PNJB_8_21

Original Article
1 1
2 2
3 Non-compliance in Pediatric Nephrotic Syndrome 3
4 4
5 5
Abstract
6 Ranjit Ranjan Roy, 6
Background: Non-compliance to medications and health advice significantly impact care of patients
7 Md. Murad 7
as well as impose financial burden in nephrotic syndrome (NS) patients. Aim: The aim of this article is
8 8
to determine the cause and consequence of non-compliance in NS patients. Materials and Methods: Chowdhury,
9 This prospective study was conducted between March 2020 and February 2021 in the department of 9
Amit Kumar Datta,
10 Pediatric Nephrology of Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka, Bangladesh. 10
11 Modasseer M. 11
Seventy-seven NS patients were recruited randomly. In-person interviews were conducted with attendents
12 of patients, along with patients if possible. Clinical and laboratory data were collected from medical Hossain, Tahmina 12
13 records. Residence, financial constraints, educational status, health advices (daily bed side urine test), Jesmin, Abdullah Al 13
14 relapses of disease, different types of immunosuppressive medications, etc. were provided for the cause Mamun, 14
15 of non-compliance. Consequences of non-compliance were observed through the experience of relapses, Mst. Shanjida 15
16 asthma attack or infection, and drug toxicity. Data were analyzed using SPSS software version 20. Results: Sharmim 16
17 A total of 77 patients were analyzed and among them 74.02% were non-compliant and 25.98% were 17
Department of Pediatric
compliant. Among the non-compliant patients, non-compliance to asthma medication, prednisolone,
18 Nephrology, Bangabandhu 18
second-line immunosuppressive drugs, and third-line immunosuppressive drugs were 43.87%, 31.57%, Sheikh Mujib Medical University
19 14.03%, and 10.53%, respectively. About 56.14% of the patients did not do bed side urine for albumin
19
(BSMMU), Dhaka, Bangladesh
20 (BSUA). Remote location (63.15%), financial constraints (36.84%), low parental education (35.09%), 20
21 ignorance (17.54%), and undetermined cause (17.50%) were observed as main contributing factors 21
22 for non-compliance. Among study populations, 77.19% experienced more relapses in comparison to 22
23 compliance (10%). Non-compliant patients experienced more asthma attack (70.17%, 40/57), pneumonia 23
24 (63.2%), and steroid toxicity (36.8%) in comparison to the compliance group (45%, 36.8%, and 10%, 24
25 respectively). About 31.57% of the non-compliant group had spent 30,000–70,000 taka in comparison to 25
26 5% in the compliance group and it was statistically significant (P = 0.031). Conclusion: Poor compliance 26
27 to medications and health-related advices have diverse effects including frequent relapse, drug toxicity, 27
28 higher rates of complications and hence increased healthcare cost. Remote location, ignorance, and 28
idiopathic causes were major contributing factors behind non-compliance issue. Appropriate counseling
29 29
might change this prevailing non-compliance scenario in future.
30 30
31 Keywords: Compliance, nephrotic syndrome, non-compliance 31
32 32
33 33
Introduction (BA), rheumatoid arthritis (RA), chronic
34 34
kidney disease (CKD), hypertension (HTN),
35 Compliance has been defined as the extent Received: 11 Sept 2021 35
glomerulonephritis (GN), cystic fibrosis,
36 to which a person’s behavior coincides with Accepted: 23 Sept 2021 36
etc. are required to follow multifaceted and Published: XX XX XXXX
37 medical or health advice, whereas a patient is 37
comprehensive management regimens such as
38 addressed as non-compliant when he or she 38
daily medications for timely as well as dietary
39 does not take a prescribed medication or follow Address for correspondence: 39
or activity demands or restrictions.[3]
40 a prescribed course of treatment or deliberately Prof. Ranjit Ranjan Roy, 40
41 Non-compliance to comprehensive Department of Pediatric 41
fail or refuse to comply. In comparison to non-
Nephrology, Bangabandhu
42 compliance, “non-adherence” is the behavior management of chronic diseases such as 42
Sheikh Mujib Medical University
43 in which a patient unintentionally fails to medication schedules, dialysis, and nutritional (BSMMU), Dhaka, Bangladesh.
43
44 follow a plan.[1,2] regimens remains a significant barrier for the E-mail: ranjit.bsmmu@gmail. 44
45 effective management of the population.[3] com 45
This compliant and non-compliant terms are
46 46
more popular in the management of diseases, Evidence indicates that a greater proportion of
47 Access this article online 47
especially chronic diseases. Childhood chronic patients, especially CKD, were non-
48 Website: 48
chronic conditions such as bronchial asthma compliant to prescribed dialysis, medication,
49 www.pnjb-online.org
49
and dietary and fluid recommendations,
50 DOI: 10.4103/pnjb.pnjb_8_21 50
causing ongoing challenges in the health
51 This is an open access journal, and articles are distributed under
Quick Response Code: 51
the terms of the Creative Commons Attribution-NonCommercial- care. [4] It has been observed in diabetes
52 52
ShareAlike 4.0 License, which allows others to remix, tweak, and
53 build upon the work non-commercially, as long as appropriate 53
How to cite this article: Roy RR, Chowdhury MM,
54 credit is given and the new creations are licensed under the
Datta AK, Hossain MM, Jesmin T, Mamun AA, et al.
54
identical terms.
55 Non-compliance in pediatric nephrotic syndrome. 55
56 For reprints contact: reprints@medknow.com
Paediatr Nephrol J Bang 2021;XX:XX-XX. 56

