection and treatment of emotional disorders, and discharge at a reasonable time.
Objetivo: Describir la calidad de vida relacionada con la salud en niños curados de LLA tratados en la Unidad de Oncología del Hospital de Niños Roberto del Río. Método: Bajo un diseño transversal, se aplicó el cuestionario específico Kidscreen-27 a una muestra intencionada de 41 pacientes. Con fines ilustrativos se compararon, mediante un ANOVA, los resultados obtenidos con datos de dos sub-muestras pareadas en edad y sexo, escogidas mediante proceso de randomización en una muestra de niños chilenos escolarizados evaluados con el mismo instrumento. Resultados: Los niños curados de LLA tuvieron medias inferiores (no significativo) a la de los grupos con que se compararon. En la muestra estudiada se observó mayor proporción de niños que se autoreportan como enfermos; en el ámbito del bienestar físico tienen una media significativamente inferior que los que se reportan sanos. El tiempo medio de control oncológico fue 8 años. Conclusiones: El auto-reporte de la calidad de vida de los niños curados de LLA es similar a una muestra de niños escolarizados chilenos. Para preservar la calidad de vida de los pacientes se sugiere que se realice prevención de secuelas, pesquisa y tratamiento de trastornos emocionales y alta definitiva en un plazo razonable.
Assuntos
Humanos , Masculino , Adolescente , Feminino , Criança , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Qualidade de Vida , Inquéritos e Questionários , Sobreviventes/psicologia , Fatores Etários , Proteção da Criança , Estudos Transversais , Relações Pais-Filho , Autonomia Pessoal , Autoimagem , Apoio SocialRESUMO
Although pediatric cancer treatment has been reviewed by several authors, the lived experiences of children undergoing this process have seldom been discussed in the literature. The data for this article were obtained from a larger qualitative study that provided a collective view of the pediatric cancer experience at San Jorge Children's Hospital in Puerto Rico. In this article, findings that are directly related to the hospitalization process of these young patients are described, including the hospital as a safe haven, dealing with pain, taking control, and thriving in adversity. These findings provide a rationale for the development of a biopsychosocial model of health that emphasizes reciprocal interactions among the biological, psychological, social, cultural, and spiritual dimensions that influence health.
Assuntos
Hospitalização , Pediatria , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Adolescente , Criança , Feminino , Hospitais Pediátricos , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Porto RicoRESUMO
Pediatric cancer survivors are a growing group whose needs extend to multiple contexts and systems. Most studies dealing with the emotional sequelae of childhood cancer have neglected patients' and parents' perspectives. Few have dealt with issues faced by the treatment team. Our research constitutes the first attempt to gather a collective view of such experience in Puerto Rico. Using a phenomenological approach, in-depth interviews were conducted with acute lymphoblastic leukemia (ALL) patients, their mothers, and their oncology treatment team (18) at a children's hospital in Puerto Rico. Analysis followed the model proposed by Strauss and Corbin. In this article, findings directly associated with the cultural aspects of the Puerto Rican cancer experience are presented, including the mother's role--devotion and abandonment; the father's role--masculine vulnerability; and the family paradox. Mothers' protagonism was the central theme that emerged from these three categories.