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Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

Family impact and economic burden among caregivers of children with chronic kidney disease in... Background: Chronic disease greatly increases children’s dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease. Thus, chronic kidney disease (CKD) presents a burden for children and their families that last throughout life in different aspects. This study aimed to assess family impact and economic burden of chronic kidney disease (CKD) in children on their families. Methods: A cross-sectional study was carried out on 250 caregivers of children with CKD attending tertiary care hospital/health insurance clinics in Assiut, Egypt using PedsQL™ family impact module (FIM) for assessing family impact and economic burden between January and May 2018. Results: Seventy six percent of caregivers shared paying for treatment with health insurance while 14% paid the total expenses out of their pockets. Although the majority (87.2%) of caregivers suffered different degrees of financial hardship, more than 60% of them had no coping strategy. The regression module showed that responding caregiver, degree of financial hardship, treatment modality, and socioeconomic class were significant predictors of total FIM (β = 0.38, P < 0.001; β = 0.28, P < 0.001; β = 0.22, P < 0.001; β = 0.13, P = 0.006 respectively). Conclusion: Most caregivers were involved in paying for treatment of their children either totally or sharing with health insurance and suffered different degrees of financial hardship. Mothers, caregivers with great financial hardship, and caregivers of children on dialysis had the lowest scores of PedsQL™ FIM. There is a high need for expansion of health insurance umbrella to reduce financial hardship together with continued multidimensional support to families. Keywords: Pediatric, Chronic renal disease, Financial impact, Caregivers 1 Introduction important role in the child’s adaptation and coping with Childhood chronic diseases usually affect family function- his/her chronic disease. Therefore, children’shealth- ing. Chronic disease greatly increases children’s depend- related quality of life (HRQoL) assessments need to be ency on parents/caregivers (usually mothers) as they face supplemented with family functioning assessments [2]. new problems associated with caring for a child with The assessment of family impact of chronic childhood chronic disease [1]. Furthermore, family plays an illness is extremely useful to identify the need for family education, psychological intervention, and social sup- port. This assessment is also important for health care * Correspondence: manaldarwish@aun.edu.eg; manaldarwish@hotmail.com professionals and policy makers to improve the HRQoL Public Health and Community Medicine Department, Faculty of Medicine, of children and their caregivers [3]. Assiut University, Assiut, Egypt Full list of author information is available at the end of the article One of the most chronic diseases which can affect the quality of life (QoL) of children and their families is © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 2 of 8 chronic kidney disease (CKD) [4]. Caring for those chil- 2.3 Sample size and sampling technique dren places significant economic stress on caregivers: The sample size was calculated using OpenEpi, Version health care costs, disruption to work, travel expenses, 3, open source calculator—SSPropor with a population and out-of- pocket payments. Financial stress experi- size of 1000 and expected frequency of financial hard- enced by caregivers contributes to their ability to provide ship in affected families of 28% [10]; the calculated sam- care for their children and affect parent’s QoL [5]. ple size was 237 at 95% confidence level. The Most of the previous studies evaluated the impact and researchers increased the number to 250 to safeguard quality of life for caregivers of children with other against incomplete and missing data. chronic diseases such as type 1 diabetes [6], chronic gastrointestinal disorders [2], chronic pain [7], sickle cell – The sample included all end-stage renal disease disease [8], disabilities [9], asthma, and heart disease [3]. (ESRD) cases (36 cases) registered in the dialysis unit Studies that correlate between the degree of financial in the Children University Hospital which is the only hardship and QoL of caregivers of children with CKD in unit for all children with ESRD requiring dialysis. Egypt could not be traced after careful searching. – For children on conservative treatment (214 cases), After careful searching, no studies that investigated a systematic random sample from eligible attendants the correlation of the degree of financial hardship and was selected and a proportional allocation based on QoL of caregivers of children with CKD in Egypt were the days of work of the 2 clinics resulted in 169 traced. This study aims to determine the family impact cases from Assiut University Children Hospital and of pediatric CKD (physical, psychological, and social) 45 cases from the health insurance clinic. and to assess the economic burden of children with CKD on their families. 