Turkiye Klinikleri Journal of Pediatrics

.: ORIGINAL RESEARCH
Serebral Palsi Hastalarında Yaşam Kalitesinin Değerlendirilmesi: Tanımlayıcı Araştırma
Evaluation of Quality of Life in Cerebral Palsy Patients: Descriptive Research
Özlem UĞUR AYDINa , Arife Derda YÜCEL ŞENa , Bilge AKMAN KAHRAMANa , Meltem DİNLEYİCİb , Coşkun YARARa , Kürşat Bora ÇARMANa
aEskişehir Osmangazi Üniversitesi Tıp Fakültesi, Çocuk Nöroloji BD, Eskişehir, Türkiye
bEskişehir Osmangazi Üniversitesi Tıp Fakültesi, Sosyal Pediatri BD, Eskişehir, Türkiye
Turkiye Klinikleri J Pediatr. 2025;34(1):19-26
doi: 10.5336/pediatr.2024-107044
Article Language: TR
Full Text
ÖZET
 Amaç: Serebral palsi (SP) hastaların birinci derecede bakım veren ebeveynlerinin gözünden yaşam kalitesinin değerlendirilmesi planlandı. Gereç ve Yöntemler: Bu çalışmada SP tanısıyla takip edilmekte olan 4-12 yaş arası hastaların Kaba Motor Fonksiyon Sınıflama Sistemi ile fonksiyonel düzeyi belirlenerek birinci derecede bakım veren ebeveynlerine SP'de Yaşam Kalitesi Anketi uygulandı. Anket sonuçlarına göre aile ve arkadaşlar, hayata katılım, konuşma ve iletişim, sağlık, özel ekipmanlar, ağrı ve rahatsızlık, hizmet alabilme, ebeveyn sağlığı değerlendirme puanları yapılarak, yaşam kalitesi yüzde olarak hesaplandı. Bulgular: Çalışma toplam 100 katılımcıyla gerçekleştirildi. Çalışmaya katılanların 47'si kız (%47), 53'ü erkekti (%53). SP'li 7 hasta (%7) spastik kuadripleji, 60 hasta (%60) spastik dipleji, 33 hasta (%33) spastik hemiplejikti. Yaşam kalitesi skoru değerlendirmesinde, arkadaşlar ve aile arasında hisler 65,4±15,1, hayata katılım 56,4±21,2, konuşma ve iletişim 70,1±18,9, sağlık 59,4±16,3, özel ekipmanlar 50,1±31,4, ağrı ve rahatsızlık 57,3±14,4, hizmet alabilme 55,5±15,6, ebeveyn sağlığı 59,7±14,9 olarak saptandı. Sonuç: SP'li bireylerin yaşam kalitesini artırmak, multidisipliner bir yaklaşım gerektirir ve bu süreçte bireylerin, ailelerin ve toplumun bir bütün olarak ele alınması gerekir. Kişiye özel sağlık problemleri ve risk faktörlerinin belirlenerek tedavi planlaması yapılması önemlidir. Bu kapsamlı ve entegre yaklaşım, SP'li bireylerin ve ailelerinin yaşam kalitesini iyileştirebilir ve daha umutlu, tatmin edici bir yaşam sürmelerine yardımcı olabilir.

Anahtar Kelimeler: Serebral palsi; çocuk; ölçekler ve anketler
ABSTRACT
 Objective: It was planned to evaluate the quality of life of cerebral palsy (CP) patients through the eyes of their primary caregivers. Material and Methods: In this study, the functional level of patients between the ages of 4-12 who were being followed with the diagnosis of CP was determined with the Gross Motor Function Classification System and the The CP Quality of Life for Children was applied to their primary caregivers. According to the survey results, family and friends, participation in life, speech and communication, health, special equipment, pain and discomfort, access to services, and parental health assessment scores were made and the quality of life was calculated as a percentage. Result: The study was conducted with a total of 100 participants. 47 of the participants were girls (47%) and 53 were boys (53%). 7 patients with CP (7%) had spastic quadriplegia, 60 patients (60%) had spastic diplegia, and 33 patients (33%) had spastic hemiplegia. In the quality of life score assessment, feelings among friends and family were 65.4±15.1, participation in life 56.4±21.2, speech and communication 70.1±18.9, health 59.4±16.3, special equipment 50.1±31.4, pain and discomfort 57.3±14.4, access to services 55.5±15.6, and parental health 59.7±14.9. Conclusion: Improving the quality of life of individuals with CP requires a multidisciplinary approach, and individuals, families, and society should be considered as a whole in this process. It is important to determine individual health problems and risk factors and make treatment plans. This comprehensive and integrated approach can improve the quality of life of individuals with CP and their families and help them live a more hopeful, satisfying life.

