Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study
Yıl: 2022 Cilt: 37 Sayı: 1 Sayfa Aralığı: 105 - 112 Metin Dili: İngilizce DOI: 10.4274/MMJ.galenos.2022.54920 İndeks Tarihi: 23-06-2022
Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study
Öz: Objective: This study aimed to investigate the current status and changes
in motor and functional status, participation, and quality of life of
individuals with cerebral palsy (CP) during the 13-year follow-up.
Methods: Data from the database were retrospectively analyzed, including
comorbidities, mobility status, orthotic usage, and information about the
rehabilitation program and follow-up. The EuroQol 5-Dimension 3-Level
(EQ-5D-3L) was used to measure the health-related quality of life.
Results: Of our participants, 38.4% could independently walk 13-years
ago, which increased to 51.2% presently. The orthotic usage decreased
from 48.7% to 25.6%, and the rate of continuing rehabilitation decreased
from 100% to 58.9%. The mean EQ-5D-3L score was 0.36±0.42, and the
mean EQ-visual analog scale score was 68±24.01.
Conclusions: Individuals with CP and their caregivers should be aware
that CP is a lifelong disease and their continuity in rehabilitation programs
should be encouraged. Independence in daily life activities should be
aimed and participation in social life should be ensured.
Anahtar Kelime: Serebral Palside Yaşam Kalitesi, Katılım ve Fonksiyonel Durum: 13 Yıl Takip Çalışması
Öz: Amaç: Serebral palsili (SP) bireylerin 13 yıllık izlem süresince
fonksiyonel durum, katılım ve yaşam kalitelerindeki değişimin
araştırılması amaçlanmıştır.
Yöntemler: Geçmiş veriler veritabanından elde edildi. Komorbiditeler,
mobilite durumu, ortez kullanımı, rehabilitasyon programı ve izlem
bilgileri sorgulandı. Sağlıkla ilişkili yaşam kalitesini ölçmek için EuroQol
5-Dimension 3-Level (EQ-5D-3L) kullanıldı.
Bulgular: On üç yıl önce katılımcıların %38,4’ü bağımsız
yürüyebiliyorken, günümüzde bu oran %51,2’ye yükselmişti. Ortez
kullanımının %48,7’den %25,6’ya, rehabilitasyona devam etme
oranının %100’den %58,9’a düştüğü tespit edildi. Ortalama EQ-5D-3L
skoru 0,36±0,42, ortalama EQ-vizüel analog skala skoru 68±24,01 idi.
Sonuçlar: SP’li bireyler ve bakım verenlerinde, SP’nin ömür boyu
süren bir hastalık olduğu farkındalığı yaratılmalı ve rehabilitasyon
programlarına devamlılıkları teşvik edilmelidir. Günlük yaşam
aktivitelerinde bağımsızlık hedeflenmeli, sosyal yaşama katılımları
sağlanmalıdır.
Anahtar Kelime: Belge Türü: Makale Makale Türü: Araştırma Makalesi Erişim Türü: Erişime Açık
- Richards CL, Malouin F. Cerebral palsy: definition, assessment and rehabilitation. Handb Clin Neurol. 2013;111:183-95.
- 2. Blum RW, Garell D, Hodgman CH, et al. Transition from child- centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14:570-6.
- 3. İçağasıoğlu A, Doğruoz Karatekin B, Mesci E, Yumusakhuylu Y, Murat S, Yasin Ş. Assessment of adult patients with cerebral palsy. Turk J Phys Med Rehabil. 2020;66:429-35.
- 4. Murphy KP, Molnar GE, Lankasky K. Employment and social issues in adults with cerebral palsy. Arch Phys Med Rehabil. 2000;81:807-11.
- 5. Hutchison J. College students who have cerebral palsy. A follow- up study of employment. Cereb Palsy J. 1968;29:3-7.
- 6. Cohen P, Kohn JG. Follow-up study of patients with cerebral palsy. West J Med. 1979;130:6-11.
- 7. Alriksson-Schmidt AI, Ahonen M, Andersen GL, et al. CP-North: living life in the Nordic countries? A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland. BMJ Open. 2019;9:e024438.
- 8. Thomsen OS. Cerebral palsy in Denmark 1951. Acta Psychiatr Neurol Scand. 1954;29:55-6.
- 9. Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001;33:337-43.
- 10. Dolan P. Modeling valuations for EuroQol health states. Med Care. 1997;35:1095-108.
- 11. Mozzi A, Meregaglia M, Lazzaro C, Tornatore V, Belfiglio M, Fattore G. A comparison of EuroQol 5-Dimension health-related utilities using Italian, UK, and US preference weights in a patient sample. Clinicoecon Outcomes Res. 2016;8:267-74.
- 12. Kahyaoğlu Süt H, Unsar S. Is EQ-5D a valid quality of life instrument in patients with acute coronary syndrome? Anatol J Cardiol. 2011;11:156-62.