© 2021 Paediatric Nephrology Journal of Bangladesh | Published by Wolters Kluwer - Medknow 1

 Roy, et al.: Non-compliance in pediatric NS

1 mellitus (DM) patients that increased adherence level had countries, strategies leading to successful health care in 1
2 meaningful declines in their rates of hospitalization and chronic ill patients are largely understudied and provide a 2
3 emergency department visits.[5] Similarly in BA patients, it is series of barriers such as economic burden, educational status, 3
4 observed that non-compliance to medications is directly related gender issue, and access to healthcare services to achieve 4
5 to increased mortality and frequent hospital admission with optimal health care. As pediatric patients go from childhood 5
6 acute exacerbation and is termed as “cost problem” because to adolescence, adherence may waver as patients find ways to 6
7 of the increased rates of hospitalization that are needed to manage their chronic illness.[17] 7
8 maintain lung function.[3,6] Poor compliance to antihypertensive 8
It is essential to examine the influence on disease outcome
9 drugs leads to permanent and debilitating target organ damage 9
in childhood NS. But non-adherence may cause treatment
10 including CKD, blindness, acute stroke syndrome, and acute 10
failure in pediatric chronic conditions.[18] Unfortunately, there
11 coronary syndrome.[7] 11
are few or no published data available about the aftermath of
12 12
Treatment regimens may cause disruptions of normal life non-compliance to medication and health services in children
13 13
cycle such as frequent hospitalizations or treatment sessions; with NS. With this view, this study has been aimed to identify
14 14
scheduled follow-up causes absences from school. Even the cause and consequence of non-compliance in NS patients.
15 15
parents also face so many obstacles such as stressful life,
16 Materials and Methods 16
financial load, or quit from job to deal with treatment demands
17 17
as families are responsible to follow treatment protocols.[3] Patients and procedures
18 18
19 Nephrotic syndrome (NS) is one of the most common CKDs NS patients aged ≥1 to <18 years were recruited randomly for 19
20 in children, with a prevalence of approximately 16 cases per this study focusing on the causes of non-compliance and its 20
21 100,000.[8] The chronicity of NS is characterized with its consequences after taking informed written consent. 21
22 relapse-remitting courses, which tends to resolve spontaneously 22
23 following puberty.[9] The main stay of treatment of NS is Research subjects were NS cases who attended the inpatient ward 23
24 steroids and 80–90% of the patients will experience relapse and outpatient care of nephrology department of BSMMU from 24
25 of the disease. For half, the disease relapses frequently or March 2020 to February2021 in the Department of Pediatric 25
26 patients become dependent on steroids to maintain remission. Nephrology of BSMMU, Dhaka, Bangladesh. The subjects met 26
27 Approximately 7.4–19.6% is steroid-resistant (SRNS) with its the inclusion criteria: steroid-sensitive (initial attack and relapse) 27
28 poor renal outcome.[8-10] and -resistant NS following the treatment protocol recommended 28
29 by the pediatric nephrologist, and age at onset: ≤1.0 NS due to 29
In 30–60% of the cases, NS is associated with BA and its specific kidney disease (such as Henoch-Schönlein purpura,
30 30
relapse is frequently associated with poor control of BA, acute glomerulonephritis, lupus erythematosus, or associated
31 31
urinary tract infection (UTI), viral upper respiratory tract with hepatitis B or C), participation in another trial, children
32 32
infection, pharyngitis, pneumonia, septicemia, peritonitis, with congenital forms of NS, and patients who did not wish to
33 33
and diarrhea.[11] Continuing the long-term specialized therapy participate in the study were excluded from the study.
34 34
with intense outpatient follow-up and family participation for
35 A structured questionnaire contained individual data of each 35
disease monitoring and treatment are fundamental goals for
36 patient such as age, date of birth, gender, initial date of 36
the successful management of NS in pediatric patients.[12] It is
37 diagnosis, clinical characteristic, management, complication, 37
evident that good compliance has a positive effect on clinical
38 medication check list, and home care for patients [daily 38
outcomes in DM, hypertension, and dyslipidemia.[13]
39 monitoring of bed side urine test for albumin (BSUAlb), 39
40 The success of healthcare services is mostly dependent on the symptom, and immunosuppressive drugs taken]. 40
41 motivation and willingness of patients to follow the prescribed 41
42 regimens. Treatment adherence contributes to clinical outcomes Clinical and labrotary data were collected from medical records 42
43 and is more complex among chronically ill children. [14] If which were obtained by a well-designed questionnaire. Variables 43
44 children and parents do not follow instructions adequately, of interest included sex, age, residence, financial constraints, 44
45 health care is compromised even after giving the effective educational status, health advices (daily bed side urine test), 45
46 treatments. Nurten et al.[15] had shown that non-compliance relapses of disease, different types of immunosuppressive 46
47 to dietary and fluid restrictions, hemodialysis (HD), and medications, etc. were provided for identifying the cause 47
48 medication treatment has increased the risks of hospitalization of non-compliance. Consequences of non-compliance were 48
49 and mortality significantly. It has been observed among adult observed through the experience of relapses, asthma attack 49
50 CKD patients that non-adherence rates to dialysis range from or infection, and drug toxicity. 50
51 2% to 98%.[4] Similarly in pediatric kidney transplant patients, Diagnosis of NS was based on generalized edema, massive 51
52 the prevalence of non-adherence in developed countries can proteinuria (>40 mg/m 2/h), hypoalbuminemia (<2.5 g/ 52
53 be as low as 30% and as high as 70%.[16] dL), and hyperlipidemia. Frequent relapse NS (FRNS) 53
54 was def ined as four or more relapses in the previous 54
In developed countries, factors related to positive clinical
55 12 months. Steroid-dependent NS (SDNS) was defined 55
outcomes are well described. Unfortunately in developing
56 56

