Adölesan Serebral Palsi’li Bireylerde Fonksiyonel Etkilenimin Sağlıkla İlişkili Yaşam Kalitesi Parametreleri Üzerine Etkilerinin İncelenmesi: Kesitsel Çalışma

Yıl 2022, Cilt: 7 Sayı: 13, 9 - 28, 30.12.2022

Hasan Bingöl Mintaze Kerem Günel

Öz

Bu çalışmanın amacı adölesan Serebral Palsi (SP)’li bireylerde fonksiyonel motor ve iletişim performansı etkileniminin Sağlıkla İlişkili Yaşam Kalitesi (SİYK) sonuçlarına etkisini araştırmaktır.Çalışmaya yaş aralığı 13-18 (ortalama [O] 16,45 ve standart sapma [SS]: 1,8; 24 erkek ve 27 kız) arasında değişen ve büyük çoğunluğu spastik SP olmak üzere (%68,6), SP’nin diğer alt türleri (diskinetik: %23,5; ataksik: %7,8) ile tanılı adölesan SP’li bireyler dahil edildi. Bireylerin fonksiyonel etkilenim şiddeti El Becerileri Sınıflandırma Sistemi (EBSS), Kaba Motor Fonksiyon Sınıflandırma Sistemi (KMFSS) ve İletişim Becerileri Sınıflandırma Sistemi (İBSS) kullanılarak belirlendi. SİYK sonuçları ise Adölesanlar için Serebral Palsi Yasam Kalite Anketi (CP QOL-Ergen) sürümü kullanılarak tanımlandı. Yüksek ve düşük fonksiyonel seviyelerdeki bireylerin SİYK sonuçları arasındaki olası istatistiksel farklar Mann Whitney-U testi kullanılarak araştırıldı. Kaba ve ince motor becerilerindeki etkilenim şiddetinin SİYK’in tüm alt parametrelerine anlamlı etkisi bulundu (P<0,05). Benzer şekilde, CP QOL- ‘Okul Durumu’ ve ‘İşlevsellik Hakkındaki Düşünceler’ alt testleri (P>0,05) dışındaki diğer tüm SİYK alt testlerinde iletişim becerilerindeki etkilenim şiddeti bakımından gruplar arasında istatistiksel olarak anlamlı farklılıklar saptandı (P<0,05).Adölesan SP’li bireylerde daha iyi SİYK sonuçları daha iyi bir fonksiyonel motor ve iletişim performansı seviyesine bağlıdır. Bundan ötürü, SP’li ergenlerin hem fonksiyonel hem de iletişim becerilerini artıracak en uygun tedavi yaklaşımları ile desteklenmeleri daha iyi SİYK sonuçlarına sahip olmaları açısından çok önemlidir.

