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Saudi Journal of Kidney Diseases and Transplantation
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RENAL DATA FROM ASIA–AFRICA  
Year : 2017  |  Volume : 28  |  Issue : 3  |  Page : 593-598
Assessment of quality of life in children with nephrotic syndrome at a teaching hospital in South India


1 Department of Pediatrics, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Pondicherry, India
2 Department of Preventive and Social Medicine, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Pondicherry, India

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Date of Web Publication18-May-2017
 

   Abstract 

This study was conducted to assess the quality of life (QOL) in children between 2 and 18 years of age with primary idiopathic nephrotic syndrome (NS) using Pediatric Quality of Life Inventory (PedsQL 4.0 Generic Core Scales). This cross-sectional comparative study was conducted at a tertiary care hospital in South India between December 2014 and February 2015. In this questionnaire-based study, 50 children with primary idiopathic NS and an equal number of age-matched controls with other chronic ailments were recruited. Their clinical and demographic details were recorded, and QOL was assessed using PedsQL 4.0 Generic Core Scales. The median (interquartile range) total QOL score in children with NS [65 (59–68.75)] was found to be higher compared to controls [62.19 (58.05–65.78)] (P = 0.012). Children with NS had significantly higher QOL scores in physical (P = 0.004), emotional (0.029), and social functioning (0.010) domains as compared to controls; however, the school performance was not different from controls. The QOL scores did not significantly differ between the various clinical pheno- types of NS. Demographic details such as age, gender, duration of illness, and steroid resistance did not significantly influence the total QOL scores among the nephrotic children. The present study shows that the overall QOL in children with NS was better than in children with other chronic illnesses. Further studies are needed to confirm these findings and explore the underlying cause of poor school performance.

How to cite this article:
Agrawal S, Krishnamurthy S, Naik BN. Assessment of quality of life in children with nephrotic syndrome at a teaching hospital in South India. Saudi J Kidney Dis Transpl 2017;28:593-8

How to cite this URL:
Agrawal S, Krishnamurthy S, Naik BN. Assessment of quality of life in children with nephrotic syndrome at a teaching hospital in South India. Saudi J Kidney Dis Transpl [serial online] 2017 [cited 2019 Nov 12];28:593-8. Available from: http://www.sjkdt.org/text.asp?2017/28/3/593/206452

   Introduction Top


Nephrotic syndrome (NS) in children is a common, yet challenging, relapsing, and remitting renal disorder and exhibits a heterogeneous clinical phenotype ranging from a single episode, infrequently relapsing, frequently relapsing to steroid-resistant disease.[1] Although 80% of these children are corticosteroid responsive, nearly half of them demonstrate a frequently relapsing or steroid-dependent course, often resulting in multiple complications, hos- pitalizations, or even chronic renal failure.[2] Not infrequently, NS spans a significant portion of a child’s formative years. Characteristics inherent to NS including edema, relapsing nature of the disease, and repeated exposure to steroids or other immunosuppressive drugs pose a challenge to quality of life (QOL) in these children.[3] Hence, a formal evaluation of the impact of the disease on physical, emotional, social, and school performance and health-related QOL (HRQOL) is imperative to provide comprehensive and holistic patient care. Considering the paucity of information on QOL in these patients,[2],[3] in general and Indian children in particular, we conducted the present study.

The aim of the study was to evaluate the HRQOL in children with NS and delineate the HRQOL domains in various clinical subtypes of NS. The primary objective was to assess the QOL in children between 2 and 18 years of age with primary idiopathic NS using Pediatric Quality of Life Inventory (PedsQL 4.0 Generic Core scales) in relation to controls. The secondary objective was to evaluate the physical, emotional, and social domains affected in various clinical phenotypes of pediatric NS.


   Patients and Methods Top


This cross-sectional comparative study was conducted at a tertiary care hospital in South India between December 2014 and February 2015 after obtaining approval from the Institute Ethics Committee (Approval No. JIP/IEC/ 2014/9/456). The cases included children with NS aged 2–18 years, attending the pediatric nephrology clinic and general pediatric outpatient department. The controls included age- matched children attending the general pedia- tric outpatient department and other pediatric subspecialty clinics. The controls were required to not have any clinical or biochemical features of NS or proteinuria.

