RESUMO
PURPOSE: The impact of hospitalization on a child's well-being leads one to consider the health-related quality of life (HRQoL) measure as a fundamental aspect of pediatric care. The aims of the study were to adapt the Spanish version of the Kid-KINDL® to hospitalized children in Chile, to obtain a reduced version of the instrument and to analyze the psychometric properties of the reduced version. DESIGN AND METHODS: An expert committee and interviews were carried out for the cross-cultural adaptation process. An exploratory factor analysis was conducted to examine the validity of the construct and to select the items for the reduced version. Cronbach's alpha was used to estimate the internal consistency of the adapted version of the Kid-KINDL® and the reliability of each component. Convergent validity was based on correlations with a pain scale. RESULTS: This adapted and shorter instrument, similar to the original version, comprises five components that include the principal dimensions of HRQoL. Evaluating the School dimension in hospitalized children was considered inappropriate in Chilean public hospitals. The study replicates the relationship found between a child with high pain and low reported HRQoL. CONCLUSIONS: The hospitalization process impacted the children's perceptions of their HRQoL. The reduced version of the Kid-KINDL® was found to be a valid instrument for assessing children's HRQoL in hospital units. PRACTICE IMPLICATIONS: Finding effective ways to measure HRQoL and ultimately mitigate barriers and foster resilience are important clinical and research priorities in the pursuit of HRQoL for hospitalized children and their families.
RESUMO
La astenia relacionada con el cáncer constituye uno de los problemas más frecuentes y con mayor repercusión sobre la calidad de vida en los pacientes oncológicos, y a menudo persiste durante meses o años después de finalizado el tratamiento. Su etiología y fisiopatología son complejas y en la mayoría de los casos no bien conocidas, existiendo múltiples interacciones con otras entidades clínicas relacionadas con el cáncer. En cuanto al abordaje terapéutico, debe ser individualizado, incluyendo el tratamiento de los factores contribuyentes, la educación del paciente, el establecimiento de medidas generales, la administración de fármacos y las intervenciones no farmacológicas, entre las que destaca el ejercicio físico. Con el fin de facilitar la detección y evaluación periódica de la astenia en el paciente oncológico dentro de la práctica clínica habitual, se han desarrollado una serie de herramientas que clásicamente pueden agruparse en dos tipos: unidimensionales y multidimensionales. Sin embargo, una de las cuestiones más importantes de las escalas de evaluación de calidad de vida en general y de la astenia en particular es que su desarrollo y validación se haya llevado a cabo en el contexto sociocultural en que se aplicarán. El cuestionario Perform es el único desarrollado y validado íntegramente en población oncológica española (AU)
Fatigue-related cancer is one of the most frequent problems and one of the symptoms with more impact in the quality of life in patients with cancer; and often it persists during months or years after the treatment has finished. The etiology and physiopathology are complex and, in most of cases, not well known, existing multiple interactions with other clinical entities related with cancer. The therapeutical approach must be individualized, including the treatment of contributing factors, education of the patient, the implementation of general therapeutic reccomendations, pharmacological treatment and non-pharmacologic interventions, specially exercise. With the aim of detect and assess fatigue-related cancer in the clinical practice, some scales and questionnaires have been developed. Classicaly the have been classified as unidimensional and multidimensional questionnaires. However, one of the most important questions regarding the quality of life scales, and in particular fatigue scales, is that it`s design, development and validation must be performed in the social and cultural context of the population in which the questionnaire is going to be implemented. The Perform Questionnaire is the only scale for the assessment of fatigue-related cancer developed and validated completely in a Spanish population (AU)
