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      Calidad de vida en el paciente pediátrico con Enfermedad Renal Crónica Translated title: Quality of life in paediatric patients with Chronic Renal Disease

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          Abstract

          Objetivos: Conocer la producción científica en los últimos seis años sobre la calidad de vida de los pacientes pediátricos con enfermedad renal crónica. Métodos: Las bases de datos consultadas fueron PubMed, Scopus, Science Direct, ProQuest, Web of Knowledge y SciVerse. Sólo se incluyeron los artículos científicos escritos en inglés o español y que tuvieran un diseño de corte transversal. Las principales variables que afectan a la calidad de vida eran analizadas, entre las que destacaba la modalidad terapéutica. Además, se estudió los distintos cuestionarios de medición de la calidad de vida, así como las diferencias en la percepción entre los pacientes y sus familias. Resultados: Trece documentos fueron encontrados: sólo uno de ellos empleó un cuestionario específico para este tipo de pacientes, diez cuestionarios generales y los dos documentos que empleaban los dos tipos. Los cuestionarios generales estudiaban la variable de "modalidad terapéutica" que se emplea, así como otros factores que afectan a la calidad de vida tales como trastornos del sueño y mentales; por otro lado, el cuestionario específico sólo estudió la variable "modalidad terapéutica". En los dos estudios que emplean ambos tipos de cuestionarios la principal variable de estudio es la "modalidad terapéutica" y se permite una comparación entre los dos tipos de cuestionarios. La mayor parte de los estudios emplean un informe parental para determinar la calidad de vida del paciente pediátrico con enfermedad renal crónica. Conclusiones: Los pacientes pediátricos con enfermedad renal crónica tienen una peor calidad de vida que los pacientes pediátricos con otras enfermedades crónicas tales como diabetes. Los niños trasplantados o en tratamiento conservador poseen una mejor calidad de vida que los sometidos a tratamiento sustitutivo.

          Translated abstract

          Aims: To look for the scientific literature in the last six years about the quality of life of pediatric patients with chronic kidney disease. Methods: The next databases were used: PubMed, Scopus, Science Direct, ProQuest, Web of Knowledge and SciVerse. Only scientific papers written either in English or Spanish as well as having a cross-sectional design were considered. The main variables affecting the quality of life, amongst which stand out therapeutics, were analyzed. Also, the different ways for measuring the quality of life as well as differences in its perception between patients and their families were studied. Results: Thirteen papers were found: only one of them used specifically prepared questionnaire for this type of patients, ten used general questionnaires and the last two papers mixed both types. The general questionnaires studied the variable "therapeutic modality" used as well as other factors affecting the quality of life such as dream and mental disorders; on the other side, the specific questionnaire only studied the variable "therapeutic modality". The cases in which both types of questionnaires were used allowed a comparison between the two approaches, being "therapeutic modality" the main variable to be considered. Most papers included a family report for evaluating the quality of life. Conclusions: Pediatric patients with chronic kidney disease have a worse quality of life than people with other chronic diseases such as, for instant, diabetes. Children either transplanted or under a conservative treatment enjoyed a better quality of ife that those subjected to dialysis.

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          Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL™ 4.0 Generic Core Scales

          Background Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The objectives of this study were to compare generic HRQOL across ten chronic disease clusters and 33 disease categories/severities from the perspectives of patients and parents. Comparisons were also benchmarked with healthy children data. Methods The analyses were based on over 2,500 pediatric patients from 10 physician-diagnosed disease clusters and 33 disease categories/severities and over 9,500 healthy children utilizing the PedsQL™ 4.0 Generic Core Scales. Patients were recruited from general pediatric clinics, subspecialty clinics, and hospitals. Results Pediatric patients with diabetes, gastrointestinal conditions, cardiac conditions, asthma, obesity, end stage renal disease, psychiatric disorders, cancer, rheumatologic conditions, and cerebral palsy self-reported progressively more impaired overall HRQOL than healthy children, respectively, with medium to large effect sizes. Patients with cerebral palsy self-reported the most impaired HRQOL, while patients with diabetes self-reported the best HRQOL. Parent proxy-reports generally paralleled patient self-report, with several notable differences. Conclusion The results demonstrate differential effects of pediatric chronic conditions on patient HRQOL across diseases clusters, categories, and severities utilizing the PedsQL™ 4.0 Generic Core Scales from the perspectives of pediatric patients and parents. The data contained within this study represents a larger and more diverse population of pediatric patients with chronic conditions than previously reported in the extant literature. The findings contribute important information on the differential effects of pediatric chronic conditions on generic HRQOL from the perspectives of children and parents utilizing the PedsQL™ 4.0 Generic Core Scales. These findings with the PedsQL™ have clinical implications for the healthcare services provided for children with chronic health conditions. Given the degree of reported impairment based on PedsQL™ scores across different pediatric chronic conditions, the need for more efficacious targeted treatments for those pediatric patients with more severely impaired HRQOL is clearly and urgently indicated.
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            CALIDAD DE VIDA RELACIONADA CON LA SALUD: ASPECTOS CONCEPTUALES

            Se revisa la importancia del concepto de calidad de vida relacionado con la salud (CVRS) como un aporte fundamental en la evaluación de resultados en salud, al haberse tornado insuficientes las medidas tradicionales de morbimortalidad y expectativa de vida. Se destaca la importancia de tomar en cuenta la percepción del paciente, sus deseos y motivaciones en el proceso de toma de decisiones en salud así como en la evaluación de la calidad de la asistencia sanitaria. Se discuten los aspectos conceptuales del constructo "CVRS", sus alcances y sus limitaciones, así como su desarrollo histórico a partir de tres tradiciones básicas, la investigación del concepto de felicidad, en la psicología, la de indicadores sociales en la sociología y la investigación del estado de salud en las ciencias médicas. Se señala asimismo la relatividad histórico-cultural del concepto así como la variabilidad de las prioridades en distintos momentos de la vida. Se expone finalmente el marco conceptual desde el que trabajamos en el Departamento de Psicología Médica de la Facultad de Medicina de la Universidad de la República Oriental del Uruguay así como un modelo conceptual, que debería valorarse empíricamente permitiendo el diseño científico de intervenciones destinadas a promover el bienestar psicosocial, mejorando la calidad de vida de los pacientes.
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              Calidad de vida relacionada con la salud: aspectos conceptuales

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                Author and article information

                Contributors
                Role: ND
                Journal
                enefro
                Enfermería Nefrológica
                Enferm Nefrol
                Sociedad Española de Enfermería Nefrológica (Madrid, Madrid, Spain )
                2254-2884
                2255-3517
                December 2012
                : 15
                : 4
                : 243-254
                Affiliations
                [01] Córdoba orgnameUniversidad de Córdoba
                Article
                S2254-28842012000400002
                10.4321/S2254-28842012000400002
                02c208f4-42c0-47eb-9539-7adff034888c

                This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

                History
                : 07 September 2012
                : 20 November 2012
                : 30 September 2012
                Page count
                Figures: 0, Tables: 0, Equations: 0, References: 28, Pages: 12
                Product

                SciELO Spain


                Calidad de vida,Niño,Enfermedad renal crónica,Paciente pediátrico,Quality of life,Child,Chronic kidney diesase,Pediatrics

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