Purpose To compare sleep and health‐related quality of life (HRQOL) in children and adolescents with cancer who had pain, with those who had no pain during hospitalisation. Method A prospective comparative study was used to collect data from paediatric oncology units in three countries (Portugal, Brazil, USA). Participants (n = 118; 8–18 years) completed the Quality of Life Inventory (PedsQL) Cancer module, which includes a pain subscale, and wore a wrist actigraph for at least 72 hr. Results Almost half of the participants (48.3%) reported having pain. Sleep patterns were not affected by pain. Girls, adolescents and patients diagnosed with leukaemia/lymphoma who reported pain, had significantly lower HRQOL scores. Low sleep duration and HRQOL were found, irrespectively of pain status. Conclusions The low sleep duration and HRQOL score in children and adolescents with cancer highlight the importance of physical and psychosocial nursing interventions during hospitalisation. The mediating effect of gender, age and diagnoses on the relation between pain and HRQOL needs to be further understood.
Objective: To describe the health-related quality of life (HRQoL) among children with cancer; assess agreement between self and proxy-report and identify influencing factors of the differences in self and proxy-report. Methods: A descriptive cross-sectional study was conducted in two pediatric oncology units of two Portuguese hospitals. The study involved hospitalized children with cancer (8-17 years old) and their parents. Results: The child's perception of their HRQoL was 66.0 ± 13.3 and parents' perception scored 60.3 ± 15.0. The agreement between self and proxy-report was moderate (strong association). Variables related to the child's age, gender, type of tumor, time elapsed since diagnosis and number of hospitalizations did not influence the differences between self and proxy-report. Conclusion: An intervention with more support should be made in the resolution of concerns, management of pain and discomfort in children and reduce parental anxiety. It is necessary to clarify the influence of the factors that influence the differences between self and proxy-report.Keywords: Child; Cancer; Nursing; Quality of life.resumo Objetivo: Descrever a qualidade de vida relacionada com a saúde (QVRS) de crianças com câncer; avaliar a concordância entre auto e heterorrelato; e identificar fatores influenciadores das divergências no auto e heterorrelato. Métodos: Estudo descritivo e transversal desenvolvido em dois serviços oncológicos pediátricos de dois hospitais Portugueses que envolveram crianças com cancro (8-17 anos) e seus pais. Resultados: A percepção da criança da sua QVRS foi de 66,0 ± 13,3 e a dos pais de 60,3 ± 15,0. A concordância entre auto e heterorrelato foi moderada, sendo a associação forte. Variáveis relacionadas com a idade da criança, sexo, tipo de tumor tempo de diagnóstico e número de internamentos não influenciaram as divergências entre o auto e heterorrelato. Conclusão: Uma intervenção com mais apoio deve ser realizada na resolução das preocupações, gestão da dor e desconforto da criança e redução da ansiedade dos pais. É necessário esclarecer a influência dos fatores que influenciam as divergências entre o auto e heterorrelato. Palavras-chave:Criança; Câncer; Enfermagem; Qualidade de vida. resumen Objetivo: Describir la calidad de vida relacionada con la salud (CVRS) de niños con cáncer; evaluar la concordancia entre el auto y el heterorrelato; identificar factores que influencian las diferencias en el auto y el heterorrelato. Métodos: Estudio descriptivo y transversal, realizado en servicios de oncología pediátrica de dos hospitales, que involucró a niños con cáncer (8-17 anos) y sus padres. Resultados: La CVRS del niño fue 66,0 ± 13,3 y la de los padres 60,3 ± 15,0. La concordancia entre el auto y el heterorrelato fue moderada (asociación fuerte). La edad del niño, sexo, tipo de tumor, tiempo de diagnóstico y el número de hospitalizaciones no influyeron en las diferencias entre el auto y el heterorrelato. Conclusión: Una intervención con más apoyo debe ser realizada en la resolución de ...
Obtaining self-report of pain using the APPT may help clinicians to tailor pain management interventions. It may also be used in studies to provide a deeper understanding of the pain experience and to examine the effectiveness of pain management interventions. However, outcome measures and methods of scoring the different components of the APPT need to be clearly identified.
ResumoResumen R E V I E W P A P E R Background: The peculiarities of persistent pain in children with cancer make its assessment difficult. Aim: The aim was to identify persistent pain assessment tools and indicators related to this experience that have been used in children with cancer. Method of Review: Using Medline and CINAHL databases, primary studies between 2003 and 2013 assessing pain experience in children (0-18 years) with cancer were selected. The selection of studies, assessment of methodological quality, and data extraction and synthesis were performed by two researchers, following the guidelines of Joanna Briggs Institute. Presentation and Interpretation of results: Out of the 16 selected studies, 15 pain assessment tools and 2 tools also assessing other indicators were identified. An array of other indicators associated to pain experience was also identified. Conclusion: The wide variety of tools identified for pain assessment suggests scarce evidence on the best tools. Due to the nature of cancer pain, the assessment of pain intensity alone provides a narrow view of the persistent pain experienced by children with cancer.
Resumenpp.99-105 Palavras-chave: avaliação da dor; criança; adolescente; cancro; enfermagem. Resumo Revista de Enfermagem Referência A R T I G O D E I N V E S T I G A Ç Ã O Validação cultural do Adolescent Pediatric Pain Tool (APPT) em crianças portuguesas com cancroMarco contextual: La evaluación del dolor en niños con enfermedades crónicas requiere la utilización de instrumentos multidimensionales, como el Adolescent Pediatric Pain Tool (APPT), que identifiquen la intensidad, la localización y las características del dolor. Objetivos: Validar la traducción y adaptación cultural del APPT para utilizarlo con niños y adolescentes portugueses con cáncer. Metodología: Para validar la traducción, un grupo de revisores realizó un proceso independiente de traducción y retroversión del instrumento y su análisis hasta obtener el consenso. Los descriptores de las características del dolor fueron sometidos a una validación semántica por niños con cáncer (de 8 a 17 años) a través del método Q-sort. Resultados: Obtuvimos una versión final con equivalencia conceptual, semántica, idiomática y experiencial en relación al instrumento original. Los niños mostraron capacidad discriminatoria en torno a los descriptores, diferenciando las palabras que utilizan para describir el dolor de las palabras que no utilizan. Conclusión: La versión portuguesa del APPT es un instrumento culturalmente adaptado para evaluar la localización, la intensidad y las características del dolor en niños portugueses con cáncer.Palabras clave: evaluación del dolor; niño; adolescente; cáncer; enfermería.Theoretical framework: Pain assessment in children with chronic conditions requires the use of multidimensional tools, such as the Adolescent Pediatric Pain Tool (APPT), which identify the intensity, location and quality of pain. Objectives: To validate the translation and cultural adaptation of the APPT for use in portuguese children and adolescents with cancer. Methodology: The translation was validated through an independent process of translation and back-translation of the tool and its analysis was performed by a panel of reviewers until consensus was reached. The semantic validation of the descriptors of pain quality was performed by children with cancer aged 8-17 years, using the Q-sort method.Results: A final version with conceptual, semantic, idiomatic and experiential equivalence to the original tool was obtained. Children revealed discriminative ability of the descriptors, being able to distinguish the words that they used to describe pain from those that they did not use. Conclusion:The Portuguese version of the APPT is a culturally adapted tool to assess the location, intensity and quality of pain in Portuguese children with cancer.
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