Association between functional performance and quality of life in patients with cerebral palsy from a specialized institute of category III-2 in Peru
DOI:
https://doi.org/10.58597/rpe.v3i1.74Keywords:
Cerebral palsy, Physical Functional Performance, Quality of Life, Children, AdolescentAbstract
Objective. To relate functional performance and quality of family life in children and adolescents with cerebral palsy from the Instituto Nacional de Salud del Niño during 2021. Materials and methods. A retrospective analytical study that analyzed 80 children and adolescents between 2 and 18 years old with cerebral palsy, in a non-probabilistic way, who attended the Physical Medicine and Rehabilitation Service for outpatient consultation. The Pediatric Evaluation of Disability Inventory and the Beach Center Family Quality of Life Scale adapted to Latin America were applied. Results. There were 56% males and a median age of 7 (3-9). The most frequent diagnoses were spastic hemiparesis (32%) and spastic quadriparesis (31%). Slight correlations were observed between functional performance and satisfaction with support for people with disabilities (rho = 0.25; p = 0.026). At the same time, self-care (rho = 0.26; p = 0.022) and social performance (rho = 0.26; p = 0.021) were associated with satisfaction with support for people with disabilities. Conclusion. Functional performance was associated with quality of life domains such as satisfaction with health and safety and support for people with disabilities.
Downloads
References
Patel DR, Neelakantan M, Pandher K, Merrick J. Cerebral palsy in children: a clinical overview. Transl Pediatr. 2020; 9(Suppl 1):S125-S135. Doi: 10.21037/tp.2020.01.01.
Graham H, Rosenbaum P, Paneth N. et al. Cerebral palsy. Nat Rev Dis Primers. 2016; 2:15082. Doi:10.1038/nrdp.2015.82.
Cans C. Surveillance of Cerebral Palsy in Europe. Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE). Dev Med Child Neurol. 2000;42(12):816-24. Doi: 10.1017/s0012162200001511.
Rosembaum 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. 2009;109:8–14. Doi:10.1111/j.1469-8749.2007.tb12610.x.
Pavão SL, dos Santos AN, de Oliveira AB, Rocha NACF. Functionality level and its relation to postural control during sitting-to-stand movement in children with cerebral palsy. Res Dev Disabil. 2014;35(2):506–11. Doi: 10.1016/j.ridd.2013.11.028
Park J, Hoffman L, Marquis J, Turnbull AP, Poston D, Mannan H, Wang M, Nelson LL. Toward assessing family outcomes of service delivery: validation of a family quality of life survey. J Intellect Disabil Res. 2003;47(Pt 4-5):367-84. doi: 10.1046/j.1365-2788.2003.00497.x.
Zuna N, Summers JA, Turnbull AP, Hu X, Xu S. Enhancing the Quality of Life of People with Intellectual Disabilities. Social Indicators Research Series. Theorizing About Family Quality of Life. Vol 41. Springer, Dordrecht. 2010. Doi: 10.1007/978-90-481-9650-0_15.
Daunhauer LA, Gerlach-McDonald B, Khetani MA. Chapter Five - Rules of “Engagement”: Addressing Participation and Functional Performance in Children with Intellectual and Developmental Disabilities. En: Hodapp RM, editor. Int Rev Res Dev Disabil. 2014. 47;151–84. Doi:10.1016/B978-0-12-800278-0.00005-1
World Health Organization. International classification of functioning, disability and health: children and youth version: ICF-CY. World Health Organization; 2007 [citado el 15 de octubre de 2020]. Disponible en: https://apps.who.int/iris/handle/10665/43737
Verdugo MA, Córdoba L, Gómez J. Spanish adaptation and validation of the Family Quality of Life Survey. J Intellect Disabil Res. 2005; 49(10): 794-8. Doi: 10.1111/j.1365-2788.2005.00754.x
Surender S, Gowda VK, Sanjay KS, Basavaraja GV, Benakappa N, Benakappa A. Caregiver-reported health-related quality of life of children with cerebral palsy and their families and its association with gross motor function: A South Indian study. J Neurosci Rural Pract. 2016;7(2):223–7. Doi: 10.4103/0976-3147.178657
Kołtuniuk A, Rozensztrauch A, Budzińska P, Rosińczuk J. The Quality of Life of Polish Children with Cerebral Palsy and the Impact of the Disease on the Family Functioning. J Pediatr Nurs. 2019;47:e75-e82. doi: 10.1016/j.pedn.2019.05.011.
