Options for Monitoring and Evaluating the Quality of Life in Children and Adolescents with Epilepsy Worldwide and in the Czech Republic
Authors:
D. Brabcová 1; J. Kohout 2; P. Kršek 3
Authors place of work:
Katedra psychologie, Fakulta pedagogická, Západočeská univerzita v Plzni
1; Katedra matematiky, fyziky a technické výchovy, Fakulta pedagogická, Západočeská univerzita v Plzni
2; Klinika dětské neurologie 2. LF UK a FN v Motole, Praha
3
Published in the journal:
Cesk Slov Neurol N 2015; 78/111(4): 401-405
Category:
Review Article
Summary
Health-related quality of life represents a highly-studied multidimensional concept with many practical implications. The aim of this paper is to introduce available instruments enabling valid measurement of this concept in children and adolescents with epilepsy. Attention is paid to psychometric properties of the instruments and to certain methodological issues that should be taken into consideration during their use in practice. Current situation in the Czech Republic is also discussed and possible next steps in further research in this field are briefly outlined.
Key words:
quality of life – children – epilepsy – psychometric properties
The authors declare they have no potential conflicts of interest concerning drugs, products, or services used in the study.
The Editorial Board declares that the manuscript met the ICMJE “uniform requirements” for biomedical papers.
Zdroje
1. Komárek V. Epileptické záchvaty a syndromy. Praha: Galén 1997.
2. Mareš J. Problémy s pojetím pomu kvalita života a s jeho definováním. In: Mareš J (ed.). Kvalita života u dětí a dospívajících I. Brno: MSD 2006: 29– 37.
3. Devinsky O, Cramer JA. Introduction: quality of life in epilepsy. Epilepsia 1993; 34(4): 1– 3.
4. Cramer JA. A clinimetric approach to assessing quality of life in epilepsy. Epilepsia 1993; 34 (Suppl 4): S8– S13.
5. Mareš J, Bischopová J, Ježek S. Kvalita života u dětí a dospívajících s epilepsií: předběžné sdělení. In: Mareš J (ed.). Kvalita života u dětí a dospívajících III. Brno: MSD 2008: 203– 218.
6. Solans M, Pane S, Estrada MD, Serra‑ Sutton V, Berra S, Herdman M et al. Health‑related quality of life measurement in children and adolescents: a systematic review of generic and disease‑ specific instruments. Value Health 2008; 11(4): 742– 764. doi: 10.1111/ j.1524‑ 4733.2007.00293.x.
7. Fastenau PS, Shen J, Dunn DW, Austin JK. Academic underachievement among children with epilepsy: proportion exceeding psychometric criteria for learning disability and associated risk factors. J Learn Disabil 2008; 41(3): 195– 207. doi: 10.1177/ 0022219408317548.
8. Reilly C, Neville BR. Academic achievement in children with epilepsy: a review. Epilepsy Res 2011; 97(1– 2): 112– 123. doi: 10.1016/ j.eplepsyres.2011.07.017.
9. McEwan MJ, Espie CA, Metcalfe J. A systematic review of the contribution of qualitative research to the study of quality of life in children and adolescents with epilepsy. Seizure 2004; 13(1): 3– 14.
10. McEwan MJ, Espie CA, Metcalfe J, Brodie MJ, Wilson MT. Quality of life and psychosocial development in adolescents with epilepsy: a qualitative investigation using focus group methods. Seizure 2004; 13(1): 15– 31.
11. Moffat C, Dorris L, Connor L, Espie CA. The impact of childhood epilepsy on quality of life: a qualitative investigation using focus group methods to obtain children’s perspectives on living with epilepsy. Epilepsy Behav 2009; 14(1): 179– 189. doi: 10.1016/ j.yebeh.2008.09.025.
12. Kerr C, Nixon A, Angalakuditi M. The impact of epilepsy on children and adult patients’ lives: development of a conceptual model from qualitative literature. Seizure 2011; 20(10): 764– 774. doi: 10.1016/ j.seizure.2011.07.007.
13. Ronen GM, Streiner DL, Rosenbaum P. Health‑related quality of life in children with epilepsy: development and validation of self‑ report and parent proxy measures. Epilepsia 2003; 44(4): 598– 612.
14. Austin JK, Smith MS, Risinger MW, McNelis AM. Childhood epilepsy and asthma: comparison of quality of life. Epilepsia 1994; 35(3): 608– 615.
15. Austin JK, Huster GA, Dunn DW, Risinger MW. Adolescents with active or inactive epilepsy or asthma: a comparison of quality of life. Epilepsia 1996; 37(12): 1228– 1238.
