Factors Affecting The Quality of Life of Children with Cerebral Palsy: A Single-Center Study

Yıl 2025, Cilt: 25 Sayı: 2, 105 - 113, 12.09.2025

Merve Nazlı Bener , Aysu Kahraman , Ayşegül Danış , Ayşe Aksoy

https://doi.org/10.26650/jchild.2025.1667830

Öz

Objective: Quality of life (QoL) encompasses an individual’s well-being across physical, psychological, and social dimensions and reflects how satisfying, healthy, and meaningful their life feels. This study aims to identify the variables that impact QoL in children with cerebral palsy (CP) and to determine which of these variables has the greatest impact.

Materials and Methods: This study included 100 children with CP, aged 3–18 years, who were regularly followed up at a pediatric neurology outpatient clinic. Data were collected on age, sex, presence of epilepsy, intellectual disability, caregiver’s perceived economic status, and caregiver’s education level. The children were assessed using the Gross Motor Function Classification System (GMFCS), the Face, Legs, Activity, Cry, Consolability (FLACC) pain scale, the Epworth Sleepiness Scale (ESS), and the Pediatric Quality of Life Inventory (PedsQL). Multiple regression analysis was performed to examine the effects of these variables on QoL.

Results: In children with CP, QoL was positively associated with increasing age and the caregiver’s per ceived economic status. Conversely, higher GMFCS levels, higher FLACC and ESS scores, and the presence of epilepsy were associated with lower QoL. Among these variables, the GMFCS had the most significant negative impact on QoL. Sex, caregiver’s education level, and intellectual disability did not have any effect on QoL.

Conclusion: In children with cerebral palsy, pain reduction, control or absence of epilepsy, decreased sleepiness, and particularly improvements in gross motor function levels and perceived economic status can significantly contribute to enhancing the quality of life.

Anahtar Kelimeler

Cerebral palsy , Gross Motor Function , Pain , Quality of Life , Sleep

Etik Beyan

Conflict of Interest statement: The authors declare no conflict of interest. Financial support: Any financial support was not received for this article Acknowledgements: We thank the many children and adolescents and their families who generously gave their time to participate in this study. This study was Dr Bener's pediatric residency research thesis. We declare that this manuscript is original, has not been published in any journals and is not currently being considered for publication else where. It was presented at the 18th Ulusal Uludağ Pediatri Kış Kongresi under the name "Serebral Palsili Çocukların Ağrı Durumları".

Teşekkür

We thank the many children and adolescents and their families who generously gave their time to participate in this study.

