Assessment Of Health Related Quality Of Life Of Children With Nephrotic Syndrome and Their Care Takers At A Tertiary Hospital In Addis Ababa, Ethiopia

doi:10.21203/rs.3.rs-2364947/v1

Download PDF

Research Article

Assessment Of Health Related Quality Of Life Of Children With Nephrotic Syndrome and Their Care Takers At A Tertiary Hospital In Addis Ababa, Ethiopia

https://doi.org/10.21203/rs.3.rs-2364947/v1

This work is licensed under a CC BY 4.0 License

Version 1

posted

You are reading this latest preprint version

Background: Nephrotic syndrome (NS) is one of the commonest pediatric chronic renal problems affecting children’s worldwide. Beyond the well-known effects of on kidney function, NS can also have impact on the patients and care givers life style, peer relationship, social functioning, intellectual functions and behavioral characteristics. Objective: To assess the quality of life of children with NS as well as their caregivers and to determine the factors that adversely affect it. Methods: A cross-sectional analytical study conducted using a pre coded, pretested structured questionnaire including PedsQoLTM 4.0 scale score generic core and family impact module. Data obtained for demographic and clinical parameters of children and for each domain of generic core and family impact module and data was be analyzed using IBM SPSS® version 26. Results: 153 children aged 4-18 years with NS were included over a period of three months. Among the scores with median (inter-quartile range) the domains of generic core scale, child school performance was most affected with 73(53.0-97.5) followed with child physical performance 87(75-97.5). Children whose parents were earning less (p=0.009), children having hypertension (p=0.047) and steroid resistant clinical type (p=0.016) of NS were at increased odds of encountering poorer child health related quality with AOR of 0.306, 2.464 and 2.560 respectively. In the family impact module domains with median (inter-quartile range), the most affected are being ‘worry’ with 60.0 (45.5-75), followed with emotion 77(54.5-90.0). It was demonstrated that caregivers of child with hypertension are at 4.3times(AOR,4.3, p=0.016)increased risk of having poorer quality of life(QoL) than those without. Conclusion: School performance and ‘worry’ are the most affected domains in child generic scale and family impact modules respectively. Low socioeconomic status, Steroid resistant nephrotic syndrome and hypertension are also associated with poorer HRQoL.

Nephrotic syndrome

Health related quality of life

children

parents

care giver

Ethiopia

Nephrotic syndrome encompasses a diverse group of conditions that share the common denominator of massive loss of protein in the urine. It is characterized by edema, proteinuria, hypoalbuminemia, and hyperlipidemia. Minimal change disease is the most common histologic type in childhood [1] .

Nephrotic syndrome can affect children of any age, from infancy to adolescence, and is most commonly seen among school-aged children and adolescents. Nephrotic syndrome affects 1–3 per 100,000 children < 16 year of age. Males appear to be more affected than females at a ratio of 2:1 in children, but this predominance fails to persist in adolescence [4]. Not Infrequently, NS spans a significant portion of a child’s formative years. The primary nephrotic syndromes is a significant cause of end-stage renal disease(ESRD) across all ages in the United States, causing up to 13.1% of ESRD cases in children [7]. It is also among common chronic renal conditions in Tikur Anbessa Specialized Hospital(TASH),Addis Ababa, Ethiopia ,accounting for 16.9% of renal related hospital admissions[5]

In general, most chronic diseases including nephrotic syndromes have hard impact on ill children's life style, psychological and physical development. In the past years, even if medical cures allowed these children to live longer and to have a better quality of life, both their families and themselves have to face a lot of difficulties due to the kind of pathology. These children show behavioral troubles, bad sociability, aggressiveness, poor school performance, anxiety and depression, and then the subjects with chronic renal failure show a retard in neurological and cognitive development [6].

There is scant literature describing the effect of the glomerular disease on HRQoL and no published article on the topic in Ethiopia so far, and to the best of our knowledge, this study is the first to look into the HRQoL of children and adolescents with NS as well as their caretakers and parents in East Africa .The existing literature done elsewhere in the world show significant impact peer relationship and pain interference social functioning and school functioning ,moreover significant impact on intellectual functions and behavioral aspects including anxiety and depression [8][9]. There are several behavioral abnormalities, especially regarding the aggressiveness, anxiety and depression; attention problems and thought problems have obtained increases in their scores [10]. Corticosteroids which are the mainstay of treatment of nephrotic syndrome were attributed as cause, as children on treatment often experiencing significant problems with anxiety, depression and increased aggression during high dose steroid therapy.

Parents and primary care givers are also facing serious impact of disease a manifested with the aspects of emotional psychiatric and financial difficulties adding to the burden they already hold [11].

