Comparison of Perceived Quality of Life Between Children with Lupus Nephritis and Their Parents
Abstract
Material and Methods: A cross-sectional study was conducted from February to March 2017 in children with lupus nephritis aged 5-18 years old treated at the Department of Child Health Dr. Soetomo Surabaya Hospital. Quality of life was assessed from parents and children using the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core questionnaires. Statistical analysis of Wilcoxon signed rank test and pair t-test were used with p-value<0.05 being significant.
Results: A total of 30 children were included during the study period. Sixteen children were female with a mean age of 11.5 (standard deviation 2.7) years. The differences in score between parents and children were as follows: physical functioning (82.8 vs 87.5) p-value=0.140, emotional functioning (65.0 vs 72.5) p-value=0.173, social functioning (80.0 vs 95.0) p-value=0.016 and school functioning (67.5 vs 70.0) p-value=0.116. There were no differences according to onset of diagnosis and the only differences found were in social functioning based on the induction treatment phase. Children with complications showed significant differences in physical, emotional and social functioning (p-value=0.041, p-value=0.023, p-value=0.038 respectively).
Conclusion: Parents and children with lupus nephritis showed different scores of quality of life in social functioning, and it is important to consider the daily life activities of children.
Keywords
Full Text:
PDFReferences
Zubair A, Frieri M. Lupus nephritis: review of the literature. Curr Allergy Asthma Rep 2013;13:580-6.
Perfumo F, Martini A. Lupus nephritis in children. Lupus 2005;14:83-8.
Hiraki LT, Feldman CH, Liu J, Alarcon GS, Fischer MA, Winkelmayer WC, et al. Prevalence, incidence, and demographics of systemic lupus erythematosus and lupus nephritis from 2000 to 2004 among children in the US Medicaid beneficiary population. Arthritis Rheum 2012;64:2669-76.
Kamphuis S, Silverman ED. Prevalence and burden of pediatric-onset systemic lupus erythematosus. Nat Rev Rheumatol 2010;6:538-46.
Hullmann SE, Ryan JL, Ramsey RR, Chaney JM, Mullins LL. Measures of general pediatric quality of life: Child Health
Questionnaire (CHQ), DISABKIDS Chronic Generic Measure (DCGM), KINDL-R, Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales, and Quality of My Life Questionnaire (QoML). Arthritis Care Res 2011;63(Suppl 11):S420-30.
Varni JW, Limbers CA, Burwinkle TM. Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL™ 4.0 Generic Core Scales. Health Qual Life Outcomes 2007;5:43.
Ruperto N, Buratti S, Duarte-Salazar C, Pistorio A, Reiff A, Bernstein B, et al. Health-related quality of life in juvenileonset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum 2004;51:458-64.
Levy DM, Peschken CA, Tucker LB, Chedeville G, Huber AM, Pope JE, et al. Health related quality of life in childhoodonset systemic lupus erythematosus is associated with ethnicity: results from a multiethnic multicenter canadian cohort. Arthritis Care Res 2014;66:1767-74.
Chaigne B, Chizzolini C, Perneger T, Trendelenburg M, Huynh-Do U, Dayer E, et al. Impact of disease activity on health-related quality of life in systemic lupus erythematosus – a crosssectional analysis of the swiss systemic lupus erythematosus cohort study (SSCS). BMC Immunology 2017;18:17-26.
Hiraki LT, Benseler SM, Tyrrell PN, Hebert D, Harvey E, Silverman ED. Clinical and laboratory characteristics and long-term outcome of pediatric systemic lupus erythematosus: a longitudinal study. J Pediatr 2008;152:550-6.
Abdalla E, Jeyaseelan L, Ullah I, Abdwani R. Growth pattern in children with systemic lupus erythematosus. Oman Med J 2017;32:284-90.
Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference?Pharmacoeconomics 2016;34: 645-9.
Moorthy LN, Peterson MG, Harrison MJ, Onel KB, Lehman TJ. Quality of life in children with systemic lupus erythematosus: a review. Lupus 2007;16:663-9.
Gannoni AF, Shute RH. Parental and child perspectives on adaptation to childhood chronic illness: a qualitative study. Clin Child Psychol Psychiatry 2010;15:39-53.
Louthrenoo O, Krairojananan J, Chartapisak W, Opastirakul S. Psychosocial functioning of children with systemic lupus erythematosus. J Paediatr Child Health 2012;48:1091–4.
Bai G, Herten MH, Landgraf JM, Korfage IJ, Raat H. Childhood chronic conditions and health-related quality of life: findings from a large population-based study. PloS One 2017;12:doi: 10.1371/journal.pone.0178539.
Pinquart M, Shen Y. Behavior problems in children and adolescents with chronic physical illness: a meta-analysis. J Pediatr Psychol 2011;36:1003-16.
Jolly M, Toloza S, GokerB, Clarke AE, Navarras SV, Wallaces D, et al. Disease-specific quality of life in patients with lupus nephritis. Lupus 2017;27:257-64.
Turkel S, Pao M. Late consequences of chronic pediatric illness. Psychiatr Clin North Am 2007;30:819-835.
Knight A, Kogon AJ, Matheson MB, Warady BA, Furth SL, Hooper SR. Cognitive function in children with lupus nephritis: a cross-sectional comparison with children with other glomerular chronic kidney diseases. J Pediatr 2017;189:181-8.
Pluchinotta FR, Schiavo B, Vittadello F, Martini G, Perilongo G, Zulian F. Distinctive clinical features of pediatric systemic lupus erythematosus in three different age classes. Lupus 2007;16:550-5.
Sato VA, Marques ID, Goldenstein PT, Carmo LP, Jorge LB, Titan SM, et al. Lupus nephritis is more severe in children and adolescents than in older adults. Lupus 2012;21:978-83.
Teo S, Lu PY, Liu ID, Yap HK. Management of Lupus nephritis in children. In: Yap HK, Liu ID, Ng KH, editors. Pedatric nephrology on the go. 3th ed. Singapore: Shaw-NKF-NUH Children’s Kidney Center; 2018;p.295-313.
Tse KC, Tang CS, Lio WI, Lam MF, Chan TM. Quality of life comparison between corticosteroid-and-mycofenolate mofetil and corticosteroid- and-oral cyclophosphamide in the treatment of severe lupus nephritis. Lupus 2006;15:371-9.
Tian SY, Silverman ED, Pullenayegum E, Brown PE, Beyene J, Feldman BM. Comparative effectiveness of mycophenolate mofetil for the treatment of juvenile-onset proliferative lupus nephritis. Arthritis Care Res 2017;69: 1887-94.
Hiraki LT, Lu B, Alexander SR, Shaykevich T, Alarcon GS, Solomon DH, et al. End-stage renal disease due to lupus nephritis among children in the US, 1995-2006. Arthritis Rheum 2011;63:1988-97.
Gerson AC, Wentz A, Abraham AG, Mendley SR, Hooper SR, Butler RW, et al. Health related quality of life of children with mild to moderate chronic kidney disease. Pediatrics 2010;125:e349-57.
Refbacks
- There are currently no refbacks.
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.