Kaynakça

• Badgujar S, Dixit J, Kuril BM, et al. Epidemiological predictors of quality of life and the role of early markers in children with cerebral palsy: A multi-centric cross-sectional study. Pediatr Neonatol. 2025;66(1):18-24. https://doi.org/10. 1016/j.pedneo.2024.04.003 google scholar
• Paul S, Nahar A, Bhagawati M, Kunwar AJ. A review on recent advances of cerebral palsy. Oxid Med Cell Longev. 2022;2022:2622310. https://doi.org/10.1155/ 2022/2622310 google scholar
• Maestro-Gonzalez A, Bilbao-Leon MC, Zuazua-Rico D, Fernandez-Carreira JM, Baldonedo-Cernuda RF, Mosteiro-Diaz MP. Quality of life as assessed by adults with cerebral palsy. PLoS One. 2018;13(1):e0191960. https://doi.org/10. 1371/journal.pone.0191960 google scholar
• Horwood L, Li P, Mok E, Oskoui M, Shevell M, Constantin E. Health-related quality of life in Canadian children with cerebral palsy: what role does sleep play? Sleep Med. 2019;54:213-222. https://doi.org/10.1016/j.sleep.2018.10.022 google scholar
• Vila-Nova F, Santos S, Oliveira R, Cordovil R. Parent-report health-related quality of life in school-aged children with cerebral palsy: A cross-sectional study. Front Rehabil Sci. 2022;3:1080146. https://doi.org/10.3389/fresc.2022.1080146 google scholar
• Makris T, Dorstyn D, Crettenden A. Quality of life in children and adolescents with cerebral palsy: a systematic review with meta-analysis. Disabil Rehabil. Published online 2019. https://doi.org/10.1080/09638288.2019.1623852 google scholar
• Ostojic K, Karem I, Paget SP, et al. Social determinants of health for children with cerebral palsy and their families. Dev Med Child Neurol. 2024;66(1):32-40. https://doi.org/10.1111/dmcn.15640 google scholar
• Chung CY, Chen CL, Wong AM. Pharmacotherapy of spasticity in children with cerebral palsy. J Formos Med Assoc. 2011;110(4):215-222. https://doi.org/10.1016/ s0929-6646(11)60033-8 google scholar
• Sharawat IK, Panda PK. Quality of life and its association with level of functioning in young children with cerebral palsy. Neuropediatrics. 2022;53(4):227-234. https://doi.org/10.1055/s-0042-1743432 google scholar
• Boldyreva U, Streiner DL, Rosenbaum PL, Ronen GM. Quality of life in adolescents with epilepsy, cerebral palsy, and population norms. Dev Med Child Neurol. 2020;62(5):609-614. https://doi.org/10.1111/dmcn.14450 google scholar
• Findlay B, Switzer L, Narayanan U, Chen S, Fehlings D. Investigating the impact of pain, age, Gross Motor Function Classification System, and sex on health-related quality of life in children with cerebral palsy. Dev Med Child Neurol. 2016;58(3):292-297. https://doi.org/10.1111/dmcn.12936 google scholar
• Mensch SM, Echteld MA, Lemmens R, Oppewal A, Evenhuis HM, Rameckers EAA. The relationship between motor abilities and quality of life in children with severe multiple disabilities. J Intellect Disabil Res. 2019;63(2):100-112. https:// doi.org/10.1111/jir.12546 google scholar
• Newman CJ, O'Regan M, Hensey O. Sleep disorders in children with cerebral palsy. Dev Med Child Neurol. 2006;48(7):564-568. https://doi.org/10.1017/s 0012162206001198 google scholar
• Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126-139. https://doi.org/10.1097/ 00005650-199902000-00003 google scholar
• Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;39(8):800-812. https://doi.org/10.1097/00005650-200108000-00006 google scholar
• Uneri OS, Agaoglu B, Coskun A, Memik NC. Validity and reliability of Pediatric Quality of Life Inventory for 2- to 4-year-old and 5- to 7-year-old Turkish children. Qual Life Res. 2008;17(2):307-315. https://doi.org/10.1007/s11136-007-9303-4 google scholar
• Memik NÇ, Ağaoğlu B, Coşkun A, Üneri ÖŞ, Karakaya I. Çocuklar için yaşam kalitesi ölçeğinin 13-18 yaş ergen formunun geçerlik ve güvenilirliği. Turk Psikiyatri Derg. 2007;18(4):353-363 google scholar
• Memik NC, Ağaoğlu B, Coşkun A, Karakaya I. Çocuklar için yaşam kalitesi ölçeğinin 8–12 yaş çocuk formunun geçerlik ve güvenirliği. Cocuk Ergen Ruh Sagligi Derg. 2008;15(2):87-98. google scholar
• Merkel SI, Voepel-Lewis T, Shayevitz JR, Malviya S. The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatr Nurs. 1997;23(3):293-297. google scholar
• Peng T, Qu S, Du Z, Chen Z, Xiao T, Chen R. A systematic review of the measurement properties of Face, Legs, Activity, Cry and Consolability scale for pediatric pain assessment. J Pain Res. 2023;16:1185-1196. https://doi.org/10.2147/ jpr.s397064 google scholar