2.4 Data collection and tools Data were collected through personal interviews with caregivers of eligible children (mainly the mothers). Four 2 Methods tools were used in the study. 2.1 Study design, setting, and population Tool I: A questionnaire to collect demographic and A cross-sectional study was conducted at two sites: clinical data which include name, age, sex, residence, health insurance clinic and Assiut University Children educational level, work status of mother, socioeconomic Hospital (nephrology outpatient clinic, nephrology de- class, and data about CKD (family history, duration, partment, and dialysis unit) in Assiut city, Upper Egypt, stage, and treatment modality). between January and May 2018. Tool II: Family Socio-economic Scale, revised version The university hospital with its all levels staff carders 2010 [11]. It assesses the socioeconomic status of the (about 65 personnel) provides care for 450 inpatients (36 family and consists of 4 dimensions, parents’ level of with ESRD receiving dialysis and 414 on conservative education (8 items), parents’ occupation (2 items), total treatment) and an approximately 20 outpatients/day suf- family monthly income (6 items), and lifestyle of the fering from both acute and chronic kidney problems family (12 items). The item of income was modified ac- (chronic is our target). All the recommended battery of cording to the rate of inflation [12] (details in Additional services—except kidney transplantation which is offered at file 1). Abu El-Reesh children Hospital (Cairo University)—is Tool III: Assessment of the impact of pediatric CKD provided and payment for the services is via health insur- on families using the Arabic version of the PedsQL™ ance, government expenses, out of pocket, or mixed, family impact module (FIM) version 2 which is com- whereas health insurance clinic with less staffing (3 posed of 36 items in 8 dimensions including physical personnel) works only 2 days a week and provides only function (6 items), emotional function (5 items), so- conservative treatment (dialysis cases are referred to the cial function (4 items), cognitive function (5 items), university hospital) to approximately 25–30 patients/week. communication (3 items), worry (5 items), daily activ- All medical treatments provided in this clinic is paid via ities (3 items), and family relationships (5 items). It is health insurance. a 5-point rating Likert scale ranging from “never” to “almost always” as follows: 0 if it is never a problem and 4 if it is almost always a problem. Items were 2.2 Inclusion criteria then reverse-scored and linearly transformed to a 0– The inclusion criteria are as follows: any caregiver of 100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) so child (8 to ≤ 18 years) diagnosed with CKD who agreed that higher scores indicate better functioning (less to participate in the study and receive any management negative impact) [13] (details in Additional file 2). modality (renal replacement therapy, conservative treat- The FIM yields 3 “mean” summary scores = sum of ment, dialysis or kidney transplantation). the items over the number of items answered. The Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 3 of 8 mean of total score is the sum of all 36 items divided 2.6 Ethical considerations by the number of items answered. The Parent The study protocol was approved by the ethical review HRQoL Summary Score (20 items) in the physical, board of the Faculty of Medicine, Assiut University emotional, social, and cognitive functioning scales. (Reference # IRB00008718). The aim of the study was The Family Functioning Summary Score (8 items) is explained to caregivers before starting the data computed as the sum of the items divided by the collection. Voluntary participation of caregivers of the number of items answered in the daily activities and child was assured. Verbal informed consent was family relationships scales [14] (details in Additional obtained from both caregivers and children before file 3). The PedsQL™ FIM demonstrated accepted reli- participating in the study (verbal consenting process was ability in all summary and scale scores as evidenced accepted by the ethical review board of the Faculty of by Cronbach’s alpha coefficients greater than 0.8 [8]. Medicine, Assiut University, due to the high prevalence Overall, the FIM was found to demonstrate excellent in- of low education levels, especially in rural areas, the ternal consistency and criterion validity within a commu- prevailing culture of fear of signing any document, and nity sample in both total and summary scales [15]. the nature of research, which is not interventional, only The PedsQL™ FIM (Arabic version) showed excellent questionnaire-based). Privacy and confidentiality of all internal consistency reliability for the total PedsQL™ data was assured. Family Impact Scale as well as its subscales. Cronbach’s alpha score was above 0.93 for the total PedsQL™ Family 2.7 Data management and statistical analysis Impact Scale [16]. Data entry, cleaning, analysis, and recoding (if needed) Tool IV: Assessment of economic burden on family was done using the Statistical Package for Social Science using a questionnaire including the following items: fi- (SPSS Inc., Chicago, IL, USA) version 20 [22]. nancial hardship, work disruptions, search for an add- Descriptive statistics were calculated as the mean and itional job, coping strategies, travel expenses, and type of SD for continuous variables and as frequency and payment for treatment [10–18]. percentages for categorical variables. Chi-squared (χ ) and Fisher’s exact tests were used as the tests of signifi- 2.5 Operational definitions cance for categorical variables. One-way ANOVA test was used for the three or more group comparison of – Socioeconomic status (SES) refers to the level of the continuous variables and the Student t test for the two social and economic position of an individual within groups. Multivariate linear regression analysis was used the society as reflected by various indicators. These to identify the different predictors of family-functioning include income, education, occupation, place of scores. The odds ratio was calculated as a measure of as- residence, access to basic services, and the sociation at 95% confidence limit, and statistical signifi- availability of infrastructure, among others [19]. cance level was considered when P value ≤ 0.05 for all – Severity (staging) of CKD: Children with CKD were statistical tests. classified according to the glomerular filtration rate (eGFR) using the Updated Bedside Schwartz formula as 3 Results follows: Table 1 shows the sociodemographic and clinical characteristics of the sample children with CKD. The eGFR (ml/min per 1.73 m ) = 41.3 × (height/Scr) mean age of the children with CKD was 11.9 ± 3.1 years. where height is in meters and Scr (serum creatinine) is Males represented approximately two thirds of the study in mg/dl [20]. sample (67.2%). The duration of CKD exceeded 5 years in 36% and most of children in the study (85.6%) – According to the eGFR, children with CKD were received conservative treatment while 14.4% were on classified as follows [21]: regular hemodialysis. Regarding CKD severity, about half of the studied children (50.2%) were in stage 5 and 26.6% were in stage one of CKD. Stage GFR (ml/min/1.73m ) Terms Table 2 shows that most caregivers (76%) paid for Stage 1 > 90 Normal or high treatment through both health insurance and out-of- Stage 2 60–89 Mildly decreased pocket, 14% were obliged to pay for treatment from their Stage 3a 45–59 Mildly to moderately decreased out-of-pocket, 6.8% paid totally by health insurance, and only 3.2% of children were treated on the government Stage 3b 30–44 Moderately to severed decreased expense via ministerial decrees. Most caregivers of the Stage 4 15–29 Severely decreased studied children with CKD (60%) reported having great Stage 5 < 15 Kidney failure financial hardship because of CKD of their children, and Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 4 of 8 Table 1 Sociodemographic and clinical characteristics of hardship, and treatment modality where mothers, those children with CKD, Assiut, Upper Egypt, 2018 with high financial hardship, and children on dialysis Variables Number (250) Percentage (%) had the lowest scores. Also, those with low SES had significantly lower scores in both parental HRQoL and Age total FIM while disease duration and CKD stage had no Mean ± SD (range) 11.9 ± 3.1 (8–18) significant effects. Caregivers of children with stage 5 of Sex CKD reported the lowest scores compared with Male 168 67.2 caregivers of children in other stages of CKD. Female 82 32.8 Table 5 shows the linear regression module for the Residence predictors of the total PedsQL™ FIM score. The variables of: responding caregiver (P < 0.001, CI = 4–7.1), degree Urban 38 15.2 of financial hardship (P < 0.001, CI = 3.5–8.1), treatment Rural 212 84.8 modality (P < 0.001, CI = 8.6–22.4), and socioeconomic