2 Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021

 Roy, et al.: Non-compliance in pediatric NS

1 as two consecutive relapses while on every alternate day Data management and statistical analysis 1
2 steroid or within 14 days of stopping of oral steroid, whereas 2
The collected data were checked, tabulated, and then inserted
3 infrequent relapse NS (IFRNS) was defined as less than two 3
into a computer. Nominal data such as patients’ gender, patients’
4 relapses within the first 6 months of presentation or less 4
diagnosis, parental education of both father and mother, and
5 than four relapses within 12 months’ period. Remission 5
socioeconomic status were described as percentages and χ2 test.
6 was defined when bed side urine albumin was nil for 3 6
Numerical data such as current patients’ age and compliance
7 consecutive days in early morning specimens. Relapse 7
were expressed as mean ± SD and percentage as needed.
8 was defined as urine albumin 3+ or 4+ (or Up:Uc>2.0 mg/ 8
The χ2 test (for categorical data) and Fisher’s exact test were
9 mg) for 3 consecutive days in early morning specimens 9
done to compare financial status, educational status, and drug
10 in patients who were on remission. Children with NS 10
toxicity in compliant and non-compliant groups and P-value
11 have complete lack of remission, despite therapy with 11
was considered to be significant if the difference was P < 0.05.
12 prednisone at 60 mg/m2/day for 4 weeks with three pulses 12
Data were analyzed using SPSS software version 20.
13 of methylprednisolone at a dose of 1000 mg/1.73 m2 on 13
14 every alternate day.[19] Steroid toxicity manifested as growth Patients and their attendants who met the criteria had been 14
15 retardation, osteoporosis, infections, diabetes, cataract, asked for parental/guardian written informed consent. This 15
16 hypertension, hirsutism, and Cushingoid appearances.[19] research had been granted approval by the Institutional Review 16
17 Educational status was classified as literate and illiterate Board (IRB) of BSMMU. 17
18 on the basis of giving signature by themselves. 18
Flow chart of the study
19 19
20 20
21 21
22 22
23 23
24 24
25 25
26 26
27 27
28 28
29 29
30 30
31 31
32 32
33 33
34 34
35 35
36 36
37 37
38 38
39 39
40 40
41 41
42 42
43 43
44 44
45 45
46 46
47 47
48 48
49 49
50 50
51 51
52 52
53 53
54 54
55 55
56 56

Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021 3

 Roy, et al.: Non-compliance in pediatric NS

1 Results Table 1: Demographic and clinical characteristics of 1

2 study population (n = 77) 2
In this retrospective tudy, Table 1 illustrated demographic
3 Variables N = 77 3
and clinical characteristics of the study population (n = 77),
4 Age (years) 4
in which mean age was 8.3 ± 4.2 and 59.74% were male
5 Mean± SD 8.3 ± 4.2 5
children. About 31.17% mothers and 22.07% fathers were
6 Sex 6
7 illiterate: 88.31% were working parents and 54.54% children 7
Male 46 (59.74%)*
8 were residing in the rural area. In the present study, out of Female 31 (40.47%) 8
9 77 patients, 40.20%, 28.60%, 27.30%, and 3.90% of the Residence 9
10 patients were IFNS, FRNS, SDNS, and SRNS, respectively, Rural 42 (54.54%) 10
11 whereas 63.60% of the children were in association Urban 35 (45.45%) 11
12 with BA and 29.87% of the patients had experienced Educational status 12
13 steroid toxicity. Mother 13
14   Illiterate 24/77 (31.17%) 14
In Table 2, comparison between non-compliant and compliant
  Literate 53 (68.83%)
15 children was observed among different variables such as 15
   i. Primary school (classes 1–5) 22/53 (41.50%)
16 residence, educational status of father and mother, monthly 16
ii. Secondary school (classes 17/53 (32.07%)
17 income, hospital expense of BA in association with NS and 6–10)
17
18 its different types of relapse and steroid toxicity. P-values were iii. Higher school 12/53 (22.64 %) 18
19 significant (P = 0.05) among residence, educational status of iii. Above (graduate, university) 02/53 (3.77%) 19
20 father and mother, low monthly income (10,000 taka), presence Father 20
21 of BA in NS patients, increased number of relapse more than   Illiterate 17/77 (22.07%) 21
22 four times, and steroid toxicity and these were 0.010, 0.004,   Literate 60/77 (77.92%) 22
23 0.004, 0.008, 0.034, and 0.001, respectively. About 35% of    i. Primary school (classes 1–5) 22/60 (36.66%) 23
24 compliant patients’ monthly family income was between ii. Secondary school (classes 14/60 (23.33%) 24
25 30,000 and <40,000 taka; 31.57% of the non-compliant 6–10) 25
26 group had spent 30,000–70,000 taka in comparison to 5%
iii. Higher school 18/60 (30%) 26
27 iii. Above (graduate, university) 6/60 (10%) 27
in the compliance group and it was statistically significant Employment status
28 (P=0.031). Steroid toxicity is more prevalent among non- 28
29 Working 68 (88.31%) 29
compliant patients (36.8%) than compliant counterpart, which Not working 09 (11.69%)
30 is statistically significant (P=0.04). 30
Type of NS
31 31
Infrequent relapse of NS 40.20%
32 In Figure 1, it was observed that out of 77 patients, 74.02% 32
Frequent relapse of NS 28.60%
33 of the patients belonged to the non-compliant group either to
Steroid-dependent NS 27.30%
33
34 medication and or to health-related advice and 25.98% were
Steroid-resistant NS 3.90% 34
35 compliant. Bronchial asthma with NS 49/77 (63.60%) 35
36 Drug toxicity (steroid) 23/77 (29.87%) 36
In Table 3, nine patients (15.79%) did not come for routine
37 Patients’ characteristics 37
follow-up as per advise; rather, they took self-medication
38 Compliance 20 (25.98%) 38
during relapses and 32 patients (56.14%) did not follow advise
39 Non-compliance 57 (74.02%) 39
to perform bed side urine albumin test in the morning, which
40 40
helps in the early detection of NS relapse. Data expressed in %
41 41
42 Figure 2 shows that non-compliance to asthma medication, respectively. P-value was significant in pneumonia among 42
43 prednisolone, second-line immunosuppressive drugs compliant and non-compliant patients (P = 0.044), but in 43
44 (levamisole, cyclophosphamide, mycophenolatemofetil, UTI, peritonitis, meningitis, and cellulitis, P-values were 44
45 and azathioprine) and third-line immunosuppressive drugs insignificant (P-value of UTI 1.000; peritonitis 0.669; 45
46 (cyclosporin and tacrolimus) was 43.87%, 31.57%, 14.03%, meningitis 1.000; cellulitis 0.669). 46
47 and 10.53%, respectively. 47
48 Parental educational background, location of health services, 48
Non-compliant patients had higher rates of infectious
49 financial condition, ignorance, and undetermined causes played 49
complications. In Figure 3, the infection rate between non-
50 a crucial role regarding compliance to medications and or 50
compliant and compliant patients was observed. Among
51 health-related advice as found in this study. 51
52 the non-compliance patients (n = 57), pneumonia, UTI, 52
peritonitis, meningitis, and cellulitis were 63.2%, 7.0%, In Figure 4, causes of non-compliance were analyzed and
53 53
54 10.0%, 3.0%, and 10%, respectively. In compliant patients, remote location (63.15%), financial constraints (36.84%), 54
55 these variables were 36.8%, 3.0%, 5.0%, 0.0%, and 5.0%, low parental education (35.09%), ignorance (17.54%), 55
56 56

