5
views
0
recommends
+1 Recommend
1 collections
    0
    shares
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Fatiga, calidad de vida y utilización de recursos sanitarios en niños con enfermedades crónicas complejas Translated title: Fatigue, quality of life and health resource utilisation in children with complex chronic diseases

      research-article

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Resumen

          Fundamento

          Nuestro objetivo fue determinar la fatiga en niños con enfermedades crónicas complejas (NECC) y analizar su asociación con características clínicas, sociodemográficas, utilización de servicios de salud y calidad de vida.

          Material y método

          Estudio transversal realizado en NECC atendidos en un hospital terciario durante 2016. Se determinaron la fatiga (cuestionario PedsFacit-F) y la calidad de vida (cuestionario PedsQL), y se recogieron las variables uso de recursos sanitarios, grupo de enfermedad, tiempo con la enfermedad, y nivel de estudios y ocupación profesional de los progenitores. Se elaboró un modelo de regresión múltiple para predecir el uso de recursos.

          Resultados

          Se incluyeron 70 niños, edad media 10,5 años (rango: 8-17), 41,4% niñas; la enfermedad oncológica fue la más frecuente (28,6%). El uso anual de recursos sanitarios (38,86; DE: 30,73) aumentó con la fatiga (r= -0,292; p= 0,015). Las enfermedades oncológicas causaron más fatiga (24,9; DE: 10,7) que otras patologías y las cardiológicas menos (44,5; DE: 7,9). La calidad de vida percibida por NECC (20,6; DE: 16,5) correlacionó directa y significativamente (p <0,001) con la de sus progenitores (22,8; DE: 16,8); ambas se correlacionaron con la fatiga (r= 0,528 y r= 0,441; p <0,0001). El modelo de regresión lineal mostró que el efecto ajustado de mayor fatiga (menor puntuación), menor tiempo con la enfermedad y mayor nivel de estudios de la madre predijeron mayor uso de recursos de salud.

          Conclusión

          Los NECC con mayor fatiga hacen mayor uso de los recursos sanitarios, y perciben una peor calidad de vida, aspectos que deberían tenerse en cuenta a la hora de prestar atención a esta población.

          Abstract

          Background

          The objective was to assess fatigue in children with complex chronic diseases (CCCDs) and analyze its relationship with clinical and sociodemographic characteristics, use of healthcare services, and quality of life (QoL).

          Methods

          Cross-sectional study carried out in CCCDs attended in a tertiary hospital during 2016. Fatigue (PedsFacit-F questionnaire) and quality of life (PedsQL) were determined, and the following variables were registered: use of health resources, disease group, time with disease, and educational level and type of employment of the parents. A multiple regression model was developed to predict the use of healthcare resources.

          Results

          Seventy children were included in this study; mean age 10.5 years (range: 8-17), 41.4% girls, and cancer was the most frequent group disease (28.6%). Annual use of healthcare resources (38.86; SD: 30.73) increased with fatigue (r= -0.292; p= 0.015). Higher levels of fatigue were determined for children with cancer (24.9; SD: 10.7) in comparison to other pathologies, while lower levels were found for heart diseases (44.5; SD: 7.9). The QoL perceived by CCCDs (20.6; SD: 16.5) directly correlated (p <0.001) with that of their parents (22.8; SD: 16.8); a correlation with fatigue was seen in both cases (r= 0.528 and r= 0.441; p <0.0001). The adjusted effect of higher levels of fatigue (lower scores), lower length of disease duration, and higher level of education of the mother, predicted greater use of healthcare resources.

          Conclusion

          CCCDs with higher fatigue levels use healthcare resources more often and perceive a worse QoL. This should be considered when providing care to this population.

          Related collections

          Most cited references33

          • Record: found
          • Abstract: found
          • Article: not found

          PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations.

          The PedsQL (Pediatric Quality of Life Inventory) (Children's Hospital and Health Center, San Diego, California) is a modular instrument for measuring health-related quality of life (HRQOL) in children and adolescents ages 2 to 18. The PedsQL 4.0 Generic Core Scales are multidimensional child self-report and parent proxy-report scales developed as the generic core measure to be integrated with the PedsQL Disease-Specific Modules. The PedsQL 4.0 Generic Core Scales consist of 23 items applicable for healthy school and community populations, as well as pediatric populations with acute and chronic health conditions. The 4 PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School) were administered to 963 children and 1,629 parents (1,677 subjects accrued overall) recruited from pediatric health care settings. Item-level and scale-level measurement properties were computed. Internal consistency reliability for the Total Scale Score (alpha = 0.88 child, 0.90 parent report), Physical Health Summary Score (alpha = 0.80 child, 0.88 parent), and Psychosocial Health Summary Score (alpha = 0.83 child, 0.86 parent) were acceptable for group comparisons. Validity was demonstrated using the known-groups method, correlations with indicators of morbidity and illness burden, and factor analysis. The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales. The results demonstrate the reliability and validity of the PedsQL 4.0 Generic Core Scales. The PedsQL 4.0 Generic Core Scales may be applicable in clinical trials, research, clinical practice, school health settings, and community populations.
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            Children with medical complexity: an emerging population for clinical and research initiatives.

            Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system.
              Bookmark
              • Record: found
              • Abstract: found
              • Article: found
              Is Open Access

              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.
                Bookmark

                Author and article information

                Journal
                An Sist Sanit Navar
                An Sist Sanit Navar
                assn
                Anales del Sistema Sanitario de Navarra
                Gobierno de Navarra. Departamento de Salud
                1137-6627
                2340-3527
                18 August 2022
                May-Aug 2022
                : 45
                : 2
                : e1008
                Affiliations
                [1 ] originalDepartamento Enfermería. Facultad de Ciencias de la Salud. Universidad de Málaga. Málaga. España. normalizedUniversidad de Málaga orgdiv2Departamento Enfermería orgdiv1Facultad de Ciencias de la Salud orgnameUniversidad de Málaga Málaga, Spain
                [2 ] originalInstituto de Investigación Biomédica de Málaga (IBIMA). Málaga. España. orgnameInstituto de Investigación Biomédica de Málaga Málaga, España
                [3 ] originalHospital Materno-Infantil. Hospital Regional Universitario de Málaga. Málaga. España. orgdiv1Hospital Materno-Infantil orgnameHospital Regional Universitario de Málaga Málaga, España
                Author notes
                [Correspondencia ] María José Peláez-Cantero. Hospital Materno-Infantil, Hospital Regional Universitario de Málaga, Avda. Arroyo de los Ángeles, s/n, 29011, Málaga, Málaga, España. E-mail: pelaez_mariajose@ 123456hotmail.com

                Conflictos de intereses: Los autores declaran no tener conflictos de intereses.

                Article
                10.23938/ASSN.1008
                10130790
                35980248
                67964ef1-6bb6-423f-beb1-1ccc879b31c9

                Este es un artículo publicado en acceso abierto bajo una licencia Creative Commons

                History
                : 14 December 2021
                : 07 March 2022
                : 26 May 2022
                Page count
                Figures: 1, Tables: 3, Equations: 0, References: 31, Pages: 0
                Categories
                Artículos Originales

                fatiga,calidad de vida,utilización de recursos,enfermedad crónica,niño,fatigue,quality of life,use of services,chronic disease,child

                Comments

                Comment on this article