Health-related quality of life of Spanish children with cystic fibrosis

Quality of Life Research

Volumn 21, Issue 10, 2012, Pages 1837-1845

  Groeneveld, Iris F ^a,b   Sosa, Elena S ^a   Pérez, Margarita ^a   Fiuza Luces, Carmen ^a   Gonzalez Saiz, Laura ^a   Gallardo, Cristian ^a   López Mojares, Luis M ^a   Ruiz, Jonatan R ^c   Lucia, Alejandro ^a  

^a UNIVERSIDAD EUROPEA DE MADRID   (Spain)

^b ACADEMIC MEDICAL CENTER   (Netherlands)

^c KAROLINSKA INSTITUTE   (Sweden)

Author keywords

Children; Cystic fibrosis; Nutritional status; Parents; Physical fitness; Quality of life

Indexed keywords

ADOLESCENT; ARTICLE; BODY MASS; CHILD; CYSTIC FIBROSIS; FEMALE; FITNESS; HEALTH STATUS; HUMAN; MALE; NUTRITIONAL STATUS; PARENT; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SPAIN;

ADOLESCENT; BODY MASS INDEX; CHILD; CYSTIC FIBROSIS; FEMALE; HEALTH STATUS; HUMANS; MALE; NUTRITIONAL STATUS; PARENTS; PHYSICAL FITNESS; QUALITY OF LIFE; QUESTIONNAIRES; SPAIN;

EID: 84872360686     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-0100-8     Document Type: Article

References (34)