Study setting:

The study was conducted in TASH, pediatrics department in the pediatric renal follow-up clinic. TASH is Ethiopia’s largest general public hospital. In 1998 TASH, which is also the largest referral hospital in the country was given to Addis Ababa University from the Ethiopian Ministry of Health for the college as a main teaching hospital. The college is the oldest and the largest among the health training institutions in the country, staffed with the most senior specialists. The hospital provides a tertiary level referral treatment and is open 24 hours for emergency services. The hospital is administered by Addis Ababa University and providing teaching for about 300 medical students and 350 Residents every year. TASH offers diagnosis and treatment for approximately 370,000- 400,000 patients a year. The hospital has 800 beds, with 130 specialists, 50 non-teaching doctors. The emergency department sees around 80,000 patients a year. In general, Children with nephrotic syndrome are followed at 1 week − 6 months intervals in the renal follow up clinic. At each clinic visit, the following assessments are performed: measurement of blood pressure, weight and height measurement, complete physical examination, evaluation of adherence to medication and side effects as well as disease condition, by a team consisting of a pediatric nephrologist, pediatrics and child health residents, clinical nurses and supporting staffs.

Study design:

An analytical cross-sectional study was conducted from the study period from May 1, 2020 to September 30, 2020 G.C. Data was collected from log books for sampling frame and tracing patients and patient charts for clinical and investigational parameters. A self-administered questioner was used for children age more than 8 and parents. For children less than 8 years data was collected from their parent as proxies to complete the generic core and family modules of PedsQoL™. Due to current COVID-19 pandemic and decreased patient flow to the clinic some of the questioners were filled via phone call interview for children, parent and parent proxies.

Sample size and sampling:

The sample size was determined using single population proportion formula based on the assumption that Z (standard value for 95% confidence interval) = 1.96; CI (confidence interval) = 95%; D (margin of error) = 0.05; P = 16.9% (which is the prevalence of nephrotic syndrome among total renal related admissions in lack lion specialized hospital).Q = 1-P which is equal to 0.83. Having applied a resource correction formula the sample size is set at 174 patients.

The study subjects were selected using simple random sampling technique taking every second child after obtaining the list of all children and adolescents with Nephrotic syndrome on follow up at Pediatric renal clinic at TASH, using follow-up registration book as sampling frame. Children and adolescents with first episode of NS and additional chronic diseases or syndromes that could alter quality of life of the patients are excluded.

Data collection:

Data collection was by using structured and pre-tested questionnaire. It was prepared in English and was translated to Amharic version by professional translator which was reviewed again by investigator and advisor, for better understanding of parents and children. Based on the pretest results before the study period modifications were made on the questionnaire. It was consisting of socio-demographic information, selected clinical variables and Pediatric Quality of Life Inventory™ (PedsQoL™) version 4.0 generic and family impact module after we obtained permission from the MAPI Research Trust ,France, after signing the User Agreement with knowledge of the author Dr. Varni, James Walter with official Email communication (see annex 2 for agreement) for assessment of impact on life quality. The validated and age appropriate version of PedsQoL 4.0, Pediatric Quality of Life Inventory™ (PedsQoL™) version 4.0 generic questionnaire was parent administered for those children below 8 years and child administered for those children aged above 8. The family impact module was administered by parents. The parameters on the questionnaire were scored on a five-point Likert scale. The completed questionnaires were assessed for data entry. The scores were generated according to the developer’s scoring system 2 and were then reversed and linearly transformed to a 0-100 scale where 0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0. Higher scores indicate better HRQoL and factors evaluated for their role in affecting Health related quality of life. Data collection was undertaken by the principal investigator, three assigned residents and four nursing staffs working at the follow up clinic who received brief explanation about data collection before study period.

Data processing and analysis:

After data collection, each data set was checked for completeness based on the code given during data collection. The data was entered in to SPSS version 26 statistical package. Coding of individual questionnaires was checked before data entry into the software. Further data cleaning was performed to check for outliers, missed values and any inconsistencies before the data was analyzed using the software. Descriptive statistics was used to describe the independent variable. The magnitude of the association between the different variables in relation to the Health-related quality of life was measured using odds ratios (OR). A confidence limit of 95% and p-value less than 0.05 was considered statistically significant.

Operational definitions:

1. Child’s Health-related quality of life (HRQoL): A child’s perceived physical ability, social, emotional health and school performance over past one month.

2. Parent/caretaker’s Health -related quality of life (HRQoL): one’s perceived physical ability, emotion, social functioning, communication, family relationships, worry, daily activities and cognitive function over past one month.

3. Better Health- related quality of life: those participants scoring average score of child or family HRQoL module above the median calculated from the whole study population.

4. Poorer Health-related quality of life: those participants scoring average score of child or family HRQoL module below the median calculated from the whole study population.

5. Pediatric age: means age less than 18 year

6. Adolescent: any person between ages 10 and 18

7. Remission: Nil or trace proteinuria (< 30mg/dl or < 4mg/m2/h) by dipstick for three consecutive days.

8. Frequent relapses: Two or more relapses in initial six months or more than three relapses in any twelve months.

9. Infrequent relapse: Less than two relapses in initial six months or three or less relapses in twelve months.

10. Steroid sensitive nephrotic syndrome (SSNS): Achieving remission within four weeks of daily oral prednisolone.

11. Steroid resistant nephrotic syndrome (SRNS): Failure to achieve remission after eight weeks of appropriate daily dose prednisolone.