Informed consent was obtained from the participant/guardian before the interview. All the participants/guardians were explained about the purpose of the study, and confidentiality of data collected was ensured. Data were collected by the first author with the help of a structured questionnaire using PedsQL 4.0 Generic Core Scale under the supervision of the second author. The instrument was translated by professional translators from English to the regional language (Tamil) and retranslated to English to compare with the original version. It took approximately 30 min to gather the required information from the participant/ guardian. The tool was piloted on 10 parents before initiation of the study.

The tool evaluates the QOL in five domains: physical functioning (eight items), psycho- social functioning including emotional functioning (five items), social functioning (five items), and school functioning (5 items). The PedsQL scores range from 0 to 100 points. Recall time was one month and a 5-point response scale was used from 0 (never a problem) to 4 (almost always a problem). The scores of each item were then reversed and linearly transformed into a 0–100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, and 4 = 0), with higher PedsQL scores indicating a better QOL. Baseline demographic details including age, gender, and per capita income were collected.[4]

NS was defined as per the International Study for Kidney Diseases in Children criteria and included heavy proteinuria, hypoalbuminemia (serum albumin <2.5 g/dL), hyperlipidemia (serum cholesterol >200 mg/dL), and edema.[5] Nephrotic range proteinuria was defined as early morning urine protein 3+/4+ (on dipstick) and spot protein:creatinine ratio >2 mg/mg. NS was classified, investigated, and managed as per the Indian Pediatric Nephrology Group.[6] Parameters studied were QOL total score, QOL in social, emotional, physical, and school domains, and demographic variables such as the clinical phenotype of NS, age, gender, serum albumin, cholesterol, and immunosup- pressants received.

Sample size and statistical analysis

A convenient sample size of 100 patients was chosen based on the duration of the study. A total of 50 cases and an equal number of controls were recruited. Continuous variables with normal distribution were expressed as mean values and standard deviation and compared using Student’s t-test, whereas those not normally distributed were expressed as median and range and analyzed using Mann-Whitney U-test. Categorical variables were compared using Chi-square test or Fisher’s exact test. One-way analysis of variance or Kruskal- Wallis tests were used to analyze statistical differences between three or more groups for parametric and nonparametric data, respectively. P <0.05 was considered statistically significant. Data were evaluated using Statistical Package for the Social Science (SPSS) software version 16.0 (SPSS Inc., Chicago, IL, USA). Predictive risk factors for poor total and school performance scores were determined by univariate analysis using Student’s t-test.


   Results Top


A total of fifty cases and an equal number of controls aged 2.2–15 year and 2–18 years, respectively, were included in the study. [Table 1] illustrates the demographic details of the cases. Among children with NS, 68% had difficult clinical phenotypes (frequently relapsing, steroid-dependent, and steroid-resistant varieties). The median duration of the disease was 33 months.
Table 1: Characteristics of cases with the nephrotic syndrome (n = 50).

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The disease profile among the control children included chronic diseases such as epilepsy (15 cases), asthma (6 cases), hemophilia (3 cases), thalassemia major (2 cases), hyper- thyroidism (4 cases), hypothyroidism (7 cases), congenital heart disease (3 cases), rheumatic heart disease (4 cases), attention deficit hyper- activity disorder (2 cases), autoimmune hemo- lytic anemia (2 cases), congenital dyserythro- poietic anemia (1 case), and hypereosinophilic syndrome (1 case). Comparison of baseline characteristics of cases and controls revealed no statistical difference [Table 2].
Table 2: Comparison of baseline characteristics of cases and controls.

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The median PedsQL 4.0 Generic Core Scale scores were found to be higher in cases compared to controls. There were significantly better scores in physical (P = 0.004), emotional (P = 0.029), and social functioning (P = 0.010) among the former. However, the school performance scores in cases versus controls were not significantly different from each other [Table 3]. Comparison of QOL in different clinical phenotypes of NS did not show statistically significant differences [Table 4].
Table 3: PedsQL 4.0 Generic Core Scale Quality of Life scores in cases and controls.