Education level class (P = 0.001, CI = 2.8–10.4) were significantly No schooling 10 4.0 associated with the total PedsQL™ FIM score, while Primary 144 57.6 there was no significant difference with the stage of Preparatory 65 26 CKD. About 42% of the variations in the total impact score were explained by these explanatory variables (R Secondary 31 12.4 = 0.420): fathers and brothers (as caregivers of the sick Mother’s working status child), caregivers suffering no or little financial hardship, Housewife 236 94.4 caregivers of children on conservative treatment, and Working mother 14 5.6 those from high socioeconomic class got higher Socioeconomic level PedsQL™ FIM scores. Low 42 16.8 4 Discussion Middle 164 65.6 Because most patients with CKD especially children need High 44 17.6 comprehensive support and care, their caregivers feel Duration of CKD more physical, psychological, and financial stress. ≤ 5 years 158 63.2 Unfortunately, few studies have been conducted to > 5 years 92 36.8 measure the QoL of caregivers of children with CKD [23]. Treatment modality Our results showed that work disruption occurred in only 8% of caregivers, as the primary caregiver is Conservative 214 85.6 usually the mother and 94% of mothers in our study Dialysis 36 14.4 were housewives. Also, only 14% of caregivers sought Stage of CKD N = (222) an additional job, which can be attributed to Stage 1 59 26.6 unavailability of jobs, especially part-time jobs. Fur- Stage 2 20 9 thermore, most caregivers in our study were illiterate Stage 3 15 6.8 and of lower educational levels, which make their chances of finding jobs low. Two previous studies Stage 4 16 7.2 show that caregivers of children with ESRD were un- Stage 5 112 50.4 employed and financially supported by another mem- Stage of CKD: total = 222 (28 children had no available kidney function tests) ber of the family [24, 25]. In our study, more than one third of caregivers only 12.8% had no financial hardship. The main coping reported need to travel to another governorate to receive strategies used by caregivers were sold property (21.1%) medical care for their children and some of them were followed by taking out a loan (11.5%). obliged to pay for long time accommodation. In most Table 3 shows that the mean score of the total cases, travel was primarily for kidney biopsy, consulting PedsQL™ FIM was 51.9 ± 22.2, the parent HRQoL another nephrologist or for renal transplantation. This summary score was 48.7 ± 25.2, and the family summary was in agreement with caregivers of children with cancer score was 72.7 ± 27.01. The worry score was the least, who reported need for extra payment for travel, lodging, while the highest was the family relationships. and meals away from home as reported by Miedema Table 4 shows that there were statistically significant et al. [18]. differences in parental HRQoL, family summary, and Regarding the method of payment, a small percentage total FIM by responding caregiver, degree of financial (6.8%) of caregivers were completely covered by health Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 5 of 8 Table 2 Economic impact of CKD on families of affected Table 3 PedsQL™ Family Impact Score in caregivers of children, children, Assiut, Upper Egypt, 2018 with CKD Assiut, Upper Egypt, 2018 Characteristics Number Percentage Scale Mean ± SD (250) (%) Physical 51.1 ± 32.5 Type of payment for treatment Emotional 42.1 ± 26.2 Health insurance 17 6.8 Social 61.2 ± 36.2 Out-of-pocket 35 14 Cognitive 42.8 ± 31.5 Both health insurance and out-of- 190 76 Communication 52.3 ± 32.5 pocket Worry 24.4 ± 21.3 Treatment on government expense 8 3.2 Daily activities 69.1 ± 34.2 Work disruptions Family relationships 74.5 ± 30.6 Yes 20 8 Parent HRQoL summary score 48.8 ± 25.2 No 230 92 Family summary score 72.7 ± 27 Need for additional job by a family member Total score 51.9 ± 22.2 Yes 35 14 No 215 86 also the limited facilities and services available for Need to travel to another diseased children and their caregivers. In addition, this governorate may relate directly to the fact that most of the burden is Yes 98 39.2 falling on mothers (50.4%). No 152 60.8 The total PedsQL™ FIM and parental HRQoL of Accommodation expenses caregivers of children with CKD was lower in our Yes 70 28 population compared with other studies of caregivers of No 180 72 children with other chronic diseases (asthma [26], osteogenesis imperfecta [27], sickle cell disease [8], Degree of financial hardship asthma and heart diseases [3], chronic gastrointestinal No 32 12.8 disorders [2], chronic pain [7], nephrotic syndrome [28], Little 19 7.6 disabilities [29], and different chronic conditions [15]). Moderate 49 19.6 Notably, the lowest score in our study was the worry Great 150 