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ORIGINAL PAPER
Health-related quality of life in children with juvenile idiopathic arthritis – child’s and parent’s point of view
 
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Submission date: 2016-08-29
 
 
Final revision date: 2016-10-07
 
 
Acceptance date: 2016-10-17
 
 
Online publication date: 2016-11-28
 
 
Publication date: 2016-10-28
 
 
Reumatologia 2016;54(5):243-250
 
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ABSTRACT
Objectives: To assess the quality of life (QoL) of children suffering from juvenile idiopathic arthritis (JIA) in Poland, to compare QoL of children with JIA and healthy children, and to compare children’s and parents’ assessments of QoL.
Material and methods: The KIDSCREEN-52 questionnaire (children’s and parents’ version) was used to assess the quality of life. The QoL in JIA patients and healthy peers from European and Polish reference groups was compared by the t-test. The Bland-Altman method was used to evaluate child and parent assessment agreement.
Results: Eighty-nine questionnaires were obtained from children (median age: 14 years; 62% female; JIA history longer than 1 year) and 84 questionnaires from parents. The QoL of JIA patients was lower than in healthy peers from the European reference group in terms of physical well-being (p < 0.001), psychological well-being (p = 0.011), autonomy (p < 0.001) and social support and peers (p < 0.001). The QoL of JIA patients compared with the QoL of children from the Polish reference group was lower only in terms of physical well-being (p < 0.001), whereas it was higher in terms of moods and emotions (p = 0.023), parent relations and home life (p = 0.005) and financial resources (p < 0.001). In most terms the assessment performed by the parent was lower than the child’s. The most significant differences were observed for physical well-being (p < 0.001), psychological well-being (p = 0.016), and self-perception (p = 0.013).
Conclusions: The present study is the first assessment of QoL of JIA children in Poland. In our study the quality of life in JIA children was lower than in healthy peers. Discrepancies between the assessment of the child’s QoL performed by the child and the parent were found. Both assessments should be taken into account in clinical practice as well as in research studies.
 
REFERENCES (31)
1.
Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948.
 
2.
Oleś M. Jakość życia dzieci i młodzieży w zdrowiu i w chorobie. Wydawnictwo KUL, Lublin 2010.
 
3.
Luca NJ, Feldman BM. Health outcomes of pediatric rheumatic diseases. Best Pract Res Clin Rheumatol 2014; 28: 331-350.
 
4.
Calvert M, Blazeby J, Altman DG, et al. Reporting of patientreported outcomes in randomized trials: the CONSORT PRO extension. JAMA 2013; 309: 814-822.
 
5.
Ravelli A, Martini A. Juvenile idiopathic arthritis. Lancet 2007; 369: 767-778.
 
6.
Consolaro A, Negro G, Lanni S, et al. Toward a treat-to-target approach in the management of juvenile idiopathic arthritis. Clin Exp Rheumatol 2012; 30 (4 Suppl 73): S157-S162.
 
7.
Shaw KL, Southwood TR, Duffy CM, McDonagh JE. Healthrelated quality of life in adolescents with juvenile idiopathic arthritis. Arthritis Rheum 2006; 55: 199-207.
 
8.
Ravens-Sieberer U, Gosch A, Rajmil L, et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res 2005; 5: 353-364.
 
9.
The KIDSCREEN Group Europe. The KIDSCREEN Questionnaires – Quality of life questionnaires for children and adolescents. Handbook. Lengerich: Pabst Science Publishers 2006.
 
10.
Gutiérrez-Suárez R, Pistorio A, Cespedes Cruz A, et al. Pediatric Rheumatology International Trials Organisation (PRINTO). Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study. Rheumatology (Oxford) 2007; 46: 314-320.
 
11.
Dobrucka-Janeczek I, Rutkowska-Sak L. Osobowość i przystosowanie dzieci chorych na przewlekłe choroby reumatyczne. Reumatologia 2012; 50: 211-218.
 