- 13. Zhou T, Guan H, Yao J, Xiong X, Ma A. The quality of life in Chinese population with chronic non-communicable diseases according to EQ-5D-3L: a systematic review. Qual Life Res. 2018;27:2799-814.
- 14. Jarl J, Alriksson-Schmidt A, Rodby-Bousquet E. Health-related quality of life in adults with cerebral palsy living in Sweden and relation to demographic and disability-specific factors. Disabil Health J. 2019;12:460-6.
- 15. Bray N, Spencer LH, Edwards RT. Preference-based measures of health-related quality of life in congenital mobility impairment: a systematic review of validity and responsiveness. Health Econ Rev. 2020;10:9.
- 16. Himmelmann K, Sundh V. Survival with cerebral palsy over five decades in western Sweden. Dev Med Child Neurol. 2015;57: 762-7.
- 17. Brodin J, Fasth Å. Habilitation, support and service for young people with motor disabilities. A Swedish perspective. Int J Rehabil Res. 2001;24:309-16.
- 18. Andersson C, Mattsson E. Adults with cerebral palsy: a survey describing problems, needs, and resources, with special emphasis on locomotion. Dev Med Child Neurol. 2001;43:76-82.
- 19. Kokkonen J, Saukkonen AL, Timonen E, Serlo W, Kinnunen P. Social outcome of handicapped children as adults. Dev Med Child Neurol. 1991;33:1095-100.
- 20. Michelsen SI, Uldall P, Hansen T, Madsen M. Social integration of adults with cerebral palsy. Dev Med Child Neurol. 2006;48:643-9.
- 21. Park SK, Yoon JY, Henderson T. Factors affecting employment among people with mobility disabilities in South Korea. Int J Rehabil Res. 2007;30:19-25.
- 22. No authors listed. Prevalence and characteristics of children with cerebral palsy in Europe. Dev Med Child Neurol. 2002;44:633-40.
- 23. Nordmark E, Hagglund G, Lagergren J. Cerebral palsy in southern Sweden I. Prevalence and clinical features. Acta Paediatr. 2001;90:1271-6.
- 24. Yılmaz Yalçınkaya E, Hüner B, Dinçer U, Diraçoğlu D, Aydın R, İçağasıoğlu A. Demographic and Clinical Findings of Cerebral Palsy Patients in Istanbul: A Multicenter Study. Turk J Phys Med Rehabil. 2014;60:134-8.
- 25. Sun S, Irestig R, Burström B, Beijer U, Burström K. Health-related quality of life (EQ-5D) among homeless persons compared to a general population sample in Stockholm County, 2006. Scand J Public Health. 2012;40:115-25.
- 26. Lundh S, Nasic S, Riad J. Fatigue, quality of life and walking ability in adults with cerebral palsy. Gait Posture. 2018;61:1-6
| APA | KARATEKIN B, ICAGASIOGLU A (2022). Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. , 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| Chicago | KARATEKIN Bilinc DOGRUOZ,ICAGASIOGLU Afitap Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. (2022): 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| MLA | KARATEKIN Bilinc DOGRUOZ,ICAGASIOGLU Afitap Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. , 2022, ss.105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| AMA | KARATEKIN B,ICAGASIOGLU A Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. . 2022; 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| Vancouver | KARATEKIN B,ICAGASIOGLU A Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. . 2022; 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| IEEE | KARATEKIN B,ICAGASIOGLU A "Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study." , ss.105 - 112, 2022. 10.4274/MMJ.galenos.2022.54920 |
| ISNAD | KARATEKIN, Bilinc DOGRUOZ - ICAGASIOGLU, Afitap. "Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study". (2022), 105-112. https://doi.org/10.4274/MMJ.galenos.2022.54920 |
| APA | KARATEKIN B, ICAGASIOGLU A (2022). Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. Medeniyet Medical Journal, 37(1), 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| Chicago | KARATEKIN Bilinc DOGRUOZ,ICAGASIOGLU Afitap Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. Medeniyet Medical Journal 37, no.1 (2022): 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| MLA | KARATEKIN Bilinc DOGRUOZ,ICAGASIOGLU Afitap Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. Medeniyet Medical Journal, vol.37, no.1, 2022, ss.105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| AMA | KARATEKIN B,ICAGASIOGLU A Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. Medeniyet Medical Journal. 2022; 37(1): 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| Vancouver | KARATEKIN B,ICAGASIOGLU A Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study. Medeniyet Medical Journal. 2022; 37(1): 105 - 112. 10.4274/MMJ.galenos.2022.54920 |
| IEEE | KARATEKIN B,ICAGASIOGLU A "Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study." Medeniyet Medical Journal, 37, ss.105 - 112, 2022. 10.4274/MMJ.galenos.2022.54920 |
| ISNAD | KARATEKIN, Bilinc DOGRUOZ - ICAGASIOGLU, Afitap. "Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study". Medeniyet Medical Journal 37/1 (2022), 105-112. https://doi.org/10.4274/MMJ.galenos.2022.54920 |
