Fatigue, quality of life, and use of healthcare resources in children with complex chronic diseases
DOI:
https://doi.org/10.23938/ASSN.1008Keywords:
Fatigue, Quality of life, Use of services, Chronic disease, ChildAbstract
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.
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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. https://doi.org/10.1542/peds.106.S1.205
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. enlace
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. https://doi.org/10.1016/j.jpeds.2015.10.010
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. https://doi.org/10.1542/peds.2010-0910
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. https://doi.org/10.1542/peds.2017-1284E
INGERSKI LM, MODI AC, HOOD KK, PAI AL, ZELLER M, PIAZZA-WAGGONER C, et al. Health-Related quality of life across pediatric chronic conditions. J Pediatr 2010; 156: 639-644. https://doi.org/10.1016/j.jpeds.2009.11.008
O’CONNELL C, STOKES EK. Fatigue – concepts for physiotherapy management and measurement. Phys Ther Rev 2007; 12: 314-323. https://doi.org/10.1179/108331907X223100
CRICHTON A, KNIGHT S, OAKLEY E, BABL FE, ANDERSON V. Fatigue in child chronic health conditions: a systematic review of assessment instruments. Pediatrics 2015; 135: e1015-1031. https://doi.org/10.1542/peds.2014-2440
MCCABE M. Fatigue in children with long-term conditions: an evolutionary concept analysis. J Adv Nurs 2009; 65: 1735-1745. https://doi.org/10.1111/j.1365-2648.2009.05046.x
AMERINGER S, ELSWICK RK, SMITH W. Fatigue in adolescents and young adults with sickle cell disease: biological and behavioral correlates and health-related quality of life. J Pediatr Oncol Nurs 2014; 31: 6-17. https://doi.org/10.1177/1043454213514632
SILVA N, PEREIRA M, OTTO C, RAVENS-SIEBERER U, CANAVARRO MC, BULLINGER M. Do 8- to 18-year-old children/adolescents with chronic physical health conditions have worse health-related quality of life than their healthy peers? a meta-analysis of studies using the KIDSCREEN questionnaires. Qual Life Res 2019; 28: 1725-1750. https://doi.org/10.1007/s11136-019-02189-7
M BT, A LC, W VJ. 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 PedsQLTM 4.0 Generic Core Scales. Health Qual Life Outcomes 2007; 5: 43. https://doi.org/10.1186/1477-7525-5-43
Observatorio de la Infancia y Adolescencia de Andalucía. Datos de población municipal 2015: Granada. Sevilla: Junta de Andalucía, 2016. https://www.observatoriodelainfancia.es/ficherosoia/documentos/4890_d_IPM_2015_GRANADA.pdf
DOMINGO-SALVANY A, BACIGALUPE A, CARRASCO JM, ESPELT A, FERRANDO J, BORRELL C. Proposals for social class classification based on the Spanish national classification of occupations 2011 using neo-Weberian and neo-Marxist approaches. Gac Sanit 2013; 27: 263-272. https://doi.org/10.1016/j.gaceta.2012.12.009
KLASSEN AF, ANTHONY SJ, KHAN A, SUNG L, KLAASSEN R. Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review. Support Care Cancer 2011; 19: 1275-1287. https://doi.org/10.1007/s00520-011-1193-x
VARNI JW, SEID M, KURTIN PS. PedsQLTM 4.0: Reliability and validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in healthy and patient populations. Med Care 2001; 39: 800-812. https://doi.org/10.1097/00005650-200108000-00006
GONZÁLEZ-GIL T, MENDOZA-SOTO A, ALONSO-LLORET F, CASTRO-MURGA R, POSE-BECERRA C, MARTÍN-ARRIBAS MC. Versión española del cuestionario de calidad de vida para niños y adolescentes con cardiopatías (PedsQL TM). Rev Esp Cardiol 2012; 65: 249-257. https://doi.org/10.1016/j.recesp.2011.10.010
