Abstract
Recent research has shown a growing interest in the assessment of Health-Related Quality of Life (HRQoL) in children and adolescents with chronic health conditions as a subjective health outcome. However, HRQol in the pediatric population with cerebral palsy (CP) is still understudied, with scarce research assessing self-reported HRQoL and its links with other psychological variables. The present research examined self-reported HRQoL in 64 Portuguese children and adolescents with CP. Results showed that higher HRQoL (generic and specific to chronic health conditions) was significantly related to lower levels of psychopathological symptoms, higher levels of prosocial behavior and a lower need for social activities. Gender moderated the link between prosocial behavior and HRQoL (specific to chronic conditions), which was significant for girls but not for boys. Finally, the need for social activities mediated the associations between psychopathology symptoms and both measures of HRQoL.
Similar content being viewed by others
Notes
The term children was chosen when referring to this study’s sample which includes both children and adolescents.
References
Almeida, T., & Sampaio, F. M. (2005). Stress e suporte social em familiares de pessoas com Paralisia Cerebral. Psicologia, Saúde & Doenças., 8(1), 145–151.
Anderson, E. M., & Clarke, L. (1982). Disability in adolescence. London: Methuen.
Bax, M., & Tydeman, C. (2010). The european cerebral palsy study. London: The Castang Foundation.
Bax, M., Goldstein, M., Rosenbaum, P., Leviton, A., Paneth, N., Dan, B., et al. (2005). Proposed definition and classification of cerebral palsy. Developmental Medicine & Child Neurology, 47, 571–576.
Bullinger, M., Petersen, C., Schmidt, S., & DISABKIDS group. (2002). European paediatric health-related quality of life assessment. Quality of Life Newsletter, 29, 4–5.
Bullinger, M., Schmidt, S., Petersen, C., & Ravens-Sieberer, U. (2006). Quality of life-evaluation criteria for children with chronic conditions in medical care. Journal of Public Health, 14, 343–355. doi:10.1007/s10389-006-0066-0.
Caprara, G. V., Barbaranelli, C., Pastorelli, C., Bandura, A., & Zimbardo, P. (2000). Prosocial foundations of children’s academic achievement. Psychological Science, 11(4), 302–306.
Carona, C., Bullinger, M., and Canavarro, M. C. (2011). Assessing paediatric health-related quality of life within a cross-cultural perspective: semantic and pilot validation study of the Portuguese versions of DISABKIDS-37. Vulnerable Children and Youth Studies.
Carlsson, M., Olsson, I., Hagberg, G., & Beckung, E. (2008). Behaviour in children with cerebral palsy with and without epilepsy. Developmental Medicine & Child Neurology, 10(50), 784–789.
Davis, E., Shelly, A., Waters, E., Mackinnon, A., Reddihough, D., Boyd, R., et al. (2009). Quality of life of adolescents with cerebral palsy: perspectives of adolescents and parents. Developmental Medicine & Child Neurology, 51, 193–199. doi:10.1111/j.1469-8749.2008.03194.x.
Davis, E., Shelly, A., Waters, E., & Davern, M. (2010). Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments. Developmental Medicine and Child Neurology, 52(2), 174–180.
Dickinson, H. O., Parkinson, K. N., Ravens-Sieberer, U., Schirripa, G., Arnaud, U. T. C., Beckung, E., et al. (2007). Self-reported quality of life of 8–12 year-old children with cerebral palsy: a cross-sectional European study. Lancet, 369, 2171–2178.
East, P. L., Lerner, R. M., Lerner, J. V., Talwar-Soni, R., Ohannessian, C. M., & Jacobson, L. P. (1992). Early adolescent-peer group fit, peer relations, and psychosocial competence: a short term longitudinal study. Journal of Early Adolescence, 12, 132–152.
Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life?: Results from a systematic review. Quality of Life Research, 10, 347–357.
European DISABKIDS Group. (2006). The DISABKIDS questionnaires for children with chronic conditions: Handbook. Lengerich: Pabst Science Publishers.
Fleitlich, B., Loureiro, M., Fonseca, A., and Gaspar, M. (2005). Questionário de Capacidades e de Dificuldades (SDQ-Por). Retrived on February 2011 on http://www.sdqinfo.org.
Galambos, N. L. (2004). Gender and gender role development in adolescence. In R. Lerner & L. Steinberg (Eds.), Handbook of adolescent psychology (pp. 233–262). New Jersey: Wiley.
Gaspar, T., & Matos, M. G. (Eds.). (2008). Qualidade de vida em crianças e adolescentes: Versão portuguesa dos instrumentos KIDSCREEN-52. Cruz Quebrada: Aventura Social e Saúde.
Gaspar, T., Ribeiro, J. L. P., Matos, M. G., Leal, I., & Ferreira, A. (2009). Psychometric properties of a brief version of the escala de satisfação com o suporte social for children and adolescents. The Spanish Journal of Psychology, 1(12), 360–372.
