Introduction
One of the fatal problems affecting children’s health are the renal diseases.1, 2 Nephrotic syndrome, being the most common renal diseases among children, damages glomeruli. 3, 4 It is also one of the most common reason for recurrent hospitalization of children. As nephrotic syndrome is a curable disease information regarding the same among parents and caregivers can not only reduce the hospitalization rate of children but also improve the overall health and prognosis among children suffering from nephrotic syndrome. Nephrotic syndrome, as we know it, is a combination of proteinuria, hypoalbuminemia, hyperlipidemia, and edem. 5
Nephrotic syndrome is characterised by nephrotic range proteinuria (proteinuria >3.5 g/24 hour or a urine protein:creatinine ratio > 2), edema, hypoalbuminemia (serum albumin <2.5 g/dL) and hypercholesterolemia (cholesterol >200mg/dL).6, 7
More than 80% cases of childhood nephrotic syndrome is Minimal Change Nephrotic Syndrome. Minimal change nephrotic syndrome is the most common cause of steroid sensitive nephrotic syndrome which has a satisfactory long term outcome.3 More than 95% of children with minimal change disease respond to corticosteroid therapy.7
Corticosteroids remain the mainstay for treatment of nephrotic syndrome. Those children responding to corticosteroid therapy are steroid-sensitive group that has a favourable and good long term prognosis whereas those dependent or resistant to corticosteroid therapy are steroid resistant group that has poor outcomes despite immunosuppression therapy.8 85-90% are steroid sensitive, approx 50% show frequent relapses or steroid dependence, and 3-10% are the late steroid resistance.9, 10, 11 Long term corticosteroid therapy itself has many deleterious effect on health of children. So, parents should have the knowledge about the strict adherence to the corticosteroid therapy.
In India, the incidence of minimal change nephrotic syndrome among children is high. An Indian journal of nephrology article shows that its prevalence varies within India. It is approximately 33% in Haryana and <12% in Vellore.12 It is known to affect 1-3 / 1 lakh children under 16 years of age.7
As minimal change nephrotic syndrome is the most common acute and curable renal disease. Educating the parents and the caregivers regarding the disease process, its symptoms, management, and care at home is of utmost importance for the treatment and better prognosis of the disease among children with nephrotic syndrome.
Materials and Methods
This cross-sectional study was carried out on admitted patients in Indira Gandhi Institute of Medical Science and hospital, Bihar. The caregivers of children with new onset nephrotic syndrome were identified and addressed about the study, its process and its purpose by the investigators. A total of 50 caregivers of admitted patients diagnosed with new onset nephrotic syndrome were included in the study. The investigator conducted the pretest after briefing about the procedure by providing a preformed structured questionnaire. An information booklet on nephrotic syndrome published in Hindi and English was given to the caregivers. 2 days duration was given to read the information booklet. After reading and clarification of the information booklet the investigator conducted post test. The validated preformed structured questionnaire published in Hindi and English, included demographic profile of the patient, function of kidney, meaning of nephrotic syndrome, signs and symptoms giving clue to the disease, urine tests done at home, medical management, supportive management, need of treatment adherence, prevention of complications due to disease and due to treatment and regular follow up.
Results and Discussion
The present study consists of 50 parents/caregivers of children of nephrotic syndrome admitted to our pediatric ward, IGIMS, Bihar over a period of 1 year. Among the 50 caregivers who were included in the study, 56% of them had male child. 52% of them were of 5-10 years age group. 56% of them had edema of duration < 1 week. Demoghaphic profile of the patient is shown in Table 1.
Table 1
Demographic profile of patients withnephrotic syndrome
|
Variables |
Number |
Percentage |
|
Age in years |
|
|
|
1-5 |
18 |
36 |
|
5-10 |
26 |
52 |
|
>10 |
6 |
12 |
|
Sex |
|
|
|
Male |
28 |
56 |
|
Female |
22 |
44 |
|
Religion |
|
|
|
Hindu |
41 |
82 |
|
Muslim |
9 |
18 |
|
Duration of edema in weeks |
|
|
|
<1 |
28 |
56 |
|
1-2 |
14 |
28 |
|
>2 |
8 |
16 |
Knowledge of caregivers of children with new onset nephrotic syndrome with respect to various aspects of nephrotic syndrome in pretest was 18% which increased to 80% in post test after reading the information booklet as shown in Table 2. Result of our study was found to be concordant with the study by Chhameshwari Verma. 13 Overall, the information booklet improved the better understanding of the caregivers regarding the disease process, its management and in improving the health care of children. There was no association of demographic variables with the gain in knowledge of the caregivers. As this study was conducted in small group of population, furthermore awareness programme are required for betterment of children with nephrotic syndrome.
Conclusion
As nephrotic syndrome is the most common pediatric renal disease associated with frequent hospitalization. Information about the care of children with nephrotic syndrome is of utmost important for remission of the disease and to prevent relapses and serious complications leading to fatality. During our study, it was observed that the caregivers were keen to know about the disease, edema, diet, urine testing, medication, warning signs and recurrence of the disease and the complications associated with it. Our study concluded that there was marked increase in awareness and knowledge of caregivers regarding nephrotic syndrome after reading the information booklet. Caregivers also shared their experience about the benefit of providing such type of information booklet on the disease and care for the same. This study highlighted the need of spread of awareness about care of children with nephrotic syndrome in IPD as well as OPD patients.
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