16. Varni JW, Seid M, Kurtin PS. PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Med Care 2001; 39(8): 800– 812.
17. Ravens‑ Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Power M et al. The KIDSCREEN 52 quality of life measure for children and adolescents: psychometric results from a cross cultural survey in 13 European countries. Value Health 2008; 11(4): 645– 658. doi: 10.1111/ j.1524‑ 4733.2007.00291.x.
18. Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C. Development of the quality of life in epilepsy inventory for adolescents: the QOLIE‑ AD‑ 48. Epilepsia 1999; 40(8): 1114– 1121.
19. Cowan J, Baker GA. A review of subjective impact measures for use with children and adolescents with epilepsy. Qual Life Res 2004; 13(8): 1435– 1443.
20. Streiner DL. Starting at the beginning: an introduction to coefficient alpha and internal consistency. J Pers Assess 2003; 80(1): 99– 103.
21. Fayers PM, Machin D (eds). Quality of life: assessment, analysis and interpretation. New York: Wiley 2001.
22. American Educational Research Association, American Psychological Association, National Council on Measurement in Education. Standards for educational and psychological testing. Washington, DC: American Educational Research Association 1999.
23. Fayers PM, Hand DJ. Factor analysis, causal indicators and quality of life. Qual Life Res 1997; 6(2): 139– 150.
24. Bullinger M. Indices versus profiles – advantages and disadvantages. In: Walker SR, Rosser RM (eds). Quality of life assessment. Key issues in the 1990s. Dordrecht: Kluwer 1993: 209– 220.
25. Sabaz M, Cairns DR, Lawson JA, Nheu N, Bleasel AF, Bye AM. Validation of a new quality of life measure for children with epilepsy. Epilepsia 2000; 41(6): 765– 774.
26. Sintonen H. The 15D instrument of health‑related quality of life: properties and applications. Ann Med 2001; 33(5): 328– 336.
27. Cramer JA, Westbrook LE, Devinsky O, Perrine K, Glassman MB, Camfield C. Development of the quality of life in epilepsy inventory for adolescents: the QOLIE‑ AD‑ 48. Epilepsia 1999; 40(8): 1114– 1121.
28. Russell LB, Hubley A. Importance ratings and weighting: old concerns and new perspectives. Int J Test 2005; 5(2): 105– 130.
29. Hsieh CM. Should we give up domain importance weighting in QoL measures? Soc Indic Res 2012; 108(1): 99– 109.
30. Moráň M. Praktická epileptologie. Praha: Triton 2007.
31. Taylor RS, Sander JW, Taylor RJ, Baker GA. Predictors of health‑related quality of life and costs in adults with epilepsy: a systematic review. Epilepsia 2011; 52(12): 2168– 2180. doi: 10.1111/ j.1528‑ 1167.2011.03213.x.
32. Aswin M, Rakesh PS, Pricilla RA, Manjunath K, Jacob KS,Prasad J. Determinants of quality of life among people with epilepsy attending a secondary care rural hospital in south India. J Neurosci Rural Pract 2013; 4 (Suppl 1): S62– S66. doi: 10.4103/ 0976‑ 3147.116467.
33. Ribeiro JL, Mendonca D, Martins da Silva A. Impact of epilepsy on QOL in a Portuguese population: exploratory study. Acta Neurol Scand 1998; 97(5): 287– 294.
34. Brabcova D, Kohout J. What are the predictors of quality of life of people with epilepsy? J Neurosci Rural Pract 2013; 4 (Suppl 1): S5– S6. doi: 10.4103/ 0976‑ 3147.116421.
35. Camfield C, Breau L, Camfield P. Impact of pediatric epilepsy on the family: a new scale for clinical and research use. Epilepsia 2000; 42(1): 104– 112.
36. Camfield C, Breau L, Camfield P. Assessing the impact of pediatric epilepsy and concomitant behavioral, cognitive, and physical/ neurologic disability: impact of Childhood Neurologic Disability Scale. Dev Med Child Neurol 2003; 45(3): 152– 159.
37. Buck D, Smith M, Appleton R, Baker GA, Jacoby A. The development and validation of the Epilepsy and Learning Disabilities Quality of Life (ELDQOL) scale. Epilepsy Behav 2007; 10(1): 38– 43.
38. Rebok G, Riley A, Forrest C, Starfield B, Green B, Robertson J et al. Elementary school‑ aged children’s reports of their health: a cognitive interviewing study. Qual Life Res 2001; 10(1): 59– 70.
39. Barbosa F, Guerreiro MM, de Souza E. The Brazilian version of the Quality of Life in Epilepsy Inventory for Adolescents: translation, validity, and reliability. Epilepsy Behav 2008; 13(1): 218– 222. doi: 10.1016/ j.yebeh.2008.03.005.