Schertz M, Karni-Visel Y, Tamir A, Genizi J, Roth D. Family quality of life among families with a child who has a severe neurodevelopmental disability: Impact of family and child socio-demographic factors. Res Dev Disabil. 2016;53-54:95-106. Doi: 10.1016/j.ridd.2015.11.028.
Blasco M, García-Galant M, Laporta-Hoyos O, Ballester-Plané J, Jorba-Bertran A, Caldú X, et al. Factors Related to Quality of Life in Children With Cerebral Palsy. Pediatr Neurol. 2023;141:101-108. doi: 10.1016/j.pediatrneurol.2023.01.006.
Gannotti ME, Cruz C. Content and Construct Validity of a Spanish Translation of the Pediatric Evaluation of Disability Inventory for Children Living in Puerto Rico. Physical & Occupational Therapy In Pediatrics. 2001; 20(4):7-24. doi:10.1080 /J006v20n04_02.
Blasco M, García-Galant M, Laporta-Hoyos O, Ballester-Plané J, Jorba-Bertran A, Caldú X, et al. Factors Related to Quality of Life in Children With Cerebral Palsy. Pediatr Neurol. 2023; 141:101-8. Doi: 10.1016/j.pediatrneurol.2023.01.006
Brew S, Langan E, Link-Dudek A, Walsh R, Ehrlich-Jones L. Measurement Characteristics and Clinical Utility of the Pediatric Evaluation of Disability Inventory in Children With Cerebral Palsy. Arch Phys Med Rehabil. 2018;99(6):1251–2. Doi: 10.1016/j.apmr.2018.02.006.
Dickinson HO, Parkinson KN, Ravens-Sieberer U, Schirripa G, Thyen U, Arnaud C, Beckung E, Fauconnier J, McManus V, Michelsen SI, Parkes J, Colver AF. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet. 2007;369(9580):2171-2178. doi: 10.1016/S0140-6736(07)61013-7.
Tsibidaki A. Family functioning and strengths in families raising a child with cerebral palsy. Res Dev Disabil. 2020;106:103767. doi: 10.1016/j.ridd.2020.103767.
Mandleco B, Olsen SF, Dyches T, Marshall E. The Relationship between Family and Sibling Functioning in Families Raising a Child with a Disability. J Fam Nurs. 2003;9(4):365–96. Doi: 10.1177/107484070325832
Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005;115(6):e626-36. Doi: 10.1542/peds.2004-1689.
Assis-Madeira EA, Carvalho SG, Blascovi-Assis SM. Functional performance of children with cerebral palsy from high and low socioeconomic status. Rev Paul Pediatr. 2013;31(1):51-7. Doi: 10.1590/s0103-05822013000100009
Perez EM. Cambios psicosociales, salud y calidad de vida de padres de niños con parálisis cerebral. Rev Neuropsiquiatr. 2019;82(4):258–65. Doi: 10.20453/rnp.v82i4.3647
Mohammed FM, Ali SM, Mustafa MA. Quality of life of cerebral palsy patients and their caregivers: A cross sectional study in a rehabilitation center Khartoum-Sudan (2014 - 2015). J Neurosci Rural Pract. 2016;7(3):355-61. Doi: 10.4103/0976-3147.182778.
Downloads
Published
Issue
Section
License
Copyright (c) 2024 Lilian Martínez-Álvarez, Rosario del Pilar Rivera-Machuca, Andrea Mercedes Lavado-Avendaño
This work is licensed under a Creative Commons Attribution 4.0 International License.