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Table 4: Comparison of PedsQL 4.0 Generic Core Scale quality of life in different clinical phenotypes of nephrotic syndrome.

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Univariate analysis for poor total QOL scores was performed. Poor scores were defined as scores below the 25th percentile of the median total QOL score of cases. Demographic details such as age [OR: 0.49 (95% CI: 0.11–2.26)], gender [OR: 0.375 (95% CI: 0.068–2.08)], duration of illness [OR: 0.857 (95% CI: 0.1824.042)], steroid resistance [OR: 3.273 (95% CI: 0.356–30.097)], complications related to therapy [OR: 1.8 (95% CI: 0.184–17.567)], and per capita income and history of peritonitis [OR: 1.385 (95% CI: 0.136–14.071)] did not significantly influence the total QOL scores among the nephrotic children (P >0.05). Similarly, univariate analysis for predictors of poor school performance QOL scores did not reveal the aforementioned variables to be significant.


   Discussion Top


In children with chronic illnesses including NS, the focus of research and clinical evaluation is often the impact of disease activity. However, it is increasingly recognized that the burden on HRQOL is not limited to disease activity and treatment but also related to the cumulative psychosocial impact of the disease as well as medication exposure.[3],[7] A better understanding of HRQOL in such children would help to improvise clinical care. The PedsQL 4.0 Generic Core Scale is a brief, standardized generic assessment instrument that assesses patients’ and parents’ perceptions of HRQOL in pediatric patients in a systematic manner with chronic health problems. The flexibility, reliability, and validity of PedsQL core and modular design make it a popular tool in a variety of research and clinical applications for pediatric chronic health conditions. PedsQL 4.0 Generic Core Scale is a well- used legacy instrument that assesses the physical, emotional, social, and school perfor- mance.[8],[9] There are few published studies regarding QOL in patients with NS.[3],[10] These pertain to adults or have enrolled patients from Western nations.[3] Therefore, their results cannot be generalized.

The present study demonstrates a better QOL in children with NS when compared with other chronic childhood illnesses. The study provides insights into the often neglected aspects of care (physical, social, emotional, and school health) in pediatric NS in the context of a developing country. Interestingly, we found that the performance on physical, emotional, and social functioning was better than children with other chronic ailments which could possibly be related, at least in part, to free availability of alternate immunosuppressants such as cyclosporine, cyclophosphamide, and myco- phenolate mofetil at our institute which led to a good follow-up. However, an important observation was that the school performance scores in cases were not different from controls in contrast to the other domains. An analysis of the PedsQL Inventory questionnaire results revealed that all school-going children with NS enrolled in the study, “missed schools to go to the doctor or hospital” or “missed school because of not feeling well.” Even though many of them “did not experience difficulties in class” and “did not have trouble keeping up with school work,” the authors believe that the reasons for poor school performance scores could be partly attributable to the frequent checkups for evaluation of the disease activity and assessment of adverse effects related to medications.

The relapsing nature of illness in childhood NS may lead to irregular school attendance and children may find it difficult to cope with the burden of missed lessons and interrupted peer interactions. In addition, a punitive school environment compounded by teachers’ insufficient knowledge about the illness and inability to spend adequate time with these children may present barriers to their integration into the classroom situation.[11]

There is limited information available regarding the assessment of HRQOL in children with NS, especially from developing countries. Rŭth et al evaluated QOL and psychosocial adjustment by standardized questionnaire in 45 children with steroid-sensitive NS from the Netherlands. Only the QOL subscale “social function” was impaired.[3] Similarly, an evaluation of QOL using PedsQL Inventory in 127 American children with prevalent NS as compared to incident NS showed poor scores in social and school functioning.[2] In contrast, most studies from India have described the behavioral profile of children with NS, but information regarding QOL in these children is meager. The emotional and social domains of HRQOL in children with chronic illnesses have been considered to be largely related to ethnic, cultural, societal practices, and socioeconomic status,[12] which makes the situation different from children in the Western world and could explain the differences in results of our study in comparison to Western countries.

