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      Quality of life of children and adolescents with cancer: revision of studies literature that used the Pediatric Quality Of Life InventoryTM

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          Translated abstract

          Objetivo. Avaliar a qualidade de vida de crianças e adolescentes com câncer de estudos que aplicaram o Pediatric Quality of Life Inventory 3.0 Cancer Module. Metodologia. Realizou-se a busca nas bases de dados Scopus, Web of Science, BIREME, EBSCO host y PsycoInfo de artigos em espanhol, inglês e português e publicados entre 1998 a 2013 que utilizararam Pediatric Quality of Life Inventory 3.0 Cancer Module. Resultados. Selecionou-se 21 artigos, dos +quais 47,6% foram realizados na América e 61,9% das publicações estavam compreendidas entre os anos de 2011 a 2013. A variação dos escores por dimensões e o geral provavelmente esteve relacionada com a seleção dos grupos de comparação pois, pode-se perceber a diversidade dos critérios de inclusão e das variáveis para a análise em cada estudo. Não se pode verificar a existência de um padrão de uma dimensão apresentar sempre a menor ou o maior escore em relação as outras dimensões nem para o relato das crianças/adolescentes nem o relato dos parentes. Conclusão. Conclui-se que as médias dos escores por dimensões e o geral não alcançaram valores abaixo de 30 e os maiores escores por dimensões estão acima de 80. A enfermagem que se torna presença constante na vida das crianças e adolescentes com câncer pode proporcionar uma melhor qualidade de vida; pois, ao desenvolver as atividades de enfermagem, a equipe pode desmistificar, esclarecer e auxiliar no enfrentamento de todas as fases do processo do adoecimento e do tratamento.

          Translated abstract

          Objetivo. Evaluar la calidad de vida de los niños y adolescentes a quienes se aplicó la escala Pediatric Quality of Life Inventory 3.0 Cancer Module. Metodología. Se hizo búsqueda en las bases de datos Scopus, Web of Science, BIREME, EBSCO host y PsycoInfo de los artículos en español, inglés o portugués publicados entre 1998 a 2013 que utilizaron la escala. Resultados. Se seleccionaron 21 artículos, de los cuales el 47.6% se realizó en América y un 61.9% se publicó en el período 2011-2013. El rango de puntuaciones para las dimensiones, en general, fue probablemente relacionado con la selección de los grupos de comparación porque se pueden observar la diversidad de los criterios de inclusión y variables para el análisis en cada estudio. No se puede comprobar la existencia de un patrón de una dimensión presente en las puntuaciones más pequeñas o más grandes en relación a otras dimensiones en la información de los niños / adolescentes o en la de los familiares. Conclusión. De lo anterior se desprende que las puntuaciones medias de las dimensiones globales no llegaron a valores por debajo de 30, y mayores puntuaciones por dimensiones están por encima de 80. La enfermera, quien se convierte en presencia constante en la vida de niños y adolescentes con cáncer, puede proporcionar una mejor calidad de vida. Por lo tanto, el desarrollo de las actividades de enfermería y del el equipo puede llevar a desmitificar, clarificar y ayudar a abordar todas las fases del proceso de la enfermedad y del tratamiento

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          Prospective study of health-related quality of life for children with brain tumors treated with proton radiotherapy.

          We describe the health-related quality of life (HRQoL) of a cohort of children with brain tumors treated with proton radiotherapy. We recruited 142 pediatric patients with brain tumors (age 2 to 18 years) and parents of such patients treated with proton radiation at Massachusetts General Hospital from 2004 to 2010. HRQoL was assessed using the PedsQL core, brain tumor, and cancer modules (range, 0 to 100). Assessments took place during radiation and annually thereafter. We examined correlations of HRQoL with disease, treatment, and cognitive and behavioral data. Overall reports of HRQoL during treatment were 74.8 and 78.1 for child self-report (CSR) and 67.0 and 74.8 for parent proxy report (PPR) for the core and brain tumor modules, respectively. PPR demonstrated lower HRQoL scores than CSR, but the two were highly correlated. Higher HRQoL scores were significantly associated with Wechsler Full Scale Intelligence Quotient scores (administered via the age-appropriate version) and better scores on two behavioral measures. Disease type also correlated with PPR core total HRQoL score at the beginning of treatment: medulloblastoma or primitive neuroectodermal tumors, 57.8; germ cell tumors, 63.5; ependymoma or high-grade glioma, 69.8; low-grade glioma, 71.5; and other low-grade neoplasms, 78.0 (P = .001). Craniospinal irradiation and chemotherapy were negatively correlated with HRQoL. This is the first study to our knowledge of HRQoL in a cohort of children with brain tumors treated with proton radiation. This prospective study demonstrates the effect of disease type and intensity of treatment on HRQoL. It further suggests that where CSR is not possible, PPR is appropriate in most circumstances.
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            Measuring health-related quality of life in children with cancer living in mainland China: feasibility, reliability and validity of the Chinese mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module