60 function. This may be due to the nature of CKD and Coping strategies N = (218) its anticipated progression to ESRD and related premature mortality, in addition to worry about the None 137 62.8 efficacy, side effects of treatment, and comorbidities Sold property 46 21.1 associated with CKD. This was consistent with results Took out a loan 25 11.5 of studies in caregivers of children with nephrotic Forego making a big purchase 6 2.8 syndrome, one of the major causes of CKD in our Fundraising 4 1.8 children, who also reported the lowest score in worry The total number was 218 because 32 caregivers had no hardship function [28, 30]. On the other hand, the highest score in our study was in the family relationships (74.5 ± 30.6). This may be insurance and only 3.2% of children were treated on due to the way the Egyptians react in coping with government expense by a ministerial decree while about chronic disease, especially in children, as family three quarters (76%) shared paying treatment through cooperation and cohesion is a common feature in facing both health insurance and out-of-pocket. The remaining difficulties. However, it was not possible to establish 14% had to pay for treatment out-of-pocket. This is be- whether these positive family relationships were found cause health insurance covers the cost of some drugs before the diagnosis of CKD or not. and investigations; the family must cover the rest of Compared to fathers and brothers, mothers and sisters medical treatment from out-of-pocket. The total FIM of children with CKD reported significantly lower scores and parental HRQoL scores were more severely im- in total FIM, parental HRQoL, and family summary paired than family functioning. scores. This is because mothers usually carry a Lower scores in most of the scales in this study reflect disproportionate number of parenting demands (such as the inability of caregivers to deal with the different monitoring the child’s compliance to treatment, follow- stressors due to caring for their diseased children and up visits, hospitalization, diet, and fluid requirements) Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 6 of 8 Table 4 Mean scores of PedsQL™ Family Impact Module in Table 5 Predictors of total PedsQL™ Family Impact Module caregivers of CKD children, Assiut, Upper Egypt, 2018 score in parents of CKD children, Assiut, Upper Egypt, 2018 Parental HRQoL Family summary Total FIM Variable Beta t Sig. 95% CI Mean ± SD Mean ± SD Mean ± SD Responding caregiver 0.38 7 < 0.001 4–7.1 Caregiver Degree of financial hardship 0.27 4.9 < 0.001 3.5–8.1 Mother 37.4 ± 22.6 63.9 ± 28.8 41.9 ± 20.3 Treatment modality 0.26 4.4 < 0.001 8.6–22.4 Father 61.4 ± 19.3 86.4 ± 15.2 62.9 ± 15.7 Socioeconomic level 0.18 3.4 0.001 2.8–10.4 Brother 59.9 ± 26.4 76.5 ± 27.6 62.5 ± 24.4 Stage of CKD 0.04 0.6 0.51 0.9–1.9 Sister 47.4 ± 29.1 55.8 ± 28.5 47.9 ± 24.8 Constant 6.2 < 0.001 21.5–41.4 F value 17.5 12.5 19 R square 0.420 P value < 0.001* < 0.001* < 0.001* Simple linear regression analysis Degree of financial hardship No 66.2 ± 18.6 82.5 ± 24.1 66.9 ± 17.9 and lifestyle disruptions (such as absence from work or Little 64.1 ± 23.7 86.7 ± 19.9 59.6 ± 17.2 quitting job). In addition, mothers are responsible for Moderate 58.3 ± 20.7 58.3 ± 20.7 59.6 ± 17.2 the daily care of other family members along with their High 39.9 ± 24 66.5 ± 28.7 44.5 ± 21.3 ill child’s health and functioning. Our findings were F value 29.5 10.9 27.2 similar to those reported in other populations where P value < 0.001* < 0.001* < 0.001* mothers of children with chronic pain, cancer, and dis- abilities reported significantly worse total FIM, parent Treatment modality HRQoL, and family summary scores than fathers [7, 29, Conservative 52.4 ± 24.1 78.1 ± 22 55.4 ± 20.6 31]. Our findings are also supported by another research Hemodialysis 27.2 ± 20.4 40.6 ± 31.8 31.8 ± 20.8 using the Ulm Quality of Life Inventory for parents, in T value 5.9 8.8 6.4 which mothers of CKD children achieved significantly P value < 0.001* < 0.001* <0.001* lower total, physical, emotional, and daily functioning Socioeconomic level than fathers [32]. There were statistically significant differences in the Low 40.5 ± 25.6 63.4 ± 29.6 43.8 ± 23.1 PedsQL™ FIM scores in all domains of QoL by the Middle 48.9 ± 24.9 48.9 ± 24.9 52.8 ± 21.6 degree of financial hardship where caregivers who suffer High 55.6 ± 23.8 77.7 ± 24.6 56.8 ± 21.9 from great financial hardship due to their children CKD F value 3.9 2.6 4.1 acquired the least score in all domains of FIM. As a P value 0.02* 0.07 0.01* result of poverty and working mainly in low-paying jobs Duration of CKD (67.6% of fathers work in simple and non-technical pro- fessions while 94% of mothers were not working for ≤ 5 years 46.4 ± 25.1 71 ± 28.6 71 ± 28.6 cash), caregivers of children with CKD in our study tend > 5 years 52.6 ± 25 75.5 ± 23.9 55.3 ± 21.9 to achieve lower QoL scores with increase in financial t value 1.9 1.3 1.8 hardship. P value 0.06 0.2 0.07 Regarding treatment modality, our study revealed that Stage of CKD there were statistically significant differences between Stage 1 47.2 ± 27.2 77.1 ± 20.9 52.4 ± 22.4 conservative and dialysis groups in all domains of PedsQL™ FIM, except for communication and worry Stage 2 61.5 ± 21.9 75.9 ± 31.6 62.3 ± 22 domains. In all domains, caregivers of children who Stage 3 46.5 ± 25.7 80.8 ± 17.6 49.3 ± 23.6 received conservative treatment achieved higher scores Stage 4 51.3 ± 20.6 84.9 ± 13.2 54.9 ± 16.1 than caregivers of children on hemodialysis. This can be Stage 5 45.6 ± 24.8 65.5 ± 31.2 48.5 ± 22.1 explained by the burden of hemodialysis sessions (three F value 1.9 2.4 1.89 times weekly and each session lasts about 3–4 h), P value 0.12 0.052 0.11 transportation from remote areas, restriction of activities, work disruption, cost of dialysis and other ANOVA test (post hoc) was used Independent sample t test was used medications plus psychological upset and worry about *Significant complications of the invasive dialysis-related procedures. A study in Germany using the Ulm Quality of Life In- ventory for Parents (ULQIE) showed that parents of children undergoing dialysis also reported the lowest Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 7 of 8 scores on all scales, whereas parents of children under- 6 Supplementary information Supplementary information accompanies this paper at https://doi.org/10. going conservative treatment reached the higher HRQoL 1186/s42506-020-00058-7. scores [32]. Though not reaching the level of significance, Additional file 1. caregivers of children with CKD duration > 5 years Additional file 2. reported higher scores in parental HRQoL family Additional file 3. summary than those of children with CKD duration ≤ 5 years. This phenomenon is called “response shift” which means that with passage of time caregivers learned how Abbreviations CKD: Chronic kidney disease; ESRD: End-stage renal disease; FIM: Family to cope with and adjust to their child illness and thus impact module; eGFR: Glomerular filtration rate; HRQoL: Health-related report better QoL [33]. In contrast to our results, a quality of life; PedsQL™ FIM: Pediatric quality of life™ family impact module; study of family impact of children with ESRD revealed QoL: Quality of life; SPSS: Statistical Package for Social Science; ULQIE: Ulm Quality of Life Inventory for Parents higher scores of the PedsQL™ FIM with short duration (< 5 years) than longer duration (≥ 5 years) [23]. This result suggests that a longer duration of ESRD can Acknowledgements The authors express their gratitude to caregivers and children with CKD who impose additional burden on parents or caregivers participated in the study. especially when their children reach end-stage of the disease. Authors’ contributions Similarly, there were statistically significant differences MD and TI suggested the research idea, designed the work, prepared the in the total PedsQL™ FIM and parent HRQoL scores by study protocol, and revised the manuscript. TI calculated the sample size. SH social class where caregivers from the higher requested the tools, collected the data, participated in the analysis and interpretation of the results, and wrote the draft of the manuscripts. ST socioeconomic level reported higher scores in all domains participated in the data collection and clinical interpretation of results and than those in the middle and low socioeconomic level. discussion. HA supervised the whole work, especially the interpretation of Thus, with improvement in socioeconomic conditions, data. All authors have read the manuscript and approved the submitted version and agreed corresponding author is MD caregivers tend to adjust better to their children CKD and so achieve higher QoL scores. Funding This research did not receive any funding from any agency in the public, 4.1 Strengths and limitation of the study commercial, or not-for-profit sectors. To our knowledge, this study is the first to use PedsQL™ Family Impact Module to study the family impact of Availability of data and materials CKD in children in all stages of CKD not only ESRD Datasets used in the current study are available from the corresponding author on reasonable request. [23]. However, this study has some limitations: caregivers were recruited in the study during a routine follow-up visit or after hemodialysis sessions and there- Ethics approval and consent to participate The study was approved by the Ethics Review Committee of Assiut