40. Benavente IA, Morales C, Rubio E. Adaptación transcultural del cuestionario de medida de calidad de vida (QOLIE‑ AD‑ 48) en adolescentes epilépticos. Psiquis 2002; 23(6): 14– 25.
41. Stevanovic D, Lozanovic‑ Miladinovic D, Jovic N, Sarenac M. The Serbian QOLIE‑ AD‑ 48: translation, cultural adaptation and preliminary psychometric evaluation. Epilepsy Behav 2005; 7(2): 240– 245.
42. Ficker DM, Privitera M, Krauss G, Kanner A, Moore JL, Glauser T. Improved tolerability and efficacy in epilepsy patients with extended‑ release carbamazepine. Neurology 2005; 65(4): 593– 595.
43. Jakovljevic MB, Jankovic SM, Jankovic SV, Todorovic N.Inverse correlation of valproic acid serum concentrations and quality of life in adolescents with epilepsy. Epilepsy Res 2008; 80(2– 3): 180– 183. doi: 10.1016/ j.eplepsyres.2008.04.006.
44. Zupanc ML, Rubio EJ, Werner RR, Schwabe MJ, Mueller WM, Lew SM et al. Epilepsy surgery outcomes: quality of life and seizure control. Pediatric Neurology 2010; 42(1): 12– 20. doi: 10.1016/ j.pediatrneurol.2009.07.018.
45. Sabaz M, Lawson JA, Cairns DR, Duchowny MS, Resnick TJ, Dean PM et al. Validation of the Quality of Life in Childhood Epilepsy Questionnaire in American epilepsy patients. Epilepsy Behav 2003; 4(6): 680– 691.
46. Mathiak KA, Łuba M, Mathiak K, Karzel K, Wolanczyk T,Szczepanik E et al. Quality of life in childhood epilepsy with lateralized epileptogenic foci. BMC Neurol 2010; 10(1): 69– 75. doi: 10.1186/ 1471‑ 2377‑ 10‑ 69.
47. Sabaz M, Cairns DR, Lawson JA, Bleasel AF, Bye AE. The health‑related quality of life of children with refractory epilepsy: a comparison of those with and without intellectual disability. Epilepsia 2001; 42(5): 621– 628.
48. Komarek V, Smidova J. The psychosocial impact of epilepsy in Czech children: what are causative factors of differences during ten years interval? Epileptic Disord 2007; 9 (Suppl 1): S2– S8. doi: 10.1684/ epd.2008.0157.
49. Brabcova D, Lovasova V, Kohout J, Zarubova J, Komarek V. Improving the knowledge of epilepsy and reducing epilepsy‑related stigma among children using educational video and educational drama – a comparison of the effectiveness of both interventions. Seizure 2013; 22(3): 179– 184. doi: 10.1016/ j.seizure.2012.11.017.
50. Tlusta E, Kubena A, Salek S, Vlcek J. Psychometric properties of the Czech version of the Quality of Life in Epilepsy Inventory (QOLIE‑ 31). Epilepsy Behav 2007; 10(3): 407– 411.
51. Cramer J, Perrine K, Devinsky O, Bryant‑ Comstock L, Meador K, Hermann B. Development and cross‑ cultural translations of a 31- item quality of life in epilepsy inventory. Epilepsia 1998; 39(1): 81– 88.
52. Brabcova D, Krsek P, Kohout J, Zarubova J. Psychometric properties of the modified Czech version of the children selfreport quality of life measure for children with epilepsy (CHEQOL‑ 25). Epilepsy Behav 2014; 33(4): 31– 38. doi: 10.1016/ j.yebeh.2014.02.013.
53. Brabcová D, Kršek P, Kohout J, Zárubová J. Adaptace dotazníku kvality života u dětí s epilepsií CHEQOL‑ 25. In: Majerová E, Procházka R, Dolejš M, Skopal O (eds). PHD EXISTENCE IV.: Česko‑ slovenská psychologická konference (nejen) pro doktorandy a o doktorandech. Olomouc: Univerzita Palackého v Olomouci 2014: 10– 21.
54. Ronen GM, Streiner DL, Boyle MH, Cunnigham CE, Lach L, Verhey LH et al. Outcomes trajectories in children with epilepsy: hypotheses and methodology of a Canadian longitudinal observational study. Pediatr Neurol 2014; 50(1): 38– 48. doi: 10.1016/ j.pediatrneurol.2013.08.024.
Štítky
Paediatric neurology Neurosurgery NeurologyČlánok vyšiel v časopise
Czech and Slovak Neurology and Neurosurgery
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