12. Relapse: Recurrence of 100mg/dl (≥ 2+) proteinuria by dipstick for three consecutive days after achieving remission.

13. Steroid dependent nephrotic syndrome (SDNS): Two consecutive relapses during alternate day steroid therapy or within two weeks after cessation of steroid

Ethical clearance:

The proposal was submitted and clearance was obtained from the DRPC of Addis Ababa University, College of Medicine. Parents were given a written consent and children were requested for assent prior to their participation in the study. A written consent form has been developed that stipulates clearly that their participation will be voluntary, they have the freedom to refuse to respond to any of the questions, and also, they have a full freedom to withdraw from the evaluation at any time. It was made clear from the beginning that no payment will be made to individuals in return for participating in the study and confidentiality & storage of data was explained to the participants. It was made clear that the answers provided during the course of the interview will be treated with utmost confidentiality and used for study purpose only. The written consent and assent were translated to Amharic language.

Socio-demographic characteristics

Of the total 195 calculated study participants 153 were approached and participated in the study, the mean age of children was 10.3 years with standard deviation (SD) of (± 3.69). While, 78 (51%) were, in the age range of 1–10 years. 109(71.2%) were male children whereas, 68 (44.4%) were from the capital city (Addis Ababa). 58 (37.9%) subjects have attended primary school and 92 (60.1%) of parents of the children were having a private job. Of the total participants, 129 (84.3%) were living both parents and 148 (96.7%) were living in a family having a family size of 3–8 and 53 (34.6%) of the children family were earning monthly income of > = 8000 Ethiopian birr(ETB) (Table 1).

Table 1

Socio-Demographic characteristics among children with Nephrotic Syndrome on follow up at renal clinic, TASH, Addis Ababa, Ethiopia from May 1, 2020-September 30, 2020
Variables	Frequency (N = 153)	Percentage (%)
Age group
1–10 years	78	51
11–19 years	75	49
Sex
Male	109	71.2
Female	44	28.8
Address
AddisAbaba(AA)	68	44.4
Half day travel from AA	38	24.8
A day travel from AA	29	19
More than a day travel from AA	18	11.8
Living conditions
Living with both parents	129	84.3
Living with one parent	21	13.7
Living with relative	3	2
Educational Status (Parent)
Illiterate	13	8.5
Primary education	58	37.9
Secondary education	47	30.7
Degree	35	22.9
Job of parents
Not working	2	1.3
Private	92	60.1
Government	38	24.8
Farmer	21	13.7
Family size
3–8	148	96.7
9–13	5	3.3
Family Income(ETB)
1000–4000	48	31.4
4000–8000	52	34
>=8000	53	34.6

Clinical and laboratory Characteristics

Among the children with NS, 69(45.1%) of children were having an illness lasing for 1–3 years. Ninety-five (62.1%) of them were having a negative proteinuria result within the past 3 months. While 69(45.1%), 105(68.6%), 59(38.6%) and 72(47.1%) of the children were infrequently relapsing type of NS and were on prednisolone taking the medication for 1–3 years and developed hypertension as a complication respectively (Table 2)(Table 3) (Fig. 1) (Fig. 2).

Table 2

Medications used among children with Nephrotic Syndrome on follow up at renal clinic, TASH, Addis Ababa, Ethiopia from May 1, 2020 – September 30, 2020
Medication	Frequency(N = 153)	Percentage (%)
Prednisolone	105	68.6
Levamisole	26	17
Cyclophosphamide	6	3.9
Cyclosporine A	3	2
MMF	13	8.5

Table 3

Duration of illness among children with Nephrotic Syndrome on follow up at renal clinic, TASH, Addis Ababa, Ethiopia from May 1, 2020 – September 30, 2020
Duration of Illness	Frequency (N = 153)	Percentage (%)
6–12 month	8	5.2
1–3 years	69	45.1
3–6 years	46	30.1
> 6 years	30	19.6

Correlation among Child health related quality of life (Child HRQoL) tool parameters

There was a strong and positive correlation in between all domains of child health related quality of life as well as the generated average score used for final analysis indicating that the average score is representative for all the domains and all the domains are having significant positive correlation with each other. (Table 4).

Table 4

Correlation of Child HRQoL domains among children with child module average, TASH, Addis Ababa, Ethiopia from May 1, 2020 – September 30, 2020
	Median (inter-quartile range)	Pearson’s Correlation®	Level of significance (P-Value)
School performance	73.0 (53.0-97.5)	0.751	0.0001
Emotion	90.0 (75.0–98.0)	0.699	0.0001
Physical performance	87.0 (75.0-97.5)	0.842	0.0001
Social	94.0 (82.0-100)	0.741	0.0001
Child module Average	83.0(75.0–91.0)

Correlation among Family related quality of life (Family HRQoL) tool parameters

Also, there was a strong and positive correlation in between all domains of family health related quality of life as well as the generated average score used for final analysis indicating that the average score is representative for all the domains and all the domains are having significant positive correlation with each other. (Table 5).