Gates, P., Otsuka, N., Sanders, J., & Mcgee-Brown, J. (2010). Functioning and health-related quality of life of adolescents with cerebral palsy: self versus parent perspectives. Developmental Medicine and Child Neurology, 52(9), 843–849. doi:10.1111/j.1469-8749.2010.03666.x.
Goodman, R. (1997). The strengths and difficulties questionnaire: a research note. Journal of Child Psychology, Psychiatry, and Allied Disciplines, 38(5), 581–586.
Goodman, R., & Graham, P. (1996). Psychiatric problems in children with hemiplegia: cross sectional epidemiological survey. British Medical Journal, 312, 1065–1069.
Hauser-Cram, P., & Krauss, M. W. (2004). Adolescents with developmental disabilities and their families. In R. Lerner & L. Steinberg (Eds.), Handbook of adolescent psychology (pp. 697–719). New Jersey: Wiley.
Henriques, A., & Lima, M. (2003). Estados afectivos, percepção do risco e do suporte social: a familiaridade e a relevância como moderadores nas respostas com o estado de espírito. Análise Psicológica, 3(21), 375–392.
Ivan, T. M., & Glazer, J. P. (1994). Quality of life in pediatric psychiatry. Child and Adolescent Psychiatric Clinics of North America, 3, 599–611.
Johnson, A. (2002). Prevalence and characteristics of children with Cerebral Palsy in Europe. Developmental Medicine & Child Neurology, 44, 633–640.
Johnson, M. K., Beebe, T., Mortimer, J. T., & Snyder, M. (1998). Volunteerism in adolescence: a process perspective. Journal of Research on Adolescence, 8, 309–332.
Jose, P. E. (2008). ModGraph-I: A programme to compute cell means for the graphical display of moderational analyses: The internet version, Version 2.0. Victoria University of Wellington, Wellington, New Zealand. Retrieved on February 2011 from http://www.victoria.ac.nz/psyc/staff/paul-jose-files/modgraph/modgraph.php.
Lim, M. S. Y., & Wong, C. P. (2009). Impact of cerebral palsy on the quality of life in patients and their families. Neurology Asia, 14, 27–33.
Livingston, M. H., Rosenbaum, P. L., Russell, D. J., & Palisano, R. J. (2007). Quality of life among adolescents with cerebral palsy: what does the literature tell us? Developmental Medicine & Child Neurology, 49, 225–231.
MacKinnon, D. P., Lockwood, C. M., & Williams, J. (2004). Confidence limits for the indirect effect: distribution of the product and resampling methods. Multivariate Behavioral Research, 39, 99–128.
McDermott, S., Coker, A. L., Mani, S., Krishnaswami, S., Nagle, R. J., Barnett-Queen, L. L., et al. (1996). A population-based analysis of behavior problems in children with cerebral palsy. Journal of Pediatric Psychology, 21, 447–463.
Moos, R. H. (2002). Life stressors, social resources, and coping skills in youth: applications to adolescents with chronic disorders. Journal of adolescent health, 30, 22–29.
Morales, N. M. O. (2005). Avaliação transversal da Qualidade de Vida em crianças e adolescentes com Paralisia Cerebral por meio de um instrumento genérico (CHQ-PF50). Dissertação apresentada ao programa de Pós-Graduação em Ciências da Saúde da Faculdade de Medicina da Universidade Federal de Uberlândia.
Palisano, R., Rosenbaum, P., Bartlett, D., & Livingston, M. (2008). Content validity of the expanded and revised gross motor function classification system. Developmental Medicine & Child Neurology, 50(10), 744–750.
Parkes, J., & McCusker, C. (2008). Common psychological problems in cerebral palsy. Paediatrics and child health, 18(9), 427–431.
Parkes, J., White-Koning, M., Dickinson, H. O., Thyen, U., Arnaud, C., Beckung, E., et al. (2008). Psychological problems in children with cerebral palsy: a cross-sectional European study. Journal of Child Psychology & Psychiatry, 49(4), 405–413.
Parkes, J., McCullough, N., & Madden, A. (2010). To what extent do children with cerebral palsy participate in everyday life situations? Health and Social Care in the Community, 18(3), 304–315.
Preacher, K., & Hayes, A. (2004). SPSS and SAS procedures for estimating indirect effects in simple mediation models. Behavior Research Methods, Instruments, & Computers, 36(4), 717–731.
Preacher, K., & Hayes, A. (2008). Asymptotic and resampling strategies for assessing and comparing indirect effects in multiple mediator models. Behavior Research Methods, 40(3), 879–891.
Pursell, G. R., Laursen, B., Rubin, K. H., Booth-LaForce, C., & Rose-Krasnor, L. (2008). Gender differences in patterns of association between prosocial behavior, personality, and externalizing problems. Journal of Research in Personality, 42(2), 472–481.