This is the first study evaluating HRQOL in a cohort of pediatric NS in South India using a validated and flexible measurement model, namely PedsQL 4.0 Generic Core Scale and is particularly consistent with the paltriness of information in QOL in this patient population. The recruitment of controls with chronic ailments involving other systems provides a reasonable comparative assessment of QOL that has been performed in earlier studies as well.[12]

The present study has some limitations. Although factors such as age, gender, duration of illness, clinical type of NS, per capita income, and the immunosuppressive drugs provided for the patients were evaluated for their possible contribution to poor QOL scores, the study could not demonstrate any statistically significant influence. This could be due to a relatively small sample size which was in consonance with the short duration of study. The study is also limited by its cross-sectional nature as a result of which a long-term follow- up of this cohort was not undertaken.

To conclude, the present study shows that the overall QOL in children with NS was better when compared with other chronic pediatric illnesses. Clinical phenotypes of NS and demographic parameters did not affect the QOL. Although further studies are needed to confirm the findings of this study and explore the underlying cause of school absences, it is suggested that school level interventions, especially in schools with a larger number of low-income students should be explored as a strategy to reduce school absenteeism due to NS. Improving attendance in these children requires a multifaceted approach directed toward psychosocial interventions.

Conflict of interest: None declared.

 
   References Top

1.
Gipson DS, Massengill SF, Yao L, et al. Management of childhood onset nephrotic syndrome. Pediatrics 2009;124:747-57.  Back to cited text no. 1
[PUBMED]    
2.
Selewski DT, Troost JP, Massengill SF, et al. The impact of disease duration on quality of life in children with nephrotic syndrome: A Midwest Pediatric Nephrology Consortium study. Pediatr Nephrol 2015;30:1467-76.  Back to cited text no. 2
[PUBMED]    
3.
Ruth EM, Landolt MA, Neuhaus TJ, Kemper MJ. Health-related quality of life and psycho- social adjustment in steroid-sensitive nephrotic syndrome. J Pediatr 2004;145:778-83.  Back to cited text no. 3
    
4.
Patro BK, Jeyashree K, Gupta PK. Kuppuswamy’s socioeconomic status scale 2010-the need for periodic revision. Indian J Pediatr 2012;79:395-6.  Back to cited text no. 4
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5.
The primary nephrotic syndrome in children. Identification of patients with minimal change nephrotic syndrome from initial response to prednisone. A report of the International Study of Kidney Disease in Children. J Pediatr 1981;98:561-4.  Back to cited text no. 5
    
6.
Bagga A, Ali U, Banerjee S, et al. Management of steroid sensitive nephrotic syndrome: Revised guidelines. Indian Pediatr 2008;45: 203-14.  Back to cited text no. 6
    
7.
Gipson DS, Selewski DT, Massengill SF, et al. Gaining the PROMIS perspective from children with nephrotic syndrome: A Midwest pediatric nephrology consortium study. Health Qual Life Outcomes 2013;11:30.  Back to cited text no. 7
    
8.
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;39:800-12.  Back to cited text no. 8
    
9.
Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul Pediatr 2003;3:329-41.  Back to cited text no. 9
    
10.
Shutto Y, Yamabe H, Shimada M, Fujita T, Nakamura N. Quality of life in patients with minimal change nephrotic syndrome. Scientific World Journal 2013;2013:124315.  Back to cited text no. 10
    
11.
Guha P, De A, Ghosal M. Behavior profile of children with nephrotic syndrome. Indian J Psychiatry 2009;51:122-6.  Back to cited text no. 11
[PUBMED]  [Full text]  
12.
Gupta M, Nanda S, Kaushik JS. Quality of life in symptomatic HIV infected children. Indian Pediatr 2013;50:1145-7.  Back to cited text no. 12
    

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Correspondence Address:
Sriram Krishnamurthy
Department of Pediatrics, Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Pondicherry 605 006
India
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DOI: 10.4103/1319-2442.206452

PMID: 28540898

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