Table 5

Correlation of Family HRQoL tool parameters among children w family module average TASH, Addis Ababa, Ethiopia from May 1, 2020 – September 30, 2020
	Median (inter-quartile range)	Pearson’s Correlation®	Level of significance (P-Value)
Physical	90.0 (75.0-100)	0.640	0.0001
Emotion	77.0 (64.5–90.0)	0.742	0.0001
Communication	100 (78.0-100)	0.625	0.0001
Social	95.0 (75.0-100)	0.630	0.0001
Family Relation	94.0 (77.5–100)	0.599	0.0001
Worry	60.0 (45.5–75.0)	0.637	0.0001
Daily activity	90.0 (75.0-100)	0.736	0.0001
Cognition	92.0(75.0-100)	0.623	0.0001
Family module Average	84.5(77.1–90.0)

Factors associated with poor Child HRQoL

Bivariable was done for eight variables supposed to have an association with quality of life of children. Thereby, four variables, having a p-value of less than 0.25 were taken to the multi-variable logistic regression as candidates (Table 6). Hosmer and Lemeshsow test of goodness of fit of a model was checked and revealed non-significant result (p > 0.8). Finally, three variables having a p-value of less than 0.05 were found to have a statistically significant association with poor health related quality of life of child. The current study revealed, children whose parents were earning monthly income of 4000-8000ETB were at 69.4% decreased odds of developing poor child health related quality of life than those earning below 4000 ETB.Children having hypertension as a complication were at 2.64 increased odds of developing hypertension than those with no complication.Children having steroid resistant clinical type of NS were at 2.5 increased odds of encountering poor child health related quality of life than their counter parts (Table − 6)

Table 6

Bivariable analyses of factors associated with poor Child health related quality of life (Child HRQoL) among children with Nephrotic Syndrome on follow up at renal clinic, TASH, Addis Ababa, Ethiopia.
Variables	Child HRQoL		COR (95% CI)	P-value
	Poorer	Better
	No (%)	No (%)
Age group 1–10 11–18	33 (45.2%) 40 (54.8%)	45 (56.3%) 35 (43.8%)	0.64 (0.823, 2.951) 1	0.172
Sex Male Female	51 (69.9%) 22 (30.1%)	58 (72.5%) 22 (27.5%)	1 0.87 (0.564, 2.291)	0.719
Educational status Illiterate Primary school Secondary school Degree	6 (8.2%) 24 (32.9%) 27 (37%) 16 (21.9%)	23 (8.8%) 34 (42.5%) 20 (25%) 19 (23.8%)	1.018 (0.284, 3.651) 0.838 (0.360, 1.953) 1.603 (0.664, 3.8701) 1	0.978 0.683 0.294 1
Family Income 1000–4000 ETB 4000–8000 ETB > 8000 ETB	25 (34.2%) 19 (26%) 29 (39.7%)	23 (28.8%) 33 (41.3%) 24 (30%)	0.900 (0.411, 1.968) 0.476 (0.218, 1.041) 1	0.791 0.063* 1
Complication Infection Hypertension Cushioned faces Thrombotic events None	11 (15.1%) 39 (53.4%) 12 (16.4%) 0 (0%) 11 (15.1%)	7 (8.8%) 33 (41.3%) 9 (11.3%) 4 (5%) 27 (33.8%)	2.901 (1.252, 6.723) 3.273 (1.075, 9.959) 0.000 (0.000, 0.000) 1	0.013* 0.037* 0.999
Medication Duration 6–12 month 1–3 years 3-6 years > 6 years	9 (12.3%) 34 (46.6%) 16 (21.9%) 14 (19.2%)	15 (18.8%) 25 (31.3%) 24 (30%) 16 (20%)	1 0.686 (0.230, 2.048) 1.554 (0.642, 3.762) 0.762 (0.293, 1.983)	1 0.499 0.328 0.577
Medication Used Prednisolone Levamisole Cyclophosphamide Cyclosporine A MMF	45 (61.6%) 14 (19.2%) 4 (5.5%) 3 (4.1%) 7 (9.6%)	60 (75%) 12 (15%) 2 (2.5%) 0 (0%) 6 (7.5%)	1 0.643 (0.202, 2.044) 1.000(0.263, 3.802) 1.714 (0.228, 12.890)	0.454 1.000 0.601 0.999
Clinical type of NS Infrequent relapsing Frequent relapsing Steroid dependent Steroid resistant	25 (34.2%) 8 (11%) 18 (24.7%) 22 (30.1%)	44 (55%) 4 (5%) 23 (28.8%) 9 (11.3%)	1 0.232 (0.093, 0.582) 0.818 (0.196, 3.415) 0.320 (0.119, 0.862)	0.002* 0.783 0.024*
*-Variables candidates for the multivariable analyses at a p-value < 0.25