• Shabana T, Ibrahim AN. The revised-Face, Legs, Activity, Cry, and Consolability scale: an Egyptian version. Res Opin Anesth Intensive Care. 2018;5(1):67. google scholar
• Fox MA, Ayyangar R, Parten R, Haapala HJ, Schilling SG, Kalpakjian CZ. Selfreport of pain in young people and adults with spastic cerebral palsy: interrater reliability of the revised Face, Legs, Activity, Cry, and Consolability (r-FLACC) scale ratings. Dev Med Child Neurol. 2019;61(1):69-74. https://doi.org/10.1111/ dmcn.13980 google scholar
• Voepel-Lewis T, Malviya S, Tait AR, et al. A comparison of the clinical utility of pain assessment tools for children with cognitive impairment. Anesth Analg. 2008;106(1):72-78. https://doi.org/10.1213/01.ane.0000287680.21212.d0 google scholar
• Voepel-Lewis T, Zanotti J, Dammeyer JA, Merkel S. Reliability and validity of the Face, Legs, Activity, Cry, Consolability behavioral tool in assessing acute pain in critically ill patients. Am J Crit Care. 2010;19(1):55-62. https://doi.org/10.4037/ ajcc2010624 google scholar
• Izci B, Ardic S, Firat H, Sahin A, Altinors M, Karacan I. Reliability and validity studies of the Turkish version of the Epworth Sleepiness Scale. Sleep Breath. 2008;12(2):161-168. https://doi.org/10.1007/s11325-007-0145-7 google scholar
• Johns MW. Sensitivity and specificity of the multiple sleep latency test (MSLT), the maintenance of wakefulness test and the Epworth Sleepiness Scale: failure of the MSLT as a gold standard. J Sleep Res. 2000;9(1):5-11. https://doi.org/10. 1046/j.1365-2869.2000.00177.x google scholar
• Johns MW. A new method for measuring daytime sleepiness: the Epworth Sleepiness Scale. Sleep. 1991;14(6):540-545. https://doi.org/10.1093/sleep/14.6. 540 google scholar
• Ağargün MY, Çilli AS, Kara H, et al. Epworth Uykululuk Ölçeği'nin geçerliği ve güvenirliği. Turk Psikiyatri Derg. 1999;10(4):261-267. google scholar
• Palisano R, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39(4):214-223. https://doi.org/10.1111/ j.1469-8749.1997.tb07414.x google scholar
• Palisano RJ, Rosenbaum P, Bartlett D, Livingston MH. Content validity of the expanded and revised Gross Motor Function Classification System. Dev Med Child Neurol. 2008;50(10):744-750. https://doi.org/10.1111/j.1469-8749.2008. 03089.x google scholar
• Uneri OS, Karadavut KI. Parent-reported quality of life of children with cerebral palsy: a preliminary study/Ebeveynstudy / Ebeveyn değerlendirmesine dayalı, serebral palsili çocuklarda yaşam kalitesi: bir ön çalışma. Arch Neuropsychiatry. 2010;47(3):127-133. google scholar
• Riquelme I, Cifre I, Montoya P. Age-related changes of pain experience in cerebral palsy and healthy individuals. Pain Med. 2011;12(4):535-545. https://doi. org/10.1111/j.1526-4637.2011.01094.x google scholar
• Majnemer A, Shevell M, Rosenbaum P, Law M, Poulin C. Determinants of life quality in school-age children with cerebral palsy. J Pediatr. 2007;151(5):470-475.e4753. https://doi.org/10.1016/j.jpeds.2007.04.014 google scholar
• Berkman JM. Sleep in children with developmental disabilities. Med Health R I. 2006;89(4):94-96. google scholar
• Ostendorf AP, Axeen ET, Eschbach K, et al. Epilepsy and proxy-reported health-related quality of life in children and young people with non-ambulatory cerebral palsy. Dev Med Child Neurol. 2023;65(2):200-206. https://doi.org/10. 1111/dmcn.15336 google scholar
• Malviya S, Voepel-Lewis T, Burke C, Merkel S, Tait AR. The revised FLACC observational pain tool: improved reliability and validity for pain assessment in children with cognitive impairment. Paediatr Anaesth. 2006;16(3):258-265. https://doi.org/10.1111/j.1460-9592.2005.01773.x google scholar
• Voepel-Lewis T, Merkel S, Tait AR, Trzcinka A, Malviya S. The reliability and validity of the Face, Legs, Activity, Cry, Consolability observational tool as a measure of pain in children with cognitive impairment. Anesth Analg. 2002;95(5):1224-1229. https://doi.org/10.1097/00000539-200211000-00020 google scholar
• Arnaud C, White-Koning M, Michelsen SI, et al. Parent-reported quality of life of children with cerebral palsy in Europe. Pediatrics. 2008;121(1):54-64. https:// doi.org/10.1542/peds.2007-0854 google scholar
• Davis E, Reddihough D, Murphy N, et al. Exploring quality of life of children with cerebral palsy and intellectual disability: What are the important domains of life? Child Care Health Dev. 2017;43(6):854-860. https://doi.org/10.1111/cch.12501 google scholar
• Singer GH, Irvin LK, Hawkins N. Stress management training for parents of children with severe handicaps. Ment Retard. 1988;26(5):269-277. google scholar