4 Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021

 Roy, et al.: Non-compliance in pediatric NS

1 Table 2: Comparison of difference between non-compliant and compliant patients 1

2 Variables Non-compliance, n=57 (%) Compliance, n = 20 (%) P-value 2
3 Residence 3
4 Urban 21 (36.8) 14 (70) 0.010* 4
5 Rural 36 (63.2) 06 (30) 0.030 5
6 Educational status 6
7 Mother 7
8   Illiterate 23 (40.35) 1 (5) 0.004* 8
9 Father 9
10   Illiterate 17 (29.84) 0 0.004* 10
11 Monthly income (taka) 11
12 <10,000 21 (36.84) 1 (5) 0.008 12
13 10,000 to <20,000 16 (28.07) 3 (15) 0.368 13
20,000 to <30,000 11 (19.30) 5 (25) 0.749
14 14
30,000 to <40,000 8 (14.04) 7 (35) 0.054
15 15
≥40,000 1 (1.75) 4 (20) 0.015
16 16
Hospital cost (taka)
17 <30,000 35 (61.4) 19 (95.0) 0.009 17
18 30,000–70,000 18 (31.6) 1 (5.0) 0.031 18
19 70,000–100,000 2 (3.5) 0 1.000 19
20 >100,000 2 (3.5) 0 1.000 20
21 Asthma-associated NS 21
22 Present 40 (70.2) 9 (45.0) 0.034 22
23 Absent 17 (29.8) 11 (55.0) 0.07 23
24 BA association in different types of relapses 24
25 IFRNS 5 (12.5) 4 (44.45) 0.070 25
26 FRNS+SDNS 33 (82.5) 4 (44.45) 0.031 26
27 SRNS 2 (5.0) 1 (11.10) 0.999 27
28 No. of relapses 28
29 <4 13 (22.8) 18 (90.0) <0.001 29
≥4 44 (77.2) 2 (10.0) <0.001
30 30
Drug toxicity (steroid) 21 (36.8) 2 (10.0) 0.044
31 31
32 1. Educational status of parents. *The χ2 test and **Fisher’s exact test were done 32
33 2. For monthly income, the χ2 test was done 33
34 3. Average cost comparison per relapse between compliant and non-compliant patients. **Fisher’s exact test was done 34
35 4. Number of relapses in a year between non-compliant and compliant patients. Fisher’s exact test was done 35
5. In BA association, the χ2 test was done
36 36
6. Distribution of BA patients (n=49) according to the type of NS. Fisher’s exact test was done
37 37
7. Number of relapses in a year between non-compliance and compliance patients. Fisher’s exact test was done
38 38
39 and undetermined cause (17.50%) were observed as main observed a linear decrease in hospitalization rates from 30% 39
40 contributing factors for non-compliance. to 13% as medication compliance increased. 40
41 41
42 In the present study, among non-compliant patients, 43.87% 42
Discussion were non-compliant to asthma medication, whereas 31.57%
43 43
44 Compliance to medications and health-related advice are the was in oral prednisolone which is the mainstay of medication 44
45 big issues in case of chronic disease management. In this in nephrotic child. A study identified that the non-compliant 45
46 study, it was found that 74.02% were non-compliant either to manner to steroid therapy can be accountable for multiple 46
47 medication and or health-related advice. Similar findings have relapses.[24] Similarly, Supramaniam[25] also found that more 47
48 been reported in Aziz and Ibrahim’s study,[20] in which 56% than 59% of hypertensive patients did not adhere to the 48
49 of the patients with chronic diseases such as hypertension, medications prescribed. But Setyawati et al.[18] showed different 49
50 ischemic heart disease, diabetes, and BA were non-compliant. findings in their work, in which 30 patients adhered to the 50
51 prednisolone regimen and 15 were non-adherent to the regimen. 51
Adherence in taking the medication is fundamental in the
52 management of NS. In chronic diseases such as diabetes, In our study, 15.78% did not come for follow up when 52
53 adherence to medications is associated with better control of they experienced relapse and 56.14% did not follow advice 53
54 intermediate risk factors, less hospitalization, lower healthcare to perform bed side urine albumin test in the morning, 54
55 costs, and lower mortality.[21,22] Zyczynski and Coyne[23] also which will helps in the early detection of relapse. Our study 55
56 56

Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021 5

 Roy, et al.: Non-compliance in pediatric NS

1 findings coincide with Diong et al.’s[26] study, in which they department visits, or hospitalization, which ultimately result 1
2 executed that deficit in parental knowledge especially in home in increased cost of medical care.[27] 2
3 urine dipstick monitoring (health advice) and recognition of 3
The parental education system plays a crucial role in
4 warning signs during relapse were the main issues of non- 4
compliance to medications and/or health-related advice. Low
5 compliance. 5
literacy is associated with more hospitalizations, greater use of
6 6
Among compliant patients, only 10% had four or more relapses emergency care, less adherence to treatment recommendations,
7 7
per year, whereas a significant number of non-compliant worse health status, and higher mortality rates.[28] The parental
8 8
patients (77.19%) had experienced four or more relapses per education will help to know the disease’s nature and the
9 9
year as well as drug toxicity also. This non-compliance either treatment’s goal comprehensible for all families and that might
10 10
to medications and/or health-related advise ultimately leads have contributed to the remission status. Usually families
11 11
to increased frequency of relapses and hospitalization. In the with a low background in education may require more time
12 12
present study, 29.9% of the patients had features of steroid to understand the messages. Several studies also had shown
13 13
toxicity. It was more prevalent among non-compliant patients that repeated education-based program on patient or parent
14 14
(36.8%). Frequent use of oral steroid for repeated relapses, in cognitive abilities increased the awareness and patient’s
15 15
addition to self-medication, contributed to higher prevalence outcomes.[18]
16 16
of steroid toxicity. The previous study in this regard noted that
17 We also had almost similar observation. Among non-compliant 17
due to side effects of drugs patients face unnecessary tests,
18 parents, a significant portion of parents were illiterate (70.19%). 18
dosage adjustments, changes in the treatment plan, emergency
19 Charnaya and Ann[29] found that educational background of 19
20 family was linked with non-compliance in NS leading to 20
21 repeated hospitalizations and higher economic cost. 21
22 22
Non-adherence carries a huge economic burden and yearly
23 23
expenditure for its consequences. Due to medication non-
24 24
adherence, estimation of hospital costs is as high as 13.35
25 25
billion dollars annually in the USA alone.[22] This study has
26 26
revealed that 95% of the compliant patients had spent less than
27 27
30,000 taka per relapse, whereas 31.6% of the non-compliant
28 28
patients had spent between 30,000 and 70,000 taka for each
29 29
episode of relapse and are statistically significant (P =0.05).
30 30
Various studies have reported that medication compliance is
31 31
inversely associated with total healthcare costs per patient.[30-34]
32 32
33 Our patient had to wait few more days after relapse to collect 33
34 money and to settle other family urgent matter before they had 34
35 to start for BSMMU hospital. Families were physically and 35
36 financially exhausted. Out-of-pocket money has come from 36
37 regular income, social contribution, borrowing, and selling 37
38 belongings. 38
39 39
BA is a well-established precipitating factor for NS relapse and
40 40
non-complaint patients experienced higher rate of relapses,
41 41
repeated steroid therapy, and hence steroid toxicity.[24,35] Among
42 42
our study population, about 63.6% (49/77) of the patients
43 43
had BA and 70.2% (40/57) of non-complaint patients had
44 44
BA in comparison to complaint counterpart 45% (9/20),
45 45
Figure 1: Distribution of patients (n = 77) according to compliance, whereas which is statistically significant. The present study revealed
46 46
74.02% of the patients belonged to the non-compliance group that the majority of non-compliant patients who had BA
47 47
48 48
49 Table 3: Distribution of patients among non-compliance (n = 57) to health advice 49
50 No. of patients (N=57) Percentage (%) 50
51 Follow-up after relapse 51
52 Seek 48 84.21 52
53 Not seek 9 15.78 53
54 Bed side urine albumin (BSUA) 54
55 Done 25 43.86 55
56 Not done 32 56.14 56