Table 7

Multivariable analyses of factors associated with poor Child health related quality of life (Child HRQoL) among children with Nephrotic Syndrome on follow up at renal clinic, TASH, Addis Ababa, Ethiopia.
Variables	AOR (95%CI)	P-value
Age group 1–10 11–19	0.923 (0.444, 1.917) 1	0.923
Family Income 1000–4000 ETB 4000–8000 ETB > 8000 ETB	0.608 (0.247, 1.495) 0.306 (0.126, 0.742) 1	0 .279 0.009** 1
Complication Infection Hypertension Cushioned faces Thrombotic events None	3.285 (0.831, 12.989) 2.464 (1.890, 6.753) 1.570 (0.404, 6.098) 0.000 (0.000, 0.1) 1	0.090 0.047** 0.515 0.999 1
Clinical type of NS Infrequent relapsing Frequent relapsing Steroid dependent Steroid resistant	1 0.309 (0.098, 1.980) 1.298 (0.255, 6.615) 2.560 (1.850, 2.774)	1 0.056 0.753 0.016**
**-Variables statistically significantly associated with the poor child HRQoL at a p value < 0.05

Factors associated with poor Family health related quality of life (Family HRQoL)

Bivariable was done for eight variables supposed to have an association with health-related quality of life of family. Seven variables having a p-value of less than 0.25 were taken to the multivariable logistic regression as candidates (Table 8).One variable having a p-value of less than 0.05 is found to have a statistically significant association with poor health related quality of life of family. Accordingly, Families having a child with hypertension as complication of NS were at 4.3 times increased odds of encountering poor HRQoL than those families having a child with no complication of NS (Table 8).

Table 8

Bivariable analyses of factors associated with poor family health related quality of life (Family HRQoL) among children with NS on follow up at renal clinic, TASH, Addis Ababa, Ethiopia.
Variables	Family HRQOL		COR(95%CI)	P-value
	Poor	Better
	No (%)	No (%)
Age group 1–10 11–19	34 (44.7%) 42 (55.3%)	44 (58.7%) 31 (41.3%)	0.57 (0 .920, 3.341) 1	0.087*
Sex Male Female	54 (71.1%) 22 (28.9%)	53 (70.7%) 22 (29.3%)	1 0.98 (0 .486, 1.980)	0.958
Educational status Illiterate Primary school Secondary school Degree	4 (5.3%) 31 (40.8%) 24 (31.6%) 17 (22.4%)	9 (12%) 26 (34.7%) 23 (30.7%) 17 (22.7%)	0.444 (0.115, 1.725) 1.192 (0.509, 2.791) 1.043 (0.432, 2.5221) 1	0.241* 0.685 0.9251 1
Family Income 1000–4000 ETB 4000–8000 ETB > 8000 ETB	28(36.8%) 25(32.9%) 23(30.3%)	19 (25.3%) 27 (36 29 (38.7%)	1.858 (0.836, 4.132) 1.167 (0.540, 2.526) 1	0 .129 0.694* 1
Complication Infection Hypertension Cushioned faces Thrombotic events None	11 (14.5%) 42 (55.3%) 14 (18.4%) 2 (2.6%) 7 (9.2%)	7 (9.3%) 29 (38.7%) 6 (8%) 2 (2.7%) 31(41.3%)	6.959 (1.987, 24.370) 6.414 (2.488, 16.533) 10.333(2.931, 36.425) 4.429 (0.529, 37.067) 1	0.002* 0.000* 0.000* 0.170* 1
Medication Duration 6–12 month 1–3 years 3–6 years >6 years	5 (6.6%) 31 (40.8%) 19 (25%) 21 (27.6%)	19 (25.3%) 27 (36%) 21 (28%) 8 (10.7%)	1 0.100 (0.028, 0.360 0.437 (0.167, 1.147) 0.345 (0.124, 0.960)	1 0.000* 0.093* 0.041*
Medication Used Prednisolone Levamisole Cyclophosphamide Cyclosporine A MMF	43 (56.6%) 16 (21.1%) 5 (6.6%) 2 (2.6%) 10 (13.2%)	60 (80%) 10 (13.3%) 1 (1.3%) 1 (1.3%) 3 (4%)	1 0.215 (0.056, 0.828) 0.480 (0.106, 2.179) 1.500 (0.123, 18.363) 0.600 (0.039, 9.156)	1 0.025* 0.342 0.751 0.713
Clinical type of NS Infrequent relapsing Frequent relapsing Steroid dependent Steroid resistant	21(27.6%) 11(14.5%) 21(27.6%) 23(30.3%)	47(62.7%) 1(1.3%) 20(26.7%) 7(9.3%)	1 0.136 (0.051, 0.366) 3.348 (0.365, 30.673) 0.320 (0.112, 0.908)	1 0.000* 0.285 0.032*
*-Variables candidates for the multivariable analyses at a p-value < 0.25