1. Cystic Fibrosis Foundation. (2007). Patient registry, annual data report. Bethesda, MD.
2. Ratjen, F., & Doring, G. (2003). Cystic fibrosis. Lancet, 22, 681-689.
3. Beghin, L., Michaud, L., Turck, D., & Gottrand, F. (2005). Technical aspects and relevance of energy expenditure and physical activity assessment in clinical research for cystic fibrosis patients. Archives of Pediatrics, 12(7), 1139-1144.
4. Kriemler, S. (2008). Exercise, physical activity and cystic fibrosis. In N. Armstrong & W. van Mechelen (Eds.), Pediatrics, exercise science and medicine (2nd ed.). Oxford: Oxford University Press.
5. Stallings, V. A., Stark, L. J., Robinson, K. A., Feranchak, A. P., & Quinton, H. (2008). Evidence-based practice recommendations for nutrition-related management of children and adults with cystic fibrosis and pancreatic insufficiency: Results of a systematic review. Journal of the American Dietetic Association, 108(5), 832-839.
6. Wilkes, D. L., Schneiderman, J. E., Nguyen, T., Heale, L., Moola, F., Ratjen, F., et al. (2009). Exercise and physical activity in children with cystic fibrosis. Paediatric Respiratory Reviews, 10(3), 105-109.
7. Abbott, J., Hart, A., Havermans, T., Matossian, A., Goldbeck, L., Barreto, C., et al. (2011). Measuring health-related quality of life in clinical trials in cystic fibrosis. Journal of Cystic Fibrosis, 10(Suppl 2), S82-S85.
8. Sawicki, G. S., Rasouliyan, L., McMullen, A. H., Wagener, J. S., McColley, S. A., Pasta, D. J., et al. (2011). Longitudinal assessment of health-related quality of life in an observational cohort of patients with cystic fibrosis. Pediatric Pulmonology, 46(1), 36-44.
9. Olveira, G., Olveira, C., Gaspar, I., Cruz, I., Dorado, A., Perez-Ruiz, E., et al. (2010). Validation of the Spanish version of the revised CFQ (CFQ-R) in adolescents and adults (CFQ-R 14+ Spain). Arcivos de Bronconeumologia, 46, 165-175.
10. Gruet, M., Abbiss, C., Mely, L., Brisswalter, J., & Vallier, J. M. (2011). Health related quality of life in adults with cystic fibrosis: The impact of exercise tolerance. Journal of Cystic Fibrosis, 9(Suppl 1), S68.
11. Arrington-Sanders, R., Yi, M. S., Tsevat, J., Wilmott, R. W., Mrus, J. M., Britto, M. T. (2006). Gender differences in healthrelated quality of life of adolescents with cystic fibrosis. Health and Quality of Life Outcomes, 24, 4-5.
12. Ernst, M. M., Johnson, M. C., & Stark, L. J. (2010). Developmental and psychosocial issues in cystic fibrosis. Child and Adolescent Psychiatric Clinics of North America, 19(2), 263-283.
13. Martinez-Gomez, D., Ortega, F. B., Ruiz, J. R., Vicente-Rodriguez, G., Veiga, O. L., Widhalm, K., et al. (2011). Excessive sedentary time and low cardiorespiratory fitness in European adolescents: the HELENA study. Archives of Disease in Childhood, 96(3), 240-246.
14. Cole, T. J., Bellizzi, M. C., Flegal, K. M., & Dietz, W. H. (2000). Establishing a standard definition for child overweight and obesity worldwide: International survey. British Medical Journal, 320(7244), 1240-1243.
15. Eiser, C., & Morse, R. (2001). Can parents rate their child's health-related quality of life? Results of a systematic review. Quality of Life Research, 10, 347-357.
16. Havermans, T., Vreys, M., Proesmans, M., & De Boeck, C. (2006). Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child: Care, Health and Development, 32(1), 1-7.
17. Center for Disease Control and Prevention. (2000). Clinical Growth Charts. http://www.cdc.gov/growthcharts/clinical-charts. htm. Accessed April 25, 2011.
18. Jackson, A. S., & Pollock, M. L. (1985). Practical assessment of body composition. Physician and Sports Medicine, 13, 76-90.
19. Ortega, F. B., Ruiz, J. R., Hurtig-Wennlof, A., Vicente-Rodriguez, G., Rizzo, N. S., Castillo, M. J., et al. (2010). Cardiovascular fitness modifies the associations between physical activity and abdominal adiposity in children and adolescents: The European Youth Heart Study. British Journal of Sports Medicine, 44(4), 256-262.
20. American Thoracic Society. (1987). Standardization of spirometry-1987 update. Official statement of American Thoracic Society. Respiratory Care, 32(11), 1039-1060.
21. San Juan, A. F., Fleck, S. J., Chamorro-Vina, C., Mate-Munoz, J. L., Moral, S., Perez, M., et al. (2007). Effects of an intrahospital exercise program intervention for children with leukemia. Medicine and Science in Sports and Exercise, 39(1), 13-21.
22. Gocha Marchese, V., Chiarello, L. A., & Lange, B. J. (2003). Strength and functional mobility in children with acute lymphoblastic leukemia. Medical and Pediatric Oncology, 40(4), 230-232.
23. Henry, B., Aussage, P., Grosskopf, C., & Goehrs, J. M. (2003). Development of the cystic fibrosis questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Quality of Life Research, 12, 63-76.
24. Modi, A. C., & Quittner, A. L. (2003). Validation of a diseasespecific measure of health-related quality of life for children with cystic fibrosis. Journal of Pediatric Psychology, 28, 535-546.
25. Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159-174.
26. Riddoch, C. J., Bo, A. L., Wedderkopp, N., Harro, M., Klasson-Heggebo, L., Sardinha, L. B., et al. (2004). Physical activity levels and patterns of 9- and 15-yr-old European children. Medicine and Science in Sports and Exercise, 36(1), 86-92.
27. Patterson, J. M., Wall, M., Berge, J., & Milla, C. (2009). Associations of psychosocial factors with health outcomes among youth with cystic fibrosis. Pediatric Pulmonology, 44(1), 46-53.
28. Stephenson, A., Hux, J., Tullis, E., Austin, P. C., Corey, M., & Ray, J. (2011). Higher risk of hospitalization among females with cystic fibrosis. Journal of Cystic Fibrosis, 10(2), 94-99.
29. Poulsen, A. A., Desha, L., Ziviani, J., Griffiths, L., Heaslop, A., Khan, A., et al. (2011). Fundamental movement skills and selfconcept of children who are overweight. International Journal of Pediatric Obesity, 6(2-2), e464-e471.
30. Truby, H., & Paxton, A. S. (2001). Body image and dieting behavior in cystic fibrosis. Pediatrics, 107(6), E92.
31. Hegarty, M., Macdonald, J., Watter, P., & Wilson, C. (2009). Quality of life in young people with cystic fibrosis: Effects of hospitalization, age and gender, and differences in parent/child perceptions. Child: Care, Health and Development, 35(4), 462-468.
32. Foster, C. L., Bryon, M., & Eiser, C. (1998). Correlates of wellbeing in mothers of children and adolescents with cystic fibrosis. Child: Care, Health and Development, 24(1), 41-56.
33. CPDR Working Group. (2011). Canadian cystic fibrosis patient registry report 2009. Canada: Toronto.
34. García Hernández, G., Antelo, C., Maiz, L., Girón, R. M., Salcedo, A., Mart́nez Gimeno, R., et al. (2004). Pacientes con fibrosis qústica atendidos en las unidades de fibrosis qústica de la Comunidad de Madrid; estudio transversal de 387 casos. Medica Clinica (Barc), 122(18), 698-700.