6 Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021

 Roy, et al.: Non-compliance in pediatric NS

1 1
2 2
3 3
4 4
5 5
6 6
7 7
8 8
9 9
10 10
11 11
12 12
13 13
14 14
15 15
16 16
17 17
18 18
19 19
20 20
21 21
22 22
23 23
24 24
25 25
26 26
27 27
28 28
29 29
30 30
31 31
32 32
33 Figure 2: Percentage of non-compliance patients (n = 57) according to medication 33
34 34
35 35
36 36
37 37
38 38
39 39
40 40
41 41
42 42
43 43
44 44
45 45
46 46
47 47
48 48
49 49
50 50
51 51
52 52
53 53
54 Figure 3: Infection rate between non-compliant and compliant patients. Fisher’s exact test was done 54
55 55
56 56

Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021 7

 Roy, et al.: Non-compliance in pediatric NS

1 1
2 2
3 3
4 4
5 5
6 6
7 7
8 8
9 9
10 10
11 11
12 12
13 13
14 14
15 15
16 16
17 17
18 18
19 19
20 20
21 Figure 4: Causes of non-compliance (n = 57) 21
22 22
23 experienced frequent relapses and 43.87% of the patients were patients. Numerous studies have demonstrated that non- 23
24 non-compliant to asthma medications including reliever and compliance with prescribed medication results in increased 24
25 preventer nebulization, inhalers, and oral montelukast, which morbidity and mortality from a wide variety of illnesses, as 25
26 might play a significant role in repeated hospital admissions well as increased healthcare costs.[13,23] Sokol et al.[31] reported 26
27 among non-complaint patients. In western population, non- that lowest hospitalization (13%) and less complication rates 27
28 compliance to asthma medications is quiet high around 50%.[35] were observed in type 2 DM patients due to the highest level 28
29 of medication compliance. 29
Our parents did not know why they would not give asthma
30 30
medications. Parents stopped medication as they felt better; Non-compliance is associated with loss of productivity in terms
31 31
this attitude may decrease their compliance to asthma drugs. of absence for schoolgoing children and number of days missed
32 32
from work for parents attendants. But we could not report
33 No single factor consistently influenced medication compliance. 33
exact school day losses due to repeated hospital admissions
34 Various parameters influence medication compliance such as 34
in our patients, as schools were closed due to Covid-19 crisis.
35 age, gender, community, remote location, income, parental 35
There were several limitations identified in our study such as
36 education and occupation, number of children, number of 36
study design, single-center study, small sample size, and no
37 family members, form of medicine, number of medicines, 37
longitudinal follow-up had done. Data had been collected via
38 etc.[36] Two-third patients could not come at the right time 38
interviewers, so biasness was also present indeed.
39 because of distant location of their residence to health facility. 39
40 40
Negligence and poverty play important roles in medication Conclusion
41 41
compliance.[37] Poverty associated with low socioeconomic
42 Poor compliance to medications and health-related advices 42
status can seriously affect the ability and motivation of an
43 in NS have diverse effects including frequent relapse, drug 43
individual or family to manage chronic illness.[27] In our study,
44 toxicity, and higher rates of complication; hence, increased 44
we found that 36.8% of the non-compliant patients belong to
45 healthcare cost, health facility, poverty, educational background, 45
lower socioeconomic background (monthly family income less
46 ignorance, and idiopathic causes were major contributing 46
than 10,000 taka, 1 dollar =85.5 taka). Poor financial condition
47 factors behind non-compliance issue. All intrusiveness control 47
and overall ignorance contributed more to non-compliance;
48 issues including patients as well as parental education should 48
29.54% of total non-compliance was due to financial constraints
49 be addressed in intervention efforts to improve compliance in 49
and another 17.54% was due to ignorance or unknown etiology.
50 patients with NS. Appropriate counseling might change this 50
51 In our study, non-compliant patients had higher rates of prevailing non-compliant scenario in future. 51
52 infectious complications. About 63.2% of non-compliant 52
53 patients had pneumonia, 10% had peritonitis, 7% had Financial support and sponsorship 53
54 UTI, and 3% had meningitis. Antibiotics for infectious The content is solely the responsibility of the authors and does 54
55 complications along with other costs during hospital stay not necessarily represent the official views of the National 55
56 are responsible for higher cost per relapse in non-compliant Institutes of Health. 56