Table 9

Multivariable analyses of factors associated with poor Family health related quality of life (Family HRQoL) among children with Nephrotic Syndrome on follow up at renal clinic, TASH, Addis Ababa, Ethiopia. **-Variables statistically significantly associated with the poor child HRQoL at a p-value < 0.05
Variables	AOR(95%CI)	P-value
Age group 1–10 11–19	0.602 (0.254, 0.429) 1	0.250
Educational status Illiterate Primary school Secondary school Degree	0.226 (0.031, 1.642) 0.610 (0.181, 2.052) 0.613 (0.189, 1.990) 1	0.142 0.424 0.415 1
Medication Duration 6–12 month 1–3 years 3–6 years >6 years	1 0.264 (0.054, 1.307) .836(0.222, 3.150) 0.471 (0.125, 1.770)	1 0.103 0.791 0.265
Medication Used Prednisolone Levamisole Cyclophosphamide Cyclosporine A MMF	1.069 (0.180, 6.335) 1.642(0.226, 11.926) 2.267 (0.122, 42.191) 0.454 (0.021, 9.856)	0.942 0.624 0.583 0.615
Family Income 1000–4000 ETB 4000–8000 > 8000ETB	2.095 (0.691, 6.354) 1.125 (0.402, 3.147) 1	0.191 0.822 1
Complication Infection Hypertension Cushioned faces Thrombotic events None	2.946 (0.596, 14.565) 4.300 (1.317, 14.036) 3.181 (0.637, 15.898) 2.753 (0.206, 36.845) 1	0.185 0.016** 0.159 0.444 1
Clinical type of NS Infrequent relapsing Frequent relapsing Steroid dependent Steroid resistant	1 .319 (0.058, 1.757) 3.450 (0.282, 42.267) 0.309 (0.064, 1.488)	1

In our assessment of children quality of life using PedQoL child module 4.0 there was a strong and positive correlation in between all domains of child health related quality of life as well as the generated average score used for final analysis. This indicates that the average score is representative for all the domains and all the domains are having significant positive correlation with each other showing the pervasive nature of the disease in affecting the child’s social well-being, emotion, physical performance, and school performance. Further the most affected component of the child module was school performance characterized by missed school days due to hospital visit or sickness, reduced attention at school and inability in keeping up with peers. This finding is similar to a study from India on Assessment of Quality of Life in Children with Nephrotic Syndrome at a Teaching Hospital in South India(21) and by another study from Nigeria on The Clinical Parameters Affecting the Health-Related Quality of Life of Children with Nephrotic Syndrome [25] which showed school performance to be affected the most. A study Fadia Zyadaa et al.[9] demonstrated statistically significant difference between children with nephrotic syndrome and controls as regards the mean intelligence quotient which can be considered as a cause for low school scores along with missed school days. On the contrary, on Rüth et al evaluation of QoL and psycho-social adjustment from the Netherlands only the QoL subscale ‘social function’ was impaired [19].Poorer educational set up in developing counties to address children with difficulties can also be incriminated .Thus giving different picture in African and other developing countries with that of developed western society.

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 socio- economic status (27).In addition according to a study by Doaa et al. the emotional and social domains of the score are found to be affected by the complications of prolonged high dose usage of prednisolone [26] and in our study participants over utilization of prednisone is noted, only 20.9(32%) of patients take prednisolone sparing agents despite 72(47%) of them have steroid resistant and steroid dependent NS.

Children whose parents were earning less, children having hypertension and those with steroid resistant clinical type of NS were at increased odds of encountering poor child HRQoL. The factors might imply parents’ ability to provide for their children, further pill burden, stress related with hypertension, frequent follow up visits at clinics, treatment with costly, usually unavailable and numerous drugs for steroid resistant NS would contribute for the poor quality of life of these children. Similarities are seen with the study from Nigeria on The Clinical Parameters Affecting the Health-Related Quality of Life of Children with Nephrotic Syndrome, which showed steroid resistant NS was associated with poor HRQoL. In addition, non-minimal change disease NS(MCNS) is associated with inferior quality of life in the Nigerian study, which is not demonstrated in this study due to unavailability of histologic diagnosis. According to Aphaia et al. different HRQoL scores were seen in different medications with RT found to have a statistically significant impact [28]. Such variation across different medication groups was not demonstrated in this study. This could be as a result of majority of the children using prednisolone alone or in conjunction with other drugs which may mask the presumed correlation.

