| Abstract|| |
Chronic kidney disease (CKD) is still a serious health problem in children with increasing morbidity and affecting children’s quality of life (QoL). The prevalence of children with CKD worldwide is approximately 82 cases/year/1 million children. From the Indonesian Basic Health Survey 2013, the prevalence of patients with CKD aged ≥15 years in Indonesia was 0.2%. To assess the QoL in children with CKD as well as its relationship with duration of diagnosis, severity, and related demographic factors, a cross-sectional analytic study was conducted. Individuals were recruited from July 2016 to May 2017 through consecutive sampling. CKD children aged 2–18 years who treated with conservative therapy and hemodialysis were included. Patients and their parents were asked to fill out the PedsQL™ generic score scale version 4.0 questionnaire. A total of 112 children were recruited, and QoL was assessed from parental reports (54.5%) and children’s reports (56.3%). The school and emotional aspects were the lowest score parameters studied. Factor related to QoL children with CKD were length of diagnosis >60 months (P = 0.004), female (P = 0.019), and middle school (P = 0.003). More than half of the children with CKD have disturbance of QoL in general from parental reports (54.5%) and children’s reports (56.3%). Length of diagnosis >60 months, female, and middle school education were all related to the QoL children with CKD.
|How to cite this article:|
Pardede SO, Rafli A, Gunardi H. Quality of Life in Chronic Kidney disease children using assessment Pediatric Quality Of Life Inventory™. Saudi J Kidney Dis Transpl 2019;30:812-8
|How to cite this URL:|
Pardede SO, Rafli A, Gunardi H. Quality of Life in Chronic Kidney disease children using assessment Pediatric Quality Of Life Inventory™. Saudi J Kidney Dis Transpl [serial online] 2019 [cited 2019 Sep 20];30:812-8. Available from: http://www.sjkdt.org/text.asp?2019/30/4/812/265456
| Introduction|| |
Chronic kidney disease (CKD) is still a serious health problem in pediatric patients, with increasing morbidity and mortality. Mortality rate in children with CKD is 30 times higher than healthy children. Despite not having exact data, it was estimated that the prevalence of CKD was 82 cases per one million children annually. CKD affects children’s growth and development, psychosocial health, and overall quality of life (QoL).,,
ItalKid Project study reported that the mean CKD incidence and prevalence was 12.1 and 74.7 cases per one million children annually. In Indonesia, the national data of CKD incidence or prevalence are not available. The Indonesian Basic Health Survey 2013 reported that CKD prevalence rate in the age group of >15 years was 0.2%. Several previous studies of Indonesian teaching hospitals in 1984–1988 reported that 2% of 2889 children admitted to the hospital as having kidney problems were actually CKD.
QoL is an individual and/or family reflection of the sick person during and/or after treatment. QoL is also considered as subjective individual reflection toward life and his/her surroundings. QoL measurement is multidimensional and not limited to physical or psychosocial aspects.,
The World Health Organization recommended a measurement of QoL based on physical, mental, and social aspects. There are several instruments available to measure QoL in children. One of the most common instruments used is Pediatric Quality of Life Inventory (PedsQL™), which can be used for children and teenagers. PedsQL™ version 4.0 is the most updated version. This instrument has two sections, which are generic and specific sections.,
QoL problems in children with CKD have not been reported until date in Indonesian literature.,,, Therefore, this study was intended to evaluate the QoL children with CKD in the association with demographic factors (age, sex, children and parents’ education, parental working status, and family income), duration of diagnosis, and disease severity. We used PedsQL™ 4.0 as QoL evaluation instrument because it has been widely used, can be used in broad range of age, and has good reliability. This study aimed to identify QoL in children with CKD to ensure optimal and suitable approach.
| Materials and Methods|| |
This was a cross-sectional analytical study to identify the QoL in children aged 2-18 years with CKD who treated with conservative therapy and hemodialysis and its association with demographic factors (age, sex, children and parents’ education, parental working status, and family income), duration of diagnosis, and disease severity. The study was conducted in Outpatient Care Unit of Nephrology Division, Hemodialysis Unit, and Inpatient Care Unit of Child Health Department, Dr. Cipto Mangunkusumo Hospital, Jakarta, from July 2016 to May 2017.