            Background The Pediatric Quality of Life Inventory (PedsQL) is widely used instrument to measure pediatric health-related quality of life (HRQOL) for children aged 2 to 18 years. The purpose of the current study was to investigate the feasibility, reliability and validity of the Chinese mandarin version of the PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module in a group of Chinese children with cancer. Methods The PedsQL 4.0 Genetic Core Scales and the PedsQL 3.0 Cancer Module were administered to children with cancer (aged 5-18 years) and parents of such children (aged 2-18 years). For comparison, a survey on a demographically group-matched sample of the general population with children (aged 5-18) and parents of children (aged 2-18 years) was conducted with the PedsQL 4.0 Genetic Core Scales. Result The minimal mean percentage of missing item responses (except the School Functioning scale) supported the feasibility of the PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module for Chinese children with cancer. Most of the scales showed satisfactory reliability with Cronbach's α of exceeding 0.70, and all scales demonstrated sufficient test-retest reliability. Assessing the clinical validity of the questionnaires, statistically significant difference was found between healthy children and children with cancer, and between children on-treatment versus off-treatment ≥12 months. Positive significant correlations were observed between the scores of the PedsQL 4.0 Generic Core Scale and the PedsQL 3.0 Cancer Module. Exploratory factor analysis demonstrated sufficient factorial validity. Moderate to good agreement was found between child self- and parent proxy-reports. Conclusion The findings support the feasibility, reliability and validity of the Chinese Mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module in children with cancer living in mainland China.
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              Health-related quality of life assessment in Indonesian childhood acute lymphoblastic leukemia

              Background Most studies on Health-related Quality of Life (HRQOL) in children with cancer were conducted in developed countries. The aims of this study were to assess the HRQOL in childhood acute lymphoblastic leukemia (ALL) patients in Indonesia and to assess the influence of demographic and medical characteristics on HRQOL. Methods After cultural linguistic validation, a cross-sectional study of HRQOL was conducted with childhood ALL patients and their guardians in various phases of treatment using the Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Core Scale and the Pediatric Quality of Life Inventory™ (PedsQL™) 3.0 Cancer Module. Results Ninety-eight guardians and 55 patients participated. The internal consistency of both scales ranged from 0.57 to 0.92. HRQOL of Indonesian patients was comparable with those in developed countries. There were moderate to good correlations between self-reports and proxy-reports, however guardians tended to report worse HRQOL than patients. Children of the 2–5 year-group significantly had more problems in procedural anxiety, treatment anxiety and communication subscales than in older groups (p < 0.05). In the non-intensive phase HRQOL was significantly better than in the intensive phase, both in patient self-reports and proxy-reports. Conclusion Younger children had more problems in procedural anxiety, treatment anxiety and communication subscales. Therefore, special care during intervention procedures is needed to promote their normal development. Psychosocial support should be provided to children and their parents to facilitate their coping with disease and its treatment.
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                Author and article information

                Contributors
                Role: ND
                Role: ND
                Role: ND
                Role: ND
                Journal
                iee
                Investigación y Educación en Enfermería
                Invest. educ. enferm
                Imprenta Universidad de Antioquia (Medellín )
                0120-5307
                August 2015
                : 33
                : 2
                : 343-354
                Affiliations
                [1 ] Universidade Federal do Espírito Santo Brazil
                [2 ] Universidade Federal do Espírito Santo Brazil
                [3 ] Universidade Federal do Espírito Santo Brazil
                [4 ] Universidade Federal do Espírito Santo Brazil
                Article
                S0120-53072015000200017
                10.17533/udea.iee.v33n2a17
                2ca86451-09b2-4dce-97ed-1232a5d7dd2b

                http://creativecommons.org/licenses/by/4.0/

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                SciELO Colombia

                Self URI (journal page): http://www.scielo.org.co/scielo.php?script=sci_serial&pid=0120-5307&lng=en
                Categories
                NURSING

                Nursing
                calidad de vida,niño,adolescente,cuestionarios,revisión,qualidade de vida,criança,questionário,revisão

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