8 Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021

 Roy, et al.: Non-compliance in pediatric NS

1 Conflicts of interest N, Emma F, Goldstein SL, editors. Pediatric nephrology. 7th ed. 1
2 Heidelberg Newyork, Dordrecht London: Springers Reference; 2
The authors declare that there is no conflict of interests 2016. p. 839-82.
3 3
regarding the publication of this paper. 20. Aziz AM, Ibrahim MI. Medication noncompliance–a thriving
4 4
problem. Med J Malaysia 1999;54:192-9.
5 References 5
21. World Health Organization. Adherence to Long-term Therapies:
6 Evidence for Action. Geneva: World Health Organization; 2003. 6
1. Haynes RB, Taylor DW, Sackett DL (eds). Compliance in Health
7 22. Kirkman MS, Rowan-Martin MT, Levin R, Fonseca VA, 7
Care. Baltimore: The John Hopkins University Press; 1979. pp. 1-2.
8 2. Fred K. Understanding Noncompliant Behavior: Definitions and Schmittdiel JA, Herman WH, et al. Determinants of adherence 8
9 Causes. The Permanente Journal 2003;7:18-21. to diabetes medications: Findings from a large pharmacy claims 9
10 3. Kaveh K, Kimmel PL. Compliance in hemodialysis patients: database. Diabetes Care 2015;38:604-9. 10
11 Multidimensional measures in search of a gold standard. Am J 23. Zyczynski TM, Coyne KS. Hypertension and current issues in 11
12 Kidney Dis 2001;37:244-66. compliance and patient outcomes. Curr Hypertens Rep 2000;2:510- 12
13 4. Griva K, Lai AY, Lim HA, Yu Z, Foo MW, Newman SP. Non- 4. 13
14 adherence in patients on peritoneal dialysis: A systematic review. 24. Ducharme FM, Zemek RL, Chalut D, McGillivray D, Noya FJ, 14
Plos One 2014;9:e89001. Resendes S, et al. Written action plan in pediatric emergency room
15 15
5. Wild H. The economic rationale for adherence in the treatment of improves asthma prescribing, adherence, and control. Am J Respir
16 Crit Care Med 2011;183:195-203. 16
type 2 diabetes mellitus. Am J Manag Care 2012;18:S43-8.
17 25. Supramaniam V. Study of malaysian military hypertensives–therapy 17
6. Chapman KR, Walker L, Cluley S, Fabbri L. Improving patient
18 compliance with asthma therapy. Respir Med 2000;94:2-9. compliance. Med J Malaysia 1982;37:249-52. 18
19 7. Iskedjian M, Einarson TR, MacKeigan LD, Shear N, Addis A, 26. Diong SC, Syed Zakaria SZ, Rasat R, Wan Ismail WJ. Parental 19
20 Mittmann N, et al. Relationship between daily dose frequency and knowledge on nephrotic syndrome and disease relapse in children. 20
21 adherence to antihypertensive pharmacotherapy: Evidence from a Med J Malaysia 2019;74:288-95. 21
22 meta-analysis. Clin Ther 2002;24:302-16. 27. Chironda G, Bhengu B. Contributing factors to non-adherence 22
23 8. Eddy AA, Symons JM. Nephrotic syndrome in childhood. Lancet among chronic kidney disease (CKD) patients: A systematic review 23
of literature. Medical & Clinical Reviews 2016;2:1-9.
24 2003;362:629-39. 24
9. Roy RR, Mamun AA, Jesmine T. Nephrotic syndrome. In: Roy RR, 28. Tavasoli S, Heidarnazhad H, Kazemnejad A. Factors affecting
25 25
Mamun AA, Jesmine T, Fatema K, editors. Paediatric student manual. patients’ compliance to metered-dose inhaler drugs in two asthma
26 clinics in tehran, iran. Iran J Allergy Asthma Immunol 2006;5:187-
26
1st ed. Shahbag, Dhaka-1000, Bangladesh: Paediatric study group;
27 2020. p. 821-1007. WWW.pediatricbooks.net. 93. 27
28 10. Wong W. Idiopathic nephrotic syndrome in new zealand children, 29. Charnaya O, Ann SU. Quality improvement initiative to reduce 28
29 demographic, clinical features, initial management and outcome after admission for nephrotic syndrome relapse in pediatric patients. 29
30 twelve-month follow-up: Results of a three-year national surveillance Frontiers in Pediatrics 2019;7:1-5. 30
31 study. J Paediatr Child Health 2007;43:337-41. 30. Shenolikar RA, Balkrishnan R, Camacho FT, Whitmire JT, 31
