[Fatigue, quality of life, and use of healthcare resources in children with complex chronic diseases]
- PMID: 35980248
- PMCID: PMC10130790
- DOI: 10.23938/ASSN.1008
[Fatigue, quality of life, and use of healthcare resources in children with complex chronic diseases]
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.
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.
Conflict of interest statement
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References
-
- 1. Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980-1997. Pediatrics 2000; 106: 205-209. Doi: 10.1542/peds.106.S1.205 - PubMed
- Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980-1997. Pediatrics. 2000;106:205–209. doi: 10.1542/peds.106.S1.205. - DOI - PubMed
-
- 2. Children's Hospital Association. Berry JG, Agrawal RK, Cohen E, Kuo DZ. The Landscape of Medical Care for Children with Medical Complexity. Alexandria (VA): Children's Hospital Association, 2013.
- Children's Hospital Association Berry JG, Agrawal RK, Cohen E, Kuo DZ. The Landscape of Medical Care for Children with Medical Complexity. Alexandria (VA): Children's Hospital Association; 2013.
-
- 3. Kuo DZ, Berry JG, Glader L, Morin MJ, Johaningsmeir S, Gordon J. Health services and health care needs fulfilled by structured clinical programs for children with medical complexity. J Pediatr 2016; 169: 291-296.e1. Doi: 10.1016/j.jpeds.2015.10.010 - PMC - PubMed
- Kuo DZ, Berry JG, Glader L, Morin MJ, Johaningsmeir S, Gordon J. Health services and health care needs fulfilled by structured clinical programs for children with medical complexity. J Pediatr. 2016;169:291–296. doi: 10.1016/j.jpeds.2015.10.010. - DOI - PMC - PubMed
-
- 4. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD., et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 2011; 127: 529-538. Doi: 10.1542/peds.2010-0910 - PMC - PubMed
- Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SKM, Simon TD, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529–538. doi: 10.1542/peds.2010-0910. - DOI - PMC - PubMed
-
- 5. Cohen E, Berry JG, Sanders L, Schor EL, Wise PH. Status Complexicus? The emergence of pediatric complex care. Pediatrics 2018; 141(Suppl 3): S202-211. Doi: 10.1542/peds.2017-1284E - PubMed
- Cohen E, Berry JG, Sanders L, Schor EL, Wise PH. Status Complexicus? The emergence of pediatric complex care. Pediatrics. 2018;141(Suppl 3):S202–S211. doi: 10.1542/peds.2017-1284E. - DOI - PubMed