Faculty fore the reported scores are not in direct response to of Medicine (reference # IRB00008718). Verbal informed consent was disease exacerbation. Research will be required to assess obtained from both caregivers and children before participating in the study the short-term impact of such events on caregivers. An- (verbal consenting process was accepted by the ethical review board of the Faculty of Medicine, Assiut University, due to the high prevalence of low other limitation is the absence of a control group due to education levels, especially in rural areas, the prevailing culture of fear of cross sectional nature of the study. However, the QoL signing any document, and the nature of research that is not interventional, scores of parents of children with CKD were lower than only questionnaire-based). For illiterate persons, we used the awareness methods where adequate information was given to potential participants, caregivers of healthy children. available family members, and health care team in the study sites. Consent from legally authorized representatives (service provision; doctor or nurse or other literate family member) of participants was taken in case of illiterate 5 Conclusion participants. Most caregivers were involved in paying for treatment of their children either totally or sharing with the health Consent for publication insurance and suffered different degrees of financial Not applicable. hardship. Significant predictors of the Total FIM were the responding caregiver, degree of financial hardship, Competing interests treatment modality, and socioeconomic class. 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Nephrology. 2018;23(8):764–70. 24. Didsbury M, van Zwieten A, Chen K, James L, Francis A, Kim S, et al. The association between socioeconomic disadvantage and parent-rated health http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Journal of the Egyptian Public Health Association Springer Journals

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

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10.1186/s42506-020-00058-7
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Abstract

Background: Chronic disease greatly increases children’s dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease. Thus, chronic kidney disease (CKD) presents a burden for children and their families that last throughout life in different aspects. This study aimed to assess family impact and economic burden of chronic kidney disease (CKD) in children on their families. Methods: A cross-sectional study was carried out on 250 caregivers of children with CKD attending tertiary care hospital/health insurance clinics in Assiut, Egypt using PedsQL™ family impact module (FIM) for assessing family impact and economic burden between January and May 2018. Results: Seventy six percent of caregivers shared paying for treatment with health insurance while 14% paid the total expenses out of their pockets. Although the majority (87.2%) of caregivers suffered different degrees of financial hardship, more than 60% of them had no coping strategy. The regression module showed that responding caregiver, degree of financial hardship, treatment modality, and socioeconomic class were significant predictors of total FIM (β = 0.38, P < 0.001; β = 0.28, P < 0.001; β = 0.22, P < 0.001; β = 0.13, P = 0.006 respectively). Conclusion: Most caregivers were involved in paying for treatment of their children either totally or sharing with health insurance and suffered different degrees of financial hardship. Mothers, caregivers with great financial hardship, and caregivers of children on dialysis had the lowest scores of PedsQL™ FIM. There is a high need for expansion of health insurance umbrella to reduce financial hardship together with continued multidimensional support to families. Keywords: Pediatric, Chronic renal disease, Financial impact, Caregivers 1 Introduction important role in the child’s adaptation and coping with Childhood chronic diseases usually affect family function- his/her chronic disease. Therefore, children’shealth- ing. Chronic disease greatly increases children’s depend- related quality of life (HRQoL) assessments need to be ency on parents/caregivers (usually mothers) as they face supplemented with family functioning assessments [2]. new problems associated with caring for a child with The assessment of family impact of chronic childhood chronic disease [1]. Furthermore, family plays an illness is extremely useful to identify the need for family education, psychological intervention, and social sup- port. This assessment is also important for health care * Correspondence: manaldarwish@aun.edu.eg; manaldarwish@hotmail.com professionals and policy makers to