The study participants were all accessible population who fulfilled the inclusion criteria. Accessible population were all pediatric patients with CKD treated by Child Health Department of Cipto Mangunkusumo Hospital. Participants were recruited by a consecutive sampling method with sample size estimation by proportion of population calculation in a single sample. Inclusion criteria were children aged 2–18 years with diagnosis of CKD treated at Outpatient Care Unit of Nephrology Division, Hemodialysis Unit, and Inpatient Care Unit of Child Health Department, Dr. Cipto Mangunkusumo Hospital, Jakarta. Exclusion criteria were children with communication problems such as intellectual disability, autism, Down syndrome, or cerebral palsy and parents’ refusal.
The dependent variable in this study was QoL of children with CKD, which was evaluated by PedsQL™ with using authors’ agreement. The independent variables were CKD stage, duration of diagnosis, and demographic factors.
All data were recorded on study forms analyzed by computer program Statistical Package for Social Sciences version 22.0 (IBM Corp., Armonk, NY, USA). Univariate analysis was done to describe the variables. Bivariate analysis using Chi-square was done, and variables with P value less than 0.25 would be further analyzed in multivariate analysis with logistic regression test to determine the factor(s) related to QoL.
This study was approved by the Ethical Commission Faculty of Medicine University of Indonesia (365/UN2.F1/ETIK/2016).
| Results|| |
There were a total of 118 participants included in the study from July 2016 to May 2017. Participants with complete data and fulfilled all inclusion criteria were 112 participants. The majority of the participants were male (53.6%); 54% of the participants were aged 13–18 years, and 31.3% were aged 8–12 years. Based on education level, 42% of children had middle education, with 60.8% with middle school-educated father and 51.8% with middle school-educated mother. Most of the fathers (97.3%) were working and only 27.7% of the mothers were working. Half of the participants had low socioeconomic status and the other half had good socioeconomic status.
Report of PedsQL™ was divided into two types: one was parents’ report and the other children’s report. As much as 5.4% of participants did not fill the children’s report due to the age of <5 years. There was a difficulty in obtaining answers from children aged 5–7 years. This problem was solved using drawings and easy words. Disturbed QoL was reported both by parents (54.5%) and children (56.3%). Most children reported school function as the most commonly affected area, whereas parents mostly reported physical and school function as the most commonly affected area. In the age group of 2–4 years, the most common affected was emotional function; in 5–7 years, physical, emotional, and school functions mostly affected; in 8–12 years, school function; and in 13–18 years, physical and school functions.
A significant association was noted in duration of diagnosis more than 60 months as reported by parents (P <0.05), with a prevalence ratio of 1.571 [95% confidence interval (CI): 1.021–2.439]. Therefore, diagnosis duration was included in multivariate analysis [Table 1]. This association showed that diagnosis duration could be a risk factor for low QoL.
|Table 1: The association between demographic factors and quality of life in children with CKD based on parental report using PedsQL™.|
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There was a significant association between middle education level with children’s QoL based on children’s report, with a prevalence ratio of 3.962 (95% CI: 1.621–9.681).
Based on children’s and parental reports, the majority of children with CKD Stage 3 and above had low QoL in almost every area, which were physical, school, emotional, and social functions. Literature showed that almost all children with CKD had low score in QoL evaluation.
The low QoL in severe CKD could be related to the multiple complications commonly found in these stages. In this study, low QoL was highest in children aged 13–18 years based on children’s and parental reports.
Variables included in multivariate analysis were sex, children’s education, father education, diagnosis duration, and severity of disease [Table 2]. Based on multivariate analysis, the length of diagnosis more than 60 months affected QoL based on parental report (P = 0.004) and odds ratio 1.571 (95% CI: 1.021–2.439), whereas based on children’s report, female sex (P = 0.019, OR 3.114, 95% CI: 1.208–8.028) and children’s middle education (P = 0.003, OR: 4.227, 95% CI: 1.643–10.870) were related to QoL in children with CKD.
|Table 2: The association between demographic factors and quality of life in children with CKD based on children’s report using PedsQL™.|
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| Discussion|| |
In this study, we evaluated the QoL in children with CKD by PedsQL™. Low QoL was reported in 54.5% based on parental report and 56.3% in children’s report. This finding could be explained by the complexity of CKD treatment which includes holistic and comprehensive care as well as many complications following disease progression.
Adolescence was related to sexual and social identity, puberty, and peer solidarity, so chronic disease like CKD could be a stigma that affected social and cognitive function, independence, and self-esteem. Children in this age should have good self-esteem and autonomy. Hence, CKD patients with physical limitations due to the disease or the complications would affect self-autonomy, which led to disappointment and finally low QoL.