Peds FACIT-F: Pediatric Functional Assessment of Chronic Illness Therapy-Fatigue. https://www.facit.org/measures/peds-FACIT-F
LAI JS, CELLA D, KUPST MJ, HOLM S, KELLY ME, BODE RK et al. Measuring fatigue for children with cancer: development and validation of the pediatric Functional Assessment of Chronic Illness Therapy-Fatigue (pedsFACIT-F). J Pediatr Hematol Oncol 2007; 29: 471-479. https://doi.org/10.1097/MPH.0b013e318095057a
BEKTAS İ, KIR M, YILDIZ K, GENÇ Z, BEKTAS M, ÜNAL N. Symptom Frequency in children with congenital heart disease and parental care burden in predicting the quality of life of parents in Turkey. J Pediatr Nurs 2020; 53: e211-216. https://doi.org/10.1016/j.pedn.2020.04.01
SHIPPEE ND, SHAH ND, MAY CR, MAIR FS, MONTORI VM. Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol 2012; 65: 1041-1051. https://doi.org/10.1016/j.jclinepi.2012.05.005
BADAWY SM, THOMPSON AA, HOLL JL, PENEDO FJ, LIEM RI. Healthcare utilization and hydroxyurea adherence in youth with sickle cell disease. Pediatr Hematol Oncol 2018; 35: 297-308. https://doi.org/10.1080/08880018.2018.1505988
CHENG L, WANG Y, DUAN M, WANG J, WANG Y, HUANG H et al. Self-reported fatigue in chinese children and adolescents during cancer treatment. J Pediatr Oncol Nurs 2021; 38: 262-270. https://doi.org/10.1177/1043454221992304
KOHLI R, CHATURVEDI S. Epidemiology and Clinical manifestations of immune thrombocytopenia. Hamostaseologie 2019; 39: 238-249. https://doi.org/10.1055/s-0039-1683416
PÉREZ-ARDANAZ B, PELÁEZ-CANTERO MJ, MORALES-ASENCIO JM, VELLIDO-GONZÁLEZ C, GÓMEZ-GONZÁLEZ A, LEÓN-CAMPOS Á et al. Socioeconomic Factors and quality of life perceived by parents and children with complex chronic conditions in Spain. Children 2021; 8: 931. https://doi.org/10.3390/children8100931
HO KY, LI WHC, LAM KWK, WEI X, CHIU SY, CHAN CFG et al. Relationships among fatigue, physical activity, depressive symptoms, and quality of life in Chinese children and adolescents surviving cancer. Eur J Oncol Nurs 2019; 38: 21-27. https://doi.org/10.1016/j.ejon.2018.11.007
PINQUART M. Health-related quality of life of young people with and without chronic conditions. J Ped Psychol 2020; 45: 780-792. https://doi.org/10.1093/jpepsy/jsaa052
STORM VAN’S GRAVESANDE K, BLASCHEK A, CALABRESE P, ROSTÁSY K, HUPPKE P, KESSLER JJ et al. Fatigue and depression predict health-related quality of life in patients with pediatric-onset multiple sclerosis. Mult Scler Relat Disord 2019; 36: 101368. https://doi.org/10.1016/j.msard.2019.08.010
DI BATTISTA A, SOO C, CATROPPA C, ANDERSON V. Quality of life in children and adolescents post-TBI: a systematic review and meta-analysis. J Neurotrauma 2012; 29: 1717-1727. https://doi.org/10.1089/neu.2011.2157
HALL CA, DONZA C, MCGINN S, RIMMER A, SKOMIAL S, TODD E et al. Health-related quality of life in children with chronic illness compared to parents: a systematic review. Pediatr Phys Ther 2019; 31: 315-322. https://doi.org/10.1097/PEP.0000000000000638
THYGESEN LC, CHRISTIANSEN T, GARCÍA-ARMESTO S, ANGULO-PUEYO S, MARTÍNEZ-LIZAGA L, BERNAL-DELGADO E. Potentially avoidable hospitalizations in five European countries in 2009 and time trends from 2002 to 2009 based on administrative data. Eur J Pub Health 2015; 25 (Suppl 1): 35-43. https://doi.org/10.1093/eurpub/cku227
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