32 11. Meadow SR, Sarsfield JK. Steroid-responsive and nephrotic syndrome Anderson RT. Comparison of medication adherence and associated 32
33 and allergy: Clinical studies. Arch Dis Child 1981;56:509-16. health care costs after introduction of pioglitazone treatment in 33
african americans versus all other races in patients with type
34 12. MacHardy N, Miles PV, Massengill SF, Smoyer WE, Mahan JD, 34
Greenbaum L, et al. Management patterns of childhood-onset 2 diabetes mellitus: A retrospective data analysis. Clin Ther
35 2006;28:1199-207.
35
nephrotic syndrome. Pediatr Nephrol 2009;24:2193-201.
36 31. Sokol MC, McGuigan KA, Verbrugge RR, Epstein RS. Impact of 36
13. Cramer JA, Benedict A, Muszbek N, Keskinaslan A, Khan ZM. The
37 significance of compliance and persistence in the treatment of diabetes, medication adherence on hospitalization risk and healthcare cost. 37
38 hypertension and dyslipidaemia: A review. Int J Clin Pract 2008;62:76- Med Care 2005;43:521-30. 38
39 87. 32. Cherry JC, Moffatt TP, Rodriguez C, Dryden K. Diabetes disease 39
40 14. Modi AC, Pai AL, Hommel KA, Hood KK, Cortina S, Hilliard ME, management program for an indigent population empowered by 40
41 et al. Pediatric self-management: A framework for research, practice, telemedicine technology. Diabetes Technol Ther 2002;4:783-91. 41
42 and policy. Pediatrics 2012;129:e473-85. 33. Ciechanowski PS, Katon WJ, Russo JE. Depression and diabetes: 42
43 15. Ozen N, Cinar FI, Askin D, Mut D, Turker T. Nonadherence in Impact of depressive symptoms on adherence, function, and costs. 43
hemodialysis patients and related factors: A multicenter study. J Arch Intern Med 2000;160:3278-85.
44 44
Nurs Res 2019;27:e36. 34. DiMatteo MR, Giordani PJ, Lepper HS, Croghan TW. Patient
45 adherence and medical treatment outcomes: A meta-analysis. Med
45
16. Ingerski L, Perrazo L, Goebel J, Pai AL. Family strategies for
46 achieving medication adherence in pediatric kidney transplantation. Care 2002;40:794-811. 46
47 Nurs Res 2011;60:190-6. 35. Liu AH, Spann JD, Sicherer SH. Childhood asthma. In: Kligman 47
48 17. Feinstein S, Keich R, Becker-Cohen R, Rinat C, Schwartz SB, RM, St Geme JW, Blum NJ, Suan S, Tasker RC, Wilson KM, editors. 48
49 Frishberg Y. Is noncompliance among adolescent renal transplant Nelson Textbook of Pediatrics. 21st ed. Philadelphia, USA: Elsevier; 49
50 recipients inevitable? Pediatrics 2005;115:969-73. 2019. p. 1186-208. 50
51 18. Santer M, Ring N, Yardley L, Geraghty AW, Wyke S. Treatment 36. Russell CL, Cronk NJ, Herron M, Knowles N, Matteson ML, 51
52 non-adherence in pediatric long-term medical conditions: Systematic Peace L, et al. Motivational interviewing in dialysis adherence study 52
AQ1 review and synthesis of qualitative studies of caregivers’ views. BMC (MIDAS). Nephrol Nurs J 2011;38:229-36.
53 53
Pediatr 2014;14:1-0. 37. La Greca AM, Schuman WB. Adherence to prescribed medical
54 54
19. Niaudet P, Boyer A. Idiopathic nephrotic syndrome in children: regimens. In: Roberts MC, editore. Handbook of Pediatric
55 Clinical aspect. In: Avner ED, Harmon WE, Niaudet P, Yoshika Psychology. New York: Guilford; 1995. p. 55-83.
55
56 56

Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021 9

 Roy, et al.: Non-compliance in pediatric NS

1 Author Query??? 1
2 AQ1: Please check the end page range for Ref. 18 for correctness. 2
3 3
4 4
5 5
6 6
7 7
8 8
9 9
10 10
11 11
12 12
13 13
14 14
15 15
16 16
17 17
18 18
19 19
20 20
21 21
22 22
23 23
24 24
25 25
26 26
27 27
28 28
29 29
30 30
31 31
32 32
33 33
34 34
35 35
36 36
37 37
38 38
39 39
40 40
41 41
42 42
43 43
44 44
45 45
46 46
47 47
48 48
49 49
50 50
51 51
52 52
53 53
54 54
55 55
56 56

10 Paediatric Nephrology Journal of Bangladesh | Volume XX | Issue XX | Month-Month 2021