Relationship between caregiver related factors and their proxy report of quality of life of children with cerebral palsy in Kano City, Nigeria
Abstract
Background: Caregivers have intimate knowledge of their children and can provide reliable information on their quality of life (QoL).
Objective: This study assessed the factors that could influence caregiver report of QoL of children with Cerebral Palsy.
Methods: The cross-sectional survey recruited 30 caregivers and children diagnosed with CP using purposive sampling technique. QoL was assessed with CP-QoL questionnaire, depression with Patient Health Questionnaire (PHQ-9) and functional level with Gross Motor Function Classification System (GMFCS). Socio-demographic data and perceived stress were assessed with a pro-forma. The data were summarised with descriptive statistics and analysed with Spearman Rank Order correlation at alpha level of 0.05.
Results: The mean age of caregivers and that of children with CP were 34.40 ± 7.02 years and 7.23 ± 2.08 years respectively. The mean QoL score was 60.06±4.27. The ‘social well-being and acceptance’ (75.07 ± 9.52) and ‘Access to services’ (66.65±7.87) domains have the highest mean scores. Marital status has significant relationship with proxy report of children’s overall QoL (Rho=0.40; P<0.05) and caregiver depression (Rho=-0.414; P<0.05).
Conclusion: Children with CP in Kano City have moderate QoL. Proxy report of overall QoL was significantly related to marital status with married caregivers’ more likely to report better QoL. Child’s functional status, caregivers’ age and their level of income have also influenced the proxy report of some QoL domains. Researchers should always endeavor to compare parents’ and children’s reports in order to obtain a more accurate measure of children’s QoL.
References
Arnaud C, White-Koning M, Michelsen SI, Parkes J, Parkinson K, Thyen U, Beckung E, Dickinson Ho, Fauconnier J, Marcelli M, Mcmanus V, Colver, A. (2008) Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe. Paediatrics. 121(1): 54-64 doi: 10.1542/peds.2007-0854
Badaru UM, OGwumike OO, Adeniyi AF, Kaka B. (2013) Psychosocial adversities and depression in mothers of children with cerebral palsy in Nigeria. J. Pediatric Neurol. 11: 1–7 DOI 10.3233/JPN-120593 IOS Press
Bian C, Li C, Duan Q, Wu H. (2011)Reliability and validity of patient health questionnaire: Depressive syndrome module for outpatients. Sci Res Essays 6(2):278-82.
Chulliyil SC, Diwan SJ, Sheth MS, Vyas NJ. (2014) Correlation of functional independence and quality of life in school aged children with cerebral palsy. International Journal of Contemporary Pediatrics 1(1):32-36. http://www.ijpediatrics.com.
Cremeens J, Eiser C, Blades M. (2006) Factors influencing agreement between child self-report and caregiver proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes. 4:58
Davis E, Davies B, Wolfe R, Raadsveld R, Heine B , Thomason P, Dobson F, Graham H.K. ( 2009b) A randomized controlled trial of the impact of therapeutic horse riding on the quality of life, health, and function of children with cerebral palsy. Dev Med Child Neurol 51: 111–119
Davis, E., Shelly, A., Waters, E., Davern, M. (2009a) Measuring the quality of life of children with cerebral palsy: comparing the conceptual differences and psychometric properties of three instruments. Dev Med Child Neurol 52(2):174-80.
Erhart M, Ellert U, Kurth B, Ravens-Sieberer U. (2009) Measuring adolescents' HRQoL via self-reports and parent proxy reports: an evaluation of the psychometric properties of both /versions of the KINDL-R instrument. Health and Quality of Life Outcomes 7:77 http://www.hqlo.com/content/7/1/77
Feeny D, Furlong W, Boyle M, Torrance GW. (1995) Multi-attribute health status classification systems: Health Utilities Index. Pharmacoeconomics 7:490–502
Goodwin DA, Boggs SR, Graham-Pole J.(1994) Development and validation of the Pediatric Oncology Quality of Life Scale. Psychol Assess 6:321–328
Naing, L. Winn, T. Rusli B.N. (2006) Practical Issues in Calculating the Sample Size for Prevalence Studies. Archives of Orofacial Sciences; 1: 9-14
Oskoui M1, Coutinho F, Dykeman J, Jetté N, Pringsheim T. (2013) An update on the prevalence of cerebral palsy: a systematic review and meta-analysis. Dev Med Child Neurol. 55(6):509-19. doi: 10.1111/dmcn.12080.
Palisano RJ, Almarsi N, Chiarello LA, Orlin, M N, Bagley A, Maggs J.( 2009) Family needs of parents of children and youth with cerebral palsy. Child care, health dev. 36, 1, 85–92 doi:10.1111/j.13652214.2009.01030.x
Panepinto JA Hoffmann RG And Pajewski NM.(2013)The Effect of Parental Mental Health on Proxy reports of Health related Quality of Life in Children with Sickle Cell Disease. Pediatr Blood Cancer. PMC 2013
Shevell MI, Bodensteiner JB. (2004)Cerebral palsy: defining the problem. Semin Pediatr. Neurol. 11(1):2-4.
Shikako-Thomas K, Bogossian A, Lach LM, Shevell M, Majnemer A. (2013) Parents’perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope. Disabil. Rehabil 35(25): 2113-2122
Varni JW, Burwinkle TM, Sherman SA, Hanna K, Berrin SJ, Malcarne VL, Chambers H.G. (2005) Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children. Dev Med Child Neurol 47(9):592-7.
Varni JW, Limbers CA, Burwinkle TM. (2007) Parent proxy-report of their children's health- related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales. Health and Qual of Life Outcomes. 5:2
Waters E, Davis E, Boyd R, Reddihough D, Mackinnon A, Graham Hk, Lo Sk, Wolfe R, Stevenson R, Bjornson K, Blair E, Ravens-Sieberer U. (2013) Cerebral Palsy Quality of Life Questionnaire for Children Manual.; Melbourne: University of Melbourne
White-Koning M, Grandjean H, Colver A, Arnaud C. (2008) parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Dev Med Child Neurol. 50: 618–624.