Keywords: Cerebral palsy; child; surveys and questionnaires
REFERENCES:
  1. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M, Damiano D, et al. A report: the definition and classification of cerebral palsy April 2006. Dev Med Child Neurol Suppl. 2007;109:8-14. Erratum in: Dev Med Child Neurol. 2007;49(6):480. [PubMed] 
  2. Serdaroğlu A, Cansu A, Ozkan S, Tezcan S. Prevalence of cerebral palsy in Turkish children between the ages of 2 and 16 years. Dev Med Child Neurol. 2006;48(6):413-6. [Crossref]  [PubMed] 
  3. Yakut A. Serebral palsi etiolojisi ve risk faktörleri. İçağasıoğlu DF, Sönmez FM, editörler. Serebral Palsi. 1. Baskı. Ankara: Türkiye Klinikleri; 2021. p.1-3.
  4. Dursun N. Serebral Palsi. Oğuz H, Dursun E, Dursun, editörler. Tıbbi Rehabilitasyon. 1. Baskı. İstanbul: Nobel Tıp Kitapevleri; 2004. p.957-74.
  5. Fuhrer MJ. Subjective well-being: implications for medical rehabilitation outcomes and models of disablement. Am J Phys Med Rehabil. 1994;73(5):358-64. [Crossref]  [PubMed] 
  6. de Leeuw MJ, Schasfoort FC, Spek B, van der Ham I, Verschure S, Westendorp T, et al. Factors for changes in self-care and mobility capabilities in young children with cerebral palsy involved in regular outpatient rehabilitation care. Heliyon. 2021;7(12):e08537. [Crossref]  [PubMed]  [PMC] 
  7. Palisano RJ, Chiarello LA, King GA, Novak I, Stoner T, Fiss A. Participation-based therapy for children with physical disabilities. Disabil Rehabil. 2012;34(12):1041-52. [Crossref]  [PubMed] 
  8. Sentenac M, Rapp M, Ehlinger V, Colver A, Thyen U, Arnaud C. Disparity of child/parent-reported quality of life in cerebral palsy persists into adolescence. Dev Med Child Neurol. 2021;63(1):68-74. [Crossref]  [PubMed] 
  9. El O, Baydar M, Berk H, Peker O, Koşay C, Demiral Y. Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system. Disabil Rehabil. 2012;34(12):1030-3. [Crossref]  [PubMed] 
  10. Waters E, Davis E, Mackinnon A, Boyd R, Graham HK, Kai Lo S, et al. Psychometric properties of the quality of life questionnaire for children with CP. Dev Med Child Neurol. 2007;49(1):49-55. [Crossref]  [PubMed] 
  11. Atasavun Uysal S, Düger T, Elbasan B, Karabulut E, Toylan İ. Reliability and validity of The Cerebral Palsy Quality of Life Questionnaire in the Turkish population. Percept Mot Skills. 2016;122(1):150-64. [Crossref]  [PubMed] 
  12. Krigger KW. Cerebral palsy: an overview. Am Fam Physician. 2006;73(1):91-100. [PubMed] 
  13. Vitale MG, Roye EA, Choe JC, Hyman JE, Lee FY, Roye DP Jr. Assessment of health status in patients with cerebral palsy: what is the role of quality-of-life measures? J Pediatr Orthop. 2005;25(6):792-7. [Crossref]  [PubMed] 
  14. Matthews DJ, Wilson P. Cerebral Palsy. In: Molnar GE, Alexander MA, editors. Pediatric Rehabilitation. 3rd ed. Philadelphia: Hanley and Belfus Inc; 1999. p.193- 219.