This study finding was similar to a study included in the National Institutes of Health-funded multicenter CKiD in 2010 which evaluated 402 CKD patients and found that the QoL was affected based on parental and children’s reports (30%). The difference in proportion between this study and the other study was caused by different study designs, methodology, and inclusion criteria. The greater proportion in our study might be due to different population and sample size. Therefore, it could be concluded that QoL was affected in 30%–56.3% of pediatric CKD patients. This proportion is an important value and should be considered in CKD treatment.
Parental reports showed a significant association between diagnosis durations more than 60 months with QoL (P <0.05). Children diagnosed with CKD for more than 60 months had a higher risk of having low QoL. Several studies had mentioned that diagnosis duration was a risk factor for low QoL.,,,
In children’s report, there was a significant association between children’s education level (middle) and QoL (P <0.05, risk prevalence: 3.962). In other studies, children’s report showed that school function had the lowest score. In the middle level of school, patients were in their adolescence period which was a vulnerable time.,, The other variables not significantly related to QoL were therapy, age, sex, diagnosis duration, and area of residence; this finding was similar to a study by Kilis-Pstrusinska. Till date, the difference between parental and children’s reports regarding QoL in pediatric patients with CKD is still unclear in in almost all available reports.,,,,,, In some studies, CKD patients rated their QoL lower than their parents and vice versa. Factors causing the difference are still unknown and considered multifactorial. Other studies regarding the QoL in pediatric chronic disease also reported this discrepancy between parental and children’s reports., This discrepancy might be caused by parental point of view for the future, whereas children were more oriented to the current situation.
In this study, the severity of CKD was divided into stages of CKD based on glome-rular filtration rate (G1–G2 and G3a–G5), as Grade 3 and higher was commonly related to several complications that potentially altered QoL., We found that 57.6% of parents and 62.1% of children with higher than G3 CKD had low QoL. Based on children’s and parental reports, severity of disease was not significantly related to QoL (P >0.05), which could be explained by the unspecificity of PedsQL™ for CKD; therefore, it did not show the true disease status. This finding was similar with the findings of studies in Poland and the United States, which showed that QoL children with CKD were lower than healthy children in any course of the disease.
Studies in the National Institutes of Health-funded multicenter CKiD also reported similar results, in which CKD severity indicated by glomerular filtration rate and CKD stage based on Kidney Diseases Outcomes Quality Initiative was not related to QoL. This could be caused by the cross-sectional method, which is hard to determine the temporal relationship between variables.
Variables with P <0.25 in bivariate analysis were included in the multivariate analysis. In children’s report, variables included were sex, children’s education level, father education level, diagnosis duration, and disease severity. In parental report, the variable included was duration of diagnosis. Children with CKD diagnosed for more than 60 months had a higher risk of developing low QoL as high as 1.571 times higher than CKD patients with diagnosis less than 60 months. This was similar with previous studies in which diagnosis duration was a risk factor for low QoL in CKD children.,,,
In children’s report, significant variables after multivariate analysis were female sex and education level (middle). The National Institutes of Health-funded multicenter CKiD study mentioned that sex was a predictor for QoL in CKD children. The majority of participants in studies done in 2009 and 2016 were female, but they did not mention any relation between female sex and QoL., The majority of our participants were male, consistent with the epidemiology of CKD (male:female ratio: 2:1). Male predominant participants were also found in other studies.,,,,,
The current instrument to evaluate QoL for children with CKD was PedsQL™ 3.0. Another instrument for CKD was Test of Quality of Life in Children with Kidney Disease, which has not been translated nor validated for Indonesia. Therefore, we used PedsQL™ 4.0, which had been widely used. This generic questionnaire had been translated and validated based on Mapi Trust Organization and had good reliability (Cronbach’s alpha: 0.80–0.88) and wide range of age (2–18 years).,, However, this instrument is not specific for CKD and could not reflect the actual status.
Difficulty in obtaining answers from participants aged 5–7 years was a limitation of this study. This study only described a temporary condition and not observing QoL for certain time frame. However, this study described QoL in pediatric patients with CKD and could be used for further research.
| Conclusion|| |
There was no significant association between disease severity and QoL. Duration after diagnosis for more than 60 months, female sex, and middle education level (senior high school) was related to QoL and was a risk factor for low QoL in children with CKD. From this study, it is needed to make governance guidelines and routine follow-up for children with CKD, especially concentrating on QoL to ensure their growth and development. It is also important to use specific questionnaire to assess QoL children with CKD.
| Acknowledgment|| |
This publication is based on thesis available at:http://perpustakaan.fk.ui.ac.id/opac/index.ph p?id=23149&p=show_detail.
