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Health-Related Quality of Life and Its Relationship to Neurological Outcome in Child Survivors of Stroke

Published online by Cambridge University Press:  07 November 2014

Abstract

Background: Ischemic stroke during infancy and childhood has the potential to result in neurological impairments and affect a child's ability to function at home, school, and play. There are limited data on the effect of ischemic stroke on quality of life (QOL) of child survivors of ischemic stroke.

Objective: To examine parent and child perspectives on QOL and examine factors that correlate with reduced QOL for child survivors of stroke.

Methods: A prospective single-center cohort design was used. Participants included children 2–18 years of age surviving ischemic stroke. The Pediatric Quality of Life 4.0 Generic Inventory Scale (PedsQL) parent proxy -report (2–18 years of age) and child self-report (5–18 years of age) were completed by participants. Scores were compared with standardized normative data of healthy children and those with chronic medical conditions. Neurological deficits were measured with the Pediatric Stroke Outcome Measure, a standardized evaluation for children. The relationships between stroke type, neurological deficit, and health-related quality of life (HRQOL) were examined.

Results: We assessed the QOL in 84 children with arterial ischemic stroke and 16 with cerebral sinovenous thrombosis at a mean age of 8.4 (4.12) years; 4.4 (2.93) years after their stroke. Results showed that both the parent-proxy and child self-report HRQOL scores were significantly reduced (P<.01) compared with normative data of healthy children. Of greatest concern for both parents and children was the effect of stroke on school, followed by its impact on emotional and social functions. In contrast to other studies, scores in physical domain were better than those in the psychosocial domain. Multivariate analysis showed that of neurological deficits after stroke was a significant predictor of poor HRQOL (P<. 05). The children with poor neurological recovery had the lowest mean PedsQL scores and their QOL was significantly poorer compared with normative data of children with chronic health, conditions (ie, diabetes, cancer).

Conclusion: The PedsQL appears to be a promising assessment tool of HRQOL for children following stroke. Both parent and child perspectives should be included because of the potential for there to be significant differences in perspectives. Although severity of neurological outcome is a significant predictor of reduced HRQOL, it accounted for a small proportion of variance in QOL scores. Further research is required to delineate other factors that are significant predictors of outcome.