Similarly impact of NS on life quality of parents and care givers is overlooked with scant literature aimed at assessing the degree of impact as well as factors associated with poor HRQOL. In this study we have tried to look in to multidimensional impacts using PedQoL family module 4.0 whereas the existing literature only focused on assessing stress of parents with their child’s condition [29][30]. Pervasive nature of the disease in affecting all eight components of family module was also seen similarly as that of child module.’Worry’ described by dwelling on side effects of medication, impact of NS on the child future and family, efficacy of treatment of the child and others impression on their child condition. Similarly, ‘worry’ is the most affected component in Kirtisudha et al study in assessing The Impact of pediatric NS on Parents’ health related quality of life and family functioning [31] using similar assessment tool. A study by Fadia Zyadaa et al. designated parents and care givers having a child with NS had withdrawal, anxiety/depression, and thought and attention problems [9], which can be defined as worry when compared to ones with well child. This study also shows that a parent or care giver with a child with hypertension are 4.2 times more likely to have a poorer HRQoL. Considering ‘worry’ to be the most affected component, parent’s knowledge of a diagnosis of hypertension in their young child may not consider reversible causes of hypertension in this patient, which is commonly caused by drugs used to treat NS. Hypertension is also seen to be determinant of poor QoL in children which may indicate poor QoL in parents might reflect in to child’s QoL. Other pertinent determinants like female gender having negative impact in Kirtisudha et al and better family income associated with better QoL in Tsai et al are also demonstrated. Similarly, a study by Sulagna Mitra & Sushmita Banerjee [30] demonstrated lower income and medical expenses were seen to have impact on family’s HRQoL, which both were not seen in this study probably due to families and care givers don’t to pay much for checkups and medications in TASH.

Limitation of the study:

For better understanding of the burden of NS on HRQoL stratification and comparison of children with NS with their healthy counterparts can give a better perspective but this design was more time and resource consuming since it requires wider community assessment, the occurrence of the global COVID-19 pandemic has reduced the patients seen at the clinic requiring phone call interviews for addressing the total sample size this could affect the quality of data obtained.

This study revealed that a relatively benign chronic disorder can disturb the HRQoL of children and parents in multiple domains of life. Further factors responsible for relatively poorer HRQoL have been identified even if some of this factor are not modifiable these higher risk groups can be identified and receive a better attention and support. Utilization of such dependable tools in assessing HRQoL can be made an element of clinical evaluation of patients and this study can be the groundwork for such initiatives. Educators, counselors and psychotherapists should be integrated as part of the managing team and a way of incorporating the respective schools should be sought. Clinical remission should not be the only target of management. Information obtained from HRQoL scores should also be addressed and followed.

ACKNOWLEDGMENTS

We are grateful to the Department of Pediatrics and Child Health of, School of Medicine, College of Health Sciences at Addis Ababa University for facilitating the arrangements for this study.

Our sincere and deepest gratitude and appreciation goes to the study participants for their willingness, patience and cooperation throughout the data collection period as well as for the data collectors for their invaluable contributions in collecting the data. We are also grateful to the staff of the hospital, particularly those working at the renal followup Clinic.

Competing Interest:

The authors declare that this manuscript was approved by all authors in its current form and that there are no competing interests to declare.