  15. Schneider JW, Gurucharri LM, Gutierrez AL, Gaebler-Spira DJ. Health-related quality of life and functional outcome measures for children with cerebral palsy. Dev Med Child Neurol. 2001;43(9):601-8. [Crossref]  [PubMed] 
  16. Bartlett DJ, Palisano RJ. Physical therapists' perceptions of factors influencing the acquisition of motor abilities of children with cerebral palsy: implications for clinical reasoning. Phys Ther. 2002;82(3):237-48. [Crossref]  [PubMed] 
  17. Carlon S, Shields N, Yong K, Gilmore R, Sakzewski L, Boyd R. A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy. BMC Pediatr. 2010;10:81. [Crossref]  [PubMed]  [PMC] 
  18. Michalska A, Markowska M, Śliwiński Z, Pogorzelska JA. Quality of life in children and young people with tetraplegic cerebral palsy. Medical Studies. 2018;34(2):112-9. [Crossref] 
  19. Berrin SJ, Malcarne VL, Varni JW, Burwinkle TM, Sherman SA, Artavia K, et al. Pain, fatigue, and school functioning in children with cerebral palsy: a path-analytic model. J Pediatr Psychol. 2007;32(3):330-7. [Crossref]  [PubMed] 
  20. Kennes J, Rosenbaum P, Hanna SE, Walter S, Russell D, Raina P, et al. Health status of school-aged children with cerebral palsy: information from a population-based sample. Dev Med Child Neurol. 2002;44(4):240-7. [Crossref]  [PubMed] 
  21. Tüzün EH, Eker L, Daşkapan A. An assessment of the impact of cerebral palsy on children's quality of life. Turk J Physiother Rehabil. 2004;15(1):3-8.
  22. Erdoğanoğlu Y. Serebral paralizili çocuklar ve ailelerinde sağlıkla ilgili yaşam kalitesinin değerlendirilmesi [Yüksek lisans tezi]. Ankara: Hacettepe Üniversitesi; 2006. [Link] 
  23. Özel S. Serebral palsi. Beyazova M, Gökçe Kutsal Y, editörler. Fiziksel Tıp ve Rehabilitasyon. Ankara: Güneş Tıp Kitabevleri; 2011. p. 2681- 724.
  24. Vargus-Adams J. Health-related quality of life in childhood cerebral palsy. Arch Phys Med Rehabil. 2005;86(5):940-5. [Crossref]  [PubMed] 
  25. Varni JW, Burwinkle TM, Berrin SJ, Sherman SA, Artavia K, Malcarne VL, et al. The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Dev Med Child Neurol. 2006;48(6):442-9. [Crossref]  [PubMed] 
  26. Ozkan Y. Child's quality of life and mother's burden in spastic cerebral palsy: a topographical classification perspective. J Int Med Res. 2018;46(8):3131-7. [Crossref]  [PubMed]  [PMC] 
  27. Marrón EM, Redolar-Ripol D, Boixadós M, Nieto R, Guillamón N, Hernández E, et al. Burden on caregivers of children with cerebral palsy: predictors and related factors. Universitas Psychologica. 2013;12:767-77. [Crossref] 
  28. Boztepe H, Çınar S, Ay A, Kerimoğlu Yıldız G, Kılıç C. Predictors of caregiver burden in mothers of children with leukemia and cerebral palsy. J Psychosoc Oncol. 2019;37(1):69-78. [Crossref]  [PubMed] 
  29. Özdemir FK, Şahin ZA, Küçük D. Kanserli çocuğu olan annelerin bakım verme yüklerinin belirlenmesi. Yeni Tıp Dergisi. 2009;26:153-8. [Link] 

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