Quality of Life, Participation, and Functional Status in Cerebral Palsy: A 13-year Follow-up Study

Overview

Journal Medeni Med J

Publisher Galenos Publishing House

Specialty General Medicine

Date 2022 Mar 21

PMID 35306797

Authors

Bilinc Dogruoz Karatekin

Afitap Icagasioglu

Affiliations

Soon will be listed here.

Abstract

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.

References

Park S, Yoon J, Henderson T . Factors affecting employment among people with mobility disabilities in South Korea. Int J Rehabil Res. 2007; 30(1):19-25. DOI: 10.1097/MRR.0b013e328012c990. View

Icagasioglu A, Karatekin B, Mesci E, Yumusakhuylu Y, Murat S, Yasin S . Assessment of adult patients with cerebral palsy. Turk J Phys Med Rehabil. 2020; 66(4):429-435. PMC: 7756828. DOI: 10.5606/tftrd.2020.5614. View

Bray N, Spencer L, Tudor Edwards R . 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(1):9. PMC: 7175543. DOI: 10.1186/s13561-020-00270-3. View

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(2):76-82. DOI: 10.1017/s0012162201. View

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(11):2799-2814. PMC: 6208588. DOI: 10.1007/s11136-018-1928-y. View

Kokkonen J, Saukkonen A, Timonen E, Serlo W, Kinnunen P . Social outcome of handicapped children as adults. Dev Med Child Neurol. 1991; 33(12):1095-100. DOI: 10.1111/j.1469-8749.1991.tb14832.x. View

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. PMC: 4912314. DOI: 10.2147/CEOR.S98226. View

Richards C, Malouin F . Cerebral palsy: definition, assessment and rehabilitation. Handb Clin Neurol. 2013; 111:183-95. DOI: 10.1016/B978-0-444-52891-9.00018-X. View

Brodin J, Fasth A . Habilitation, support and service for young people with motor disabilities. A Swedish perspective. Int J Rehabil Res. 2002; 24(4):309-16. DOI: 10.1097/00004356-200112000-00007. View

10.

Alriksson-Schmidt A, Ahonen M, Andersen G, Eggertsdottir G, Haula T, Jahnsen R . 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(10):e024438. PMC: 6797311. DOI: 10.1136/bmjopen-2018-024438. View

11.

Sun S, Irestig R, Burstrom B, Beijer U, Burstrom 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(2):115-25. DOI: 10.1177/1403494811435493. View

12.

Lundh S, Nasic S, Riad J . Fatigue, quality of life and walking ability in adults with cerebral palsy. Gait Posture. 2017; 61:1-6. DOI: 10.1016/j.gaitpost.2017.12.017. View

13.

Dolan P . Modeling valuations for EuroQol health states. Med Care. 1997; 35(11):1095-108. DOI: 10.1097/00005650-199711000-00002. View

14.

Kahyaoglu Sut H, Unsar S . Is EQ-5D a valid quality of life instrument in patients with acute coronary syndrome?. Anadolu Kardiyol Derg. 2011; 11(2):156-62. DOI: 10.5152/akd.2011.037. View

15.

Blum R, GARELL D, HODGMAN C, Jorissen T, Okinow N, Orr D . 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(7):570-6. DOI: 10.1016/1054-139x(93)90143-d. View

16.

THOMSEN O . Cerebral palsy in Denmark 1951. Acta Psychiatr Neurol Scand. 1954; 29(1):55-6. View

17.

Rabin R, de Charro F . EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001; 33(5):337-43. DOI: 10.3109/07853890109002087. View

18.

. Prevalence and characteristics of children with cerebral palsy in Europe. Dev Med Child Neurol. 2002; 44(9):633-40. View

19.

Hutchison J . College students who have cerebral palsy. A follow-up study of employment. Cereb Palsy J. 1968; 29(3):3-7. View

20.

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(3):460-466. DOI: 10.1016/j.dhjo.2019.02.002. View