Type
Original Research
Copyright
Copyright © Cambridge University Press 2004

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References

REFERENCES

1.deVeber, GA, MacGregor, D, Curtis, R, Mayank, S. Neurological outcome in survivors of childhood arterial ischemic stroke and sinovenous thrombosis. J Child Neurol. 2000;15:316324.CrossRefGoogle ScholarPubMed
2.deVeber, GA, Roach, ES, Riela, AR, Wizniter, M. Stroke in children. Semin Pediatr Neurol. 2000;7:309317.CrossRefGoogle ScholarPubMed
3.Ganesan, V, Hogan, A, Shack, N, Gordon, A, Isaacs, E, Kirkham, FJ. Outcome after stroke in childhood. Dev Med Child Neurol. 2000;42:455461.CrossRefGoogle ScholarPubMed
4.King, RB. Quality of life after stroke. Stroke. 1996;27:14671472.CrossRefGoogle ScholarPubMed
5.Tengs, TO, Yu, M, Luistro, E. Health-related quality of life after stroke: a comprehensive review. Stroke. 2001;32:964971.CrossRefGoogle ScholarPubMed
6.Gordon, AL, Ganesan, V, Towell, A, Kirkham, FJ. Functional outcome following stroke in children. J Child Neurol. 2002;17:429434.CrossRefGoogle ScholarPubMed
7.Han, CJ, Lynch, JK, Lee, LE, Nelson, KB. Health related quality of life in children with stroke. Stroke. 2004;35;1:288.Google Scholar
8.Ronen, GM, Streiner, DL, Rosenbaum, P. Health-related quality of life in childhood epilepsy: moving beyond seizure control with minimal adverse effects. Health Qual Life Outcomes. 2003;1:110.CrossRefGoogle ScholarPubMed
9.Osier, E, Morse, R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res. 2001;10:347357.Google Scholar
10.Rapley, M. Quality of Life Research: A Critical Introdution. Thousand Oaks, Calif: Sage Publications; 2003.CrossRefGoogle Scholar
11.Raphael, D. Defining quality of life: eleven debates concerning its measurement. In: Renwick, R, Brown, I, Nagler, M, eds. Quality of Life in Health Promotion and Rehabilitation: Conceptual Approaches, Issues, and Applications. Thousand Oaks, Calif: Sage Publications; 1996;146165.Google Scholar
12.Renwick, R, Friefeld, . Quality of life and rehabilitation. In: Renwick, R, Brown, I, Nagler, M, eds. Quality of Life in Health Promotion and Rehabilitation: Conceptual Approaches, Issues, and Applications. Thousand Oaks, Calif: Sage Publications; 1996;2638.Google Scholar
13.Varni, JW, Seid, M, Kurtin, PS. The PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventoty Version 4.0 Generic Core Scales in healthy and patient populations. Med Care. 2001;39:800812.CrossRefGoogle ScholarPubMed
14.Varni, JW, Seid, M, Rode, CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999;37:126139.CrossRefGoogle ScholarPubMed
15.Varni, JW, Seid, M, Smith Knight, T, Uzark, K, Szer, IS. The PedsQL 4.0 Generic Core Scales: sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002;25:175193.CrossRefGoogle ScholarPubMed
16.Varni, JW. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3:329341.2.0.CO;2>CrossRefGoogle ScholarPubMed
17.Varni, JW, Burwinkle, TM, Katz, ER, Meeske, K, Dickinson, P. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002;94:20902106.CrossRefGoogle ScholarPubMed
18.Varni, JW, Seid, M, Smith Knight, T, Burwinkle, T, Brown, J, Szer, IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory Generic Core Scales and Rheumatology Module. Arthritis Rheum. 2002;46:714725.CrossRefGoogle ScholarPubMed
19.Hallstrand, TS, Curtis, JR, Aitken, ML, Sullivan, SD. Quality of life in adolescents with mild asthma. Pediatr Pulmonol. 2003;36:536543.CrossRefGoogle ScholarPubMed
20.Varni, JW, Burwinkle, TM, Jacobs, JR, Gottschalk, M, Kaufman, F, Jones, KL. The PedsQL in type 1 and type 2 diabetes: reliability and validity of the Pediatric Quality of Life Inventory Genetic Core Scales and Type 1 Diabetes Module. Diabetes Care. 2003;26;3:631637.CrossRefGoogle Scholar
21.Kitchen, L, Friefeld, S, Anderson, P, Curtis, R, MacGregor, D, deVeber, G. A validation study of the Pediatric Stroke Outcome Measure. Ann Neurol. 2002.Google Scholar
22.Hollingshead, AB. Four-Factor Index of Social Status [doctoral thesis]. New Haven, CT: Department of Sociology, Yale University; 1975.Google Scholar
23.deVeber, G, Andrews, M, Adams, C, and colleagues Cerebral sinovenbous thrombosis in children. N Engl J Med. 345:417423.CrossRefGoogle Scholar
24.Dennis, M, Barnes, MA, Wilkinson, M, Humphreys, RP. How children with head injury represent real and deceptive emotion in narratives. Brain Lang. 1998;61:450483.CrossRefGoogle ScholarPubMed
25.Austin, J, Huster, GA, Dunn, DW, Risinger MW Adolescents with active or inactive epilepsy or asthma: a compatison of quality of life. Epilepsia. 1996;37:12281238.CrossRefGoogle ScholarPubMed
26.McEwen, S, Mayo, N, Wood-Dauphnee, S. Inferring quality of life from performance-based assessments. Disabil Rehabil. 2000;22;10:456463.CrossRefGoogle ScholarPubMed
27.Sabas, M, Cairns, Dr, Lawson, JA, Bleasel, AF, Bye, AM. The health-related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia. 2001;42:621628.CrossRefGoogle Scholar
28.de, Haan R, Limburg, M, Van der Meulen, J, Jacobs, H, Aaronson, N. Quality of life after stroke: impact of stroke type and lesion location. Stroke. 1995;26:402408.Google Scholar
29.Bjornson, KF, McLaughin, JF. The measurement of health-related quality of life (HRQL) in children with cerebral palsy. Eur J Neural. 2001;8:183193.CrossRefGoogle ScholarPubMed
30.Liptak, GS, O'Donnell, M, Conway, M, et al.Health status of children with moderate to severe cerebral palsy. Dev Med Child Neurol. 2001;43:364370.CrossRefGoogle ScholarPubMed
31.Stancin, T, Drotar, D, Taylor, G, Yeates, KO, Wade, SL, Minich, N. Health-related quality of life of children and adolescents after brain injury. Pediatrics. 2002;109:18.CrossRefGoogle ScholarPubMed
32.Sawyer, MG, Whaites, L, Rey, JM, Hazell, PL, Gtaetz, BW, Baghurst, P. Health-related quality of life of children and adolescents with mental disotders. J Am Acad Chid Adolesc Psychiatry. 2002;41:530537.CrossRefGoogle Scholar
33.Palermo, TM, Schwartz, L, Drotar, D, McGowan, K. Parental report of health-related quality of life in children with sickle cell disease. J Behav Med. 2002;25:269283.CrossRefGoogle ScholarPubMed
34.Friedland, J, McColl, M. Social support and psychosocial dysfunction after stroke: buffering effects in a community sample. Arch Plre Med Rehabil. 1987;68:475480.Google Scholar