Anahtar Kelimeler

serebral palsi, adölesan, SİYK, yaşam kalitesi, fonksiyon

Kaynakça

• Abu Dahab, S. M., Alheresh, R. A., Malkawi, S. H., Saleh, M., Wong, J. (2021). Participation patterns and determinants of participation of young children with cerebral palsy. Australian occupational therapy journal, 68(3), 195-204. Akpinar, P., Tezel, C. G., Eliasson, A.-C., Icagasioglu, A. (2010). Reliability and cross-cultural validation of the Turkish version of Manual Ability Classification System (MACS) for children with cerebral palsy. Disability and rehabilitation, 32(23), 1910-1916. Balandin, S., Morgan, J. (1997). Adults with cerebral palsy: what’s happening? Journal of Intellectual and Developmental Disability, 22(2), 109-124. Beckung, E., Hagberg, G. (2000). Correlation between ICIDH handicap code and Gross Motor Function Classification System in children with cerebral palsy. Dev Med Child Neurol, 42(10), 669-673. Beckung, E., Hagberg, G. (2002). Neuroimpairments, activity limitations, and participation restrictions in children with cerebral palsy. Dev Med Child Neurol, 44(5), 309-316. Bingol, H., Gunel, M. K. (2021). The effects of hand deformity on upper-limb function and health-related quality of life in children with spastic hemiplegic cerebral palsy. Hand Surgery and Rehabilitation, 40(6), 722-728. Bingol, H., Kerem Gunel, M., Alkan, H. (2021). The Efficacy of Two Models of Intensive Upper Limb Training on Health-Related Quality of Life in Children with Hemiplegic Cerebral Palsy Mainstreamed in Regular Schools: A Double-Blinded, Randomized Controlled Trial. Physiotherapy Theory and Practice, 1-16. CanChild. Retrieved from https://canchild.ca/system/tenon/assets/attachments/000/000/083/original/GMFCS-ER_Translation-Turksih.pdfChen, K.-L., Tseng, M.-H., Shieh, J.-Y., Lu, L., Huang, C.-Y. (2014). Determinants of quality of life in children with cerebral palsy: A comprehensive biopsychosocial approach. Research in developmental disabilities, 35(2), 520-528. Chiarello, L. A., Bartlett, D. J., Palisano, R. J., McCoy, S. W., Fiss, A. L., Jeffries, L., Wilk, P. (2016). Determinants of participation in family and recreational activities of young children with cerebral palsy. Disability and rehabilitation, 38(25), 2455-2468. Chien, C. W., Brown, T., McDonald, R. (2009). A framework of children’s hand skills for assessment and intervention. Child: care, health and development, 35(6), 873-884. Chien, C. W., Rodger, S., Copley, J., McLaren, C. (2014). Measures of participation outcomes related to hand use for 2 to 12 year old children with disabilities: a systematic review. Child: care, health and development, 40(4), 458-471. Çelik, S., Durmaz, B. Investigation of the validity and reliability of the Turkish version of the CP QOL-Teen Questionnaire in adolescents with cerebral palsy. (Doctoral). Retrieved from https://toad.halileksi.net/sites/default/files/pdf/cp-qol-teen-olcegi-toad.pdfDavis, E., Davern, M., Waters, E., Boyd, R., Reddihough, D., Mackinnon, A., Graham, H. K. (2013). Cerebral palsy quality of life questionnaire for adolescents (CP QOL-teen) manual. Melbourne: University of Melbourne. Davis, E., Mackinnon, A., Davern, M., Boyd, R., Waters, E., Graham, H. K., . . . Reddihough, D. (2013). Description and psychometric properties of the CP QOL-Teen: a quality of life questionnaire for adolescents with cerebral palsy. Research in developmental disabilities, 34(1), 344-352. El, Ö., Baydar, M., Berk, H., Peker, Ö., Koşay, C., Demiral, Y. (2012). Interobserver reliability of the Turkish version of the expanded and revised gross motor function classification system. Disability and rehabilitation, 34(12), 1030-1033. Eliasson, A.-C., Krumlinde-Sundholm, L., Rösblad, B., Beckung, E., Arner, M., Öhrvall, A.-M., Rosenbaum, P. (2006). The Manual Ability Classification System (MACS) for children with cerebral Adölesan Serebral Palsi’li Bireylerde Fonksiyonel Etkilenimin Sağlıkla İlişkili Yaşam Kalitesi Parametreleri Üzerine Etkilerinin İncelenmesi: Kesitsel Çalışma27Çocuk ve Medeniyet 2022palsy: scale development and evidence of validity and reliability. Dev Med Child Neurol, 48(7), 549-554. Ferreira, M. C., Garcia, N. R., Prudente, C. O. M., Ribeiro, M. F. M. (2020). Quality of life of adolescents with cerebral palsy: agreement between self-report and caregiver’s report. Revista Latino-Americana de Enfermagem, 28. Gladstone, M. (2010). A review of the incidence and prevalence, types and aetiology of childhood cerebral palsy in resource-poor settings. Annals of tropical paediatrics, 30(3), 181-196. Group, T. W. (1998). The World Health