Conflict of Interest: None declared.
| References|| |
Susan F, Massengill, Maria F. Chronic kidney disease in children and adolescents. Pediatr Rev 2014;35:16-30.
Pardede SO, Swanty C. Chronic kidney disease in children. Sari Pediatr 2009;3:199-204.
Ramayani OR, Rosmayanti R, Rafita R, Rusdidjas R. Outcome patients with terminal chronic kidney disease. Sari Pediatr 2013;5: 277-82.
Sinha R. Chronic kidney disease in paediatric population. Sci Verse Sci Direct 2013;2:107- 15.
Sekarwana N. Chronic kidney disease in children. Sari Pediatr 2004;6:64-84.
Ministry of Health Republic of Indonesia. Indonesian Health Survey (Riskesdas). 2013. p. 95-6.
Noer MS. Chronic Kidney Disease in Children. Surabaya: Faculty in Medicine University of Airlangga; 2003.
Eiser C. Children’s quality of life measures. Arch Dis Child 1997;77:350-4.
Sekartini R. Quality of life children with chronic disease. In: Trihono PP, Ari P, Dina M, Amanda S, editors. Continuing Medical Education LXVI. Jakarta: Indonesian Pediatric Association; 2014. p. 147-56.
Devinsky O, Westbrook L, Cramer J, et al. Risk factors for poor health-related quality of life in adolescents with epilepsy. Epilepsia 1999;40:1715-20.
Aparicio López C, Fernández Escribano A, Izquierdo García E, Luque de Pablos A, Garrido Cantanero E. Measurement of health-related quality of life in children with chronic kidney disease using a specific test. Influence of treatment. Nefrologia 2010;30:177-84.
Gerson AC, Wentz A, Abraham AG, et al. Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics 2010;125:e349-57.
Morrow AM, Hayen A, Quine S, Scheinberg A, Craig JC. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev 2012;38:186-95.
Kilis-Pstrusinska K, Medynska A, Chmielewska IB, et al. Perception of health-related quality of life in children with chronic kidney disease by the patients and their caregivers: Multicentre national study results. Qual Life Res 2013;22:2889-97.
McKenna AM, Keating LE, Vigneux A, et al. Quality of life in children with chronic kidney disease-patient and caregiver assessments. Nephrol Dial Transplant 2006;21:1899-905.
Garralda ME, Jameson RA, Reynolds JM, Postlethwaite RJ. Psychiatric adjustment in children with chronic renal failure. J Child Psychol Psychiatry 1988;29:79-90.
Soliday E, Kool E, Lande MB. Psychosocial adjustment in children with kidney disease. J Pediatr Psychol 2000;25:93-103.
Varni JW, Burwinkle TM, Seid M. The PedsQL as a pediatric patient-reported outcome: Reliability and validity of the PedsQL measurement model in 25,000 children. Expert Rev Pharmacoecon Outcomes Res 2005;5:705-19.
Tong A, Lowe A, Sainsbury P, Craig JC. Parental perspectives on caring for a child with chronic kidney disease: An in-depth interview study. Child Care Health Dev 2010;36:549-57.
Buyan N, Türkmen MA, Bilge I, et al. Quality of life in children with chronic kidney disease (with child and parent assessments). Pediatr Nephrol 2010;25:1487-96.
Dotis J, Pavlaki A, Printza N, et al. Quality of life in children with chronic kidney disease. Pediatr Nephrol 2016;31:2309-16.
Aparicio López C, Fernández Escribano A, Garrido Cantanero G, Luque de Pablos A, Izquierdo Garcia E. Design of a quality of life questionnaire in Spanish for children with chronic kidney disease. Nefrologia 2010;30:168-76.
KDIGO CKD Work Group. KDIGO 2012 clinical practice guideline for the evaluation and management of chronic kidney disease. Kidney Int Suppl 2013;3:1-150.
Wuhl E, Schaefer F. Can we slow the progression of chronic kidney disease? Curr Opin Pediatr 2012;22:170-5.
Sudung Oloan Pardede
MD, PhD Department of Child, Health Dr. Cipto Mangunkusumo Tertiary General Hospital- Faculty of Medicine Universitas Indonesia, Jakarta
[Table 1], [Table 2]