Wang C, Greenbaum LA, Wang C, shi, Greenbaum LA. Nephrotic Syndrome. Pediatr Clin North Am. 2019;66(1):73–85.
Gipson DS, Massengill SF, Yao L, Nagaraj S, Smoyer WE, Mahan JD, et al. Management of childhood onset nephrotic syndrome. Pediatrics. 2009;124(2):747–57.
Gordillo R, Spitzer A. The nephrotic syndrome. Pediatr Rev. 2009;30(3):94–105.
Eddy AA, Symons JM. Nephrotic syndrome in childhood. Lancet. 2003;362(9384):629-.
Mola K, Shimelis D. Pattern And Outcome Of Renal Diseases In Hospitalized Children In Tikur Anbessa Specialized Teaching Hospital, Addis Ababa,Ethiopia. Ethiop Med J. 2016;54(3):117–23.
Roccella M, Leggio L, Parisi L, Turdo G, Testa D. The quality of life in developing age subjects with chronic renal diseases. Minerva Pediatr. 2005;57(3):119–28.
United States Renal Data System. Medicare Expenditures for Persons With ESRD. USRDS Annual Data Report. 2016;25(2):277–82.
Selewski DT, Troost JP, Massengill SF, Gbadegesin RA, Greenbaum LA, Shatat IF, 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(9):1467–76.
Zyada F, Elbatrawy A, Khalifa D, Waly SG, Mouawad EM, Ahmed D. Psychosocial aspects of nephrotic syndrome among children and their caregivers. Middle East Current Psychiatry. 2013;20(3):164–71.
N P, AG FA, N.A. DC. Nephrotic syndrome and behavior in children. Int J Nephrol. 2017; 2017: 154–161.
Mishra K, Ramachandran S, Firdaus S, Rath B. The impact of pediatric nephrotic syndrome on parents’ health-related quality of life and family functioning: an assessment made by the PedsQL 4.0 family impact module. Saudi J Kidney Dis Transpl. 2015;26(2):285–92.
Srivastava RN, Mayekar G, Anand R, Choudhry VP, Ghai OP, Tandon HD. Nephrotic syndrome in Indian children. Arch Dis Child. 1975;50(8):626–30.
Reshi A, Bhat M, Najar M, Banday K, Naik M, Singh D, et al. Etiological profile of nephrotic syndrome in Kashmir. Indian J Nephrol. 2008;18(1):9–12.
Yao Doe J, Funk M, Mengel M, Doehring E, Ehrich JHH. Nephrotic syndrome in African children: Lack of evidence for “tropical nephrotic syndrome”? Nephrol Dialysis Transplantation. 2006;21(3):672–6.
Nandlal L, Naicker T, Bhimma R. Nephrotic Syndrome in South African Children: Changing Perspectives in the New Millennium. Kidney Int Rep. 2019;4(4):522–34.
Olowu WA, Ademola A, Ajite AB, Saad YM. Childhood nephrotic syndrome in tropical Africa: Then and now. Paediatr Int Child Health. 2017;37(4):259–68.
Park SJ, Shin J, Il. Complications of nephrotic syndrome. Korean J Pediatr. 2011;54(8):322–8.
Gipson DS, Selewski DT, Massengill SF, Wickman L, Messer KL, Herreshoff E, et al. Gaining the PROMIS perspective from children with nephrotic syndrome: A Midwest pediatric nephrology consortium study. Health Qual Life Outcomes. 2013;11(1):11–30.
Rüth EM, Landolt MA, Neuhaus TJ, Kemper MJ. Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome. J Pediatr. 2004;145(6):778–83.
Lambe T, Frew E, Ives NJ, Woolley RL, Cummins C, Brettell EA, et al. Mapping the Paediatric Quality of Life Inventory (PedsQLTM) Generic Core Scales onto the Child Health Utility Index–9 Dimension (CHU-9D) Score for Economic Evaluation in Children. PharmacoEconomics.2018; 36(3}: 451–465.
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(3):593–8.
Guha P, De A, Ghosal M. Behavior profile of children with nephrotic syndrome. Indian J Psychiatry. 2009;51(2):122–6.
Varni JW, Seid M, Rode CA. The PedsQLTM: Measurement model for the pediatric quality of life inventory. Med Care. 1999;37(2):126–39.
Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: Reliability and Validity of the Pediatric Quality of Life InventoryTM Version 4.0 Generic Core Scales in Healthy and Patient Populations. Med Care. 2001;39(8):81.
Rita Mbanefo N, Israel Odetunde O, Uchenna Okafor H, Oguonu Anthony Nnaemaka Ikefuna T, Ubesie AC, Iloh KK, et al. Archives of Nephrology V1. I1. Arch Nephrol [Internet]. 2018;1(1):11–8. Available from: https://www.sryahwapublications.com/archives-of-nephrology/pdf/v1-i1/2.pdf.
Youssef DM, Abdelsalam MM, Abozeid AM, Youssef UM. Assessment of Behavior Abnormalities of Corticosteroids in Children with Nephrotic Syndrome. ISRN Psychiatry [Internet]. 2013;2013:1–6. Available from: https://www.hindawi.com/archive/2013/921253/.
Gupta M, Nanda S, Kaushik JS. Quality of life in symptomatic HIV infected children. Indian Pediatr. 2013.
Roussel A, Delbet JD, Micheland L, Deschênes G, Decramer S, Ulinski T. Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission—A cross-sectional study. Acta Paediatr Int J Paediatr. 2019;108(12):2267–73.
Soliday E, Kool E, Lande MB. Psychosocial adjustment in children with kidney disease. J Pediatr Psychol. 2000;25(2):93–103.
Mitra S, Banerjee S. The impact of pediatric nephrotic syndrome on families. Pediatr Nephrol. 2011.
Mishra K, Ramachandran S, Firdaus S, Rath B. The impact of pediatric nephrotic syndrome on parents’ health-related quality of life and family functioning: an assessment made by the PedsQL 4.0 family impact module. Saudi J Kidney Dis Transpl. 2015;26(2):285–92.

No competing interests reported.

Download PDF

Version 1

posted

You are reading this latest preprint version

Assessment Of Health Related Quality Of Life Of Children With Nephrotic Syndrome and Their Care Takers At A Tertiary Hospital In Addis Ababa, Ethiopia

Status:

Version 1

Abstract

Figures

Introduction

Materials And Methods

Study setting:

Study design:

Sample size and sampling:

Data collection:

Data processing and analysis:

Ethical clearance:

Results

Socio-demographic characteristics

Clinical and laboratory Characteristics

Correlation among Child health related quality of life (Child HRQoL) tool parameters

Correlation among Family related quality of life (Family HRQoL) tool parameters

Factors associated with poor Child HRQoL

Factors associated with poor Family health related quality of life (Family HRQoL)

Discussion

Limitation of the study:

Conclusion

Declarations

References

Additional Declarations

Status:

Version 1