Organization quality of life assessment (WHOQOL): development and general psychometric properties. Social science medicine, 46(12), 1569-1585. Gunel, M. K., Mutlu, A., Tarsuslu, T., Livanelioglu, A. (2009). Relationship among the Manual Ability Classification System (MACS), the Gross Motor Function Classification System (GMFCS), and the functional status (WeeFIM) in children with spastic cerebral palsy. European journal of pediatrics, 168(4), 477-485. Hallum, A. (1995). Disability and the transition to adulthood: issues for the disabled child, the family, and the pediatrician. Current Problems in Pediatrics, 25(1), 12-50. Hidecker, M. J. C., Paneth, N., Rosenbaum, P. L., Kent, R. D., Lillie, J., Eulenberg, J. B., . . . Evatt, M. (2011). Developing and validating the Communication Function Classification System for individuals with cerebral palsy. Developmental Medicine Child Neurology, 53(8), 704-710. Kerr, C., McDowell, B., McDonough, S. (2007). The relationship between gross motor function and participation restriction in children with cerebral palsy: an exploratory analysis. Child: care, health and development, 33(1), 22-27. Lim, Y., Seer, M., Wong, C. P. (2009). Impact of cerebral palsy on the quality of life in patients and their families. Neurology Asia, 14(1). Liu, W.-Y., Hou, Y.-J., Wong, A. M., Lin, P.-S., Lin, Y.-H., Chen, C.-L. (2009). Relationships between gross motor functions and health-related quality of life of Taiwanese children with cerebral palsy. American journal of physical medicine, rehabilitation, 88(6), 473-483. 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(3), 225-231. Palisano, R. J., Rosenbaum, P., Bartlett, D., Livingston, M. H. (2008). Content validity of the expanded and revised Gross Motor Function Classification System. Developmental Medicine, Child Neurology, 50(10), 744-750. Park, E.-Y. (2018). Path analysis of strength, spasticity, gross motor function, and health-related quality of life in children with spastic cerebral palsy. Health and quality of life outcomes, 16(1), 1-7. Rosenbaum, P., Gorter, J. W., Palisano, R., Morris, C. (2010). ‘The relationship of cerebral palsy subtype and functional motor impairment: a population-based study’. Dev Med Child Neurol, 52(7), 682-683; author reply 683-684. doi:10.1111/j.1469-8749.2010.03652.xRosenbaum, P. L., Livingston, M. H., Palisano, R. J., Galuppi, B. E., Russell, D. J. (2007). Quality of life and health related quality of life of adolescents with cerebral palsy. Developmental Medicine, Child Neurology, 49(7), 516-521. Russo, R. N., Goodwin, E. J., Miller, M. D., Haan, E. A., Connell, T. M., 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. e472. Shepherd, J., Brollier, C. B., Dandrow, R. L. (1994). Play skills of preschool children with speech and language delays. Physical, Occupational Therapy in Pediatrics, 14(2), 1-20. Tarsuslu, T., Livanelioglu, A. (2010). Relationship between quality of life and functional status of young adults and adults with cerebral palsy. Disability and rehabilitation, 32(20), 1658-1665. Hasan Bingöl, Mintaze Kerem Günel28Çocuk ve Medeniyet 2022Thomas Stonell, N., Washington, K., Oddson, B., Robertson, B., Rosenbaum, P. (2013). Measuring communicative participation using the FOCUS©: F ocus on the O utcomes of C ommunication U nder S ix. Child: care, health and development, 39(4), 474-480. Tonmukayakul, U., Imms, C., Mihalopoulos, C., Reddihough, D., Carter, R., Mulhern, B., Chen, G. (2020). Health-related quality of life and upper-limb impairment in children with cerebral palsy: developing a mapping algorithm. Developmental Medicine, Child Neurology, 62(7), 854-860. Turkish Communication Function Classification System. (2011). Retrieved from http://cfcs.us/wp-content/uploads/2014/02/Turkish_CFCS_2012_06_26.pdfVan der Slot, W., Nieuwenhuijsen, C., Van den Berg-Emons, R., Wensink-Boonstra, A. E., Stam, H. J., Roebroeck, M. E., Netherlands, T. R. G. S. W. (2010). Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med, 42(6), 528-535. van der Slot, W. M., Nieuwenhuijsen, C., van den Berg-Emons, R. J., Wensink-Boonstra, A. E., Stam, H. J., Roebroeck, M. E. (2010). Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med, 42(6), 528-535. doi:10.2340/16501977-0555Varni, J. W., Burwinkle, T. M., Sherman, S. A., Hanna, K., Berrin, S. J., Malcarne, V. L., 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), 592-597. Wensink-Boonstra, A. E., Marij, E. (2010). Participation and health-related quality of life in adults with spastic bilateral cerebral palsy and the role of self-efficacy. J Rehabil Med, 42, 528-535.