12.
Sawyer MG, Whitham JN, Roberton DM, et al. The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology (Oxford) 2004; 43: 325-330.
 
13.
Tong A, Jones J, Craig JC, et al. Children’s experiences of living with juvenile idiopathic arthritis: a thematic synthesis of qualitative studies. Arthritis Care Res (Hoboken) 2012; 64: 1392-1404.
 
14.
Haverman L, Grootenhuis MA, van den Berg JM, et al. Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a Web-based survey. Arthritis Care Res (Hoboken) 2012; 64: 694-703.
 
15.
Kwon HJ, Kim YL, Lee SM. Relation between functional ability and health-related quality of life of children with juvenile rheumatoid arthritis. J Phys Ther Sci 2015; 27: 837-840.
 
16.
Békési A, Török S, Kökönyei G, et al. Health-related quality of life changes of children and adolescents with chronic disease after participation in therapeutic recreation camping program. Health Qual Life Outcomes 2011; 9: 43.
 
17.
Sharpe D, Rossiter L. Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol 2002; 27: 699-710.
 
18.
Besier T, Hölling H, Schlack R, et al. Impact of a family-oriented rehabilitation programme on behavioural and emotional problems in healthy siblings of chronically ill children. Child Care Health Dev 2010; 36: 686-695.
 
19.
Hentinen M, Kyngäs H. Factors associated with the adaptation of parents with a chronically ill child. J Clin Nurs 1998; 7: 316-324.
 
20.
Chaves C, Hervas G, Vazquez C. Granting wishes of seriously ill children: Effects on parents’ well-being. J Health Psychol 2016; 21: 2314-2327.
 
21.
Oleś M. Subiektywna jakość życia u nastolatków przewlekle chorych – analiza na przykładzie cukrzycy typu 1. Psychologia Jakości Życia 2010; 9: 21-45.
 
22.
Brunner HI, Klein-Gitelman MS, Miller MJ, et al. Health of children with chronic arthritis: relationship of different measures and the quality of parent proxy reporting. Arthritis Rheum 2004; 51: 763-773.
 
23.
Lal SD, McDonagh J, Baildam E, et al. Agreement between proxy and adolescent assessment of disability, pain, and well-being in juvenile idiopathic arthritis. J Pediatr 2011; 158: 307-312.
 
24.
April KT, Feldman DE, Platt RW, et al. Comparison between Children with Juvenile Idiopathic Arthritis (JIA) and their parents concerning perceived Quality of Life. Qual Life Res 2006; 15: 655-661.
 
25.
Palermo TM, Zebracki K, Cox S, et al. Juvenile idiopathic arthritis: parent-child discrepancy on reports of pain and disability. J Rheumatol 2004; 31: 1840-1846.
 
26.
Vanoni F, Suris JC, von Scheven-Gęte A, et al. The difference of disease perception by juvenile idiopathic arthritis patients and their parents: analysis of the JAMAR questionnaire. Pediatr Rheumatol Online J 2016; 14: 2.
 
27.
Sheffler LC, Hanley C, Bagley A, et al. Comparison of self-reports and parent proxy-reports of function and quality of life of children with below-the-elbow deficiency. J Bone Joint Surg Am 2009; 91: 2852-2859.
 
28.
Yi-Frazier JP, Hilliard ME, Fino NF, et al. Whose quality of life is it anyway? Discrepancies between youth and parent health-related quality of life ratings in type 1 and type 2 diabetes. Qual Life Res 2016; 25: 1113-1121.
 
29.
Eiser C, Varni JW. Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr 2013; 172: 1299-1304.
 
30.
Vetter TR, Bridgewater CL, McGwin G Jr. An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe? Health Quality of Life Outcomes 2012; 10: 85.
 
31.
Seid M, Opipari L, Huang B, et al. Disease control and health-related quality of life in juvenile idiopathic arthritis. Arthritis Rheum 2009; 61: 393-399.
 
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