Ravens-Sieberer, U., Erhart, M., Rajmil, L., Herdman, M., Auquier, P., Bruil, J., et al. (2010). Reliability, construct and criterion validity of the KIDSCREEN-10 score: a short measure for children and adolescents’ well-being and health-related quality of life. Quality of Life Research, 10(19), 1487–1500. doi:10.1007/s11136-010-9706-5.
Rockhill, C. M., Stoep, A. V., McCauley, E., & Katon, W. J. (2009). Social competence and social support as mediators between comorbid depressive and conduct problems and functional outcomes in middle school children. Journal of Adolescence, 32, 535–553. doi:10.1016/j.adolescence.2008.06.011.
Russo, R. N., Goodwin, E. J., Miller, M. D., Haan, E. A., Connell, T. N., & Crotty, M. (2008). Self-esteem, self-concept, and quality of life in children with hemiplegic cerebral palsy. The Journal of Pediatrics, 153(4), 473–477. doi:0.1016/j.jpeds.2008.05.040.
Rutter, M., Graham, P., & Yule, W. (1970). A neuropsychiatric study in childhood. Clinics in developmental medicine. London: Mac Keith Press.
Schaffer, R. (1996). Social development. London: Blackwell Eds.
Shikako-Thomas, K., Llach, L., Majnemer, A., Nimigon, J., Cameron, K., & Shevell, M. (2009). Quality of life from the perspective of adolescents with cerebral palsy: “I just think I’m a normal kid, I just happen to have a disability”. Quality of Life Research, 18, 825–832. doi:10.1007/s11136-009-9501-3.
Staub, E. (1979). Positive social behavior and morality: Vol. 2. Socialization and development. New York: Academic.
The European DISABKIDS Group. (2006). The DISABKIDS questionnaires - Quality of Life questionnaires for children with chronic conditions - Handbook. Germany: Pabst science publishers.
Tseng, M. H., Chen, K. L., Shieh, J. Y., Lub, L., & Huang, C. Y. (2011). The determinants of daily function in children with cerebral palsy. Research in Developmental Disabilities, 32, 235–245. doi:10.1016/j.ridd.2010.09.024.
Varni, J. W., Burwinkle, T. M., Sherman, S. A., Hanna, K., Berrin, S. J., Malcarne, V. L., et al. (2005a). Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Developmental Medicine and Child Neurology, 47(9), 592–597. doi:10.1017/S0012162205001179.
Varni, J. W., Burwinkle, T. M., & Lane, M. M. (2005b). Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health and Quality of Life Outcomes, 3(34), 1–9. doi:10.1186/1477-7525-3-34.
Varni, J. W., Katz, E. R., Colegrove, R., & Dolgin, M. (1994). Perceived social support and adjustment of children with newly diagnosed cancer. Journal of Developmental and Behavioral Pediatrics, 15, 20–26.
Viehweger, E., Robitail, S., Rohon, M. A., Jacquemier, M., Jouve, J. L., Bollini, G., et al. (2008). Measuring quality of life in cerebral palsy children. Annales de réadaptation et de médecine physique, 51, 129–137.
Wallander, J. L., & Varni, J. W. (1989). Social support and adjustment in chronically ill and handicapped children. American Journal of Community Psychology, 2(17), 185–201.
WHO. (1993). The ICD-10 classification of mental and behavioural disorders. Diagnostic criteria for research. Geneva: WHO.
WHO. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409. doi:10.1016/0277-9536(95)00112-K.
Wiley, R., & Renk, K. (2007). Psychological correlates of quality of life in children with cerebral palsy. Journal of Developmental and Physical Disabilities, 19, 427–447. doi:10.1007/s10882-007-9041-0.
Winter, S., Autry, A., Boyle, C., & Yeargin-Allsopp, M. (2002). Trends in the prevalence of cerebral palsy in a population-based study. Pediatrics, 110, 1220–1225.
Youniss, J. (1980). Parents and peers in social development: a sullivan-piaget perspective. Chicago: University of Chicago Press.
Yude, C., Goodman, R., & McConanchie, H. (1998). Peer problems of children with hemiplegia in mainstream primary schools. Journal Child Psychiatry, 39(4), 533–541.
Zakriski, A. L., Wright, J. C., & Underwood, M. K. (2005). Gender similarities and differences in children’s social behavior: Finding personality in contextualized patterns of adaptation. Journal of Personality and Social Psychology, 88, 844–855.
Author information
Authors and Affiliations
Corresponding author
Additional information
PEst-OE/PSI/UI0192/2011 - Projecto Estratégico - Instituto de Psicologia Cognitiva, Desenvolvimento Vocacional e Social (FPCE/UC) - 2011–2012
Rights and permissions
About this article
Cite this article
Frontini, R., Crespo, C., Carona, C. et al. Health-Related Quality of Life and its Correlates in Children with Cerebral Palsy: An Exploratory Study. J Dev Phys Disabil 24, 181–196 (2012). https://doi.org/10.1007/s10882-011-9265-x
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10882-011-9265-x