improve the HRQoL Public Health and Community Medicine Department, Faculty of Medicine, of children and their caregivers [3]. Assiut University, Assiut, Egypt Full list of author information is available at the end of the article One of the most chronic diseases which can affect the quality of life (QoL) of children and their families is © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 2 of 8 chronic kidney disease (CKD) [4]. Caring for those chil- 2.3 Sample size and sampling technique dren places significant economic stress on caregivers: The sample size was calculated using OpenEpi, Version health care costs, disruption to work, travel expenses, 3, open source calculator—SSPropor with a population and out-of- pocket payments. Financial stress experi- size of 1000 and expected frequency of financial hard- enced by caregivers contributes to their ability to provide ship in affected families of 28% [10]; the calculated sam- care for their children and affect parent’s QoL [5]. ple size was 237 at 95% confidence level. The Most of the previous studies evaluated the impact and researchers increased the number to 250 to safeguard quality of life for caregivers of children with other against incomplete and missing data. chronic diseases such as type 1 diabetes [6], chronic gastrointestinal disorders [2], chronic pain [7], sickle cell – The sample included all end-stage renal disease disease [8], disabilities [9], asthma, and heart disease [3]. (ESRD) cases (36 cases) registered in the dialysis unit Studies that correlate between the degree of financial in the Children University Hospital which is the only hardship and QoL of caregivers of children with CKD in unit for all children with ESRD requiring dialysis. Egypt could not be traced after careful searching. – For children on conservative treatment (214 cases), After careful searching, no studies that investigated a systematic random sample from eligible attendants the correlation of the degree of financial hardship and was selected and a proportional allocation based on QoL of caregivers of children with CKD in Egypt were the days of work of the 2 clinics resulted in 169 traced. This study aims to determine the family impact cases from Assiut University Children Hospital and of pediatric CKD (physical, psychological, and social) 45 cases from the health insurance clinic. and to assess the economic burden of children with CKD on their families. 2.4 Data collection and tools Data were collected through personal interviews with caregivers of eligible children (mainly the mothers). Four 2 Methods tools were used in the study. 2.1 Study design, setting, and population Tool I: A questionnaire to collect demographic and A cross-sectional study was conducted at two sites: clinical data which include name, age, sex, residence, health insurance clinic and Assiut University Children educational level, work status of mother, socioeconomic Hospital (nephrology outpatient clinic, nephrology de- class, and data about CKD (family history, duration, partment, and dialysis unit) in Assiut city, Upper Egypt, stage, and treatment modality). between January and May 2018. Tool II: Family Socio-economic Scale, revised version The university hospital with its all levels staff carders 2010 [11]. It assesses the socioeconomic status of the (about 65 personnel) provides care for 450 inpatients (36 family and consists of 4 dimensions, parents’ level of with ESRD receiving dialysis and 414 on conservative education (8 items), parents’ occupation (2 items), total treatment) and an approximately 20 outpatients/day suf- family monthly income (6 items), and lifestyle of the fering from both acute and chronic kidney problems family (12 items). The item of income was modified ac- (chronic is our target). All the recommended battery of cording to the rate of inflation [12] (details in Additional services—except kidney transplantation which is offered at file 1). Abu El-Reesh children Hospital (Cairo University)—is Tool III: Assessment of the impact of pediatric CKD provided and payment for the services is via health insur- on families using the Arabic version of the PedsQL™ ance, government expenses, out of pocket, or mixed, family impact module (FIM) version 2 which is com- whereas health insurance clinic with less staffing (3 posed of 36 items in 8 dimensions including physical personnel) works only 2 days a week and provides only function (6 items), emotional function (5 items), so- conservative treatment (dialysis cases are referred to the cial function (4 items), cognitive function (5 items), university hospital) to approximately 25–30 patients/week. communication (3 items), worry (5 items), daily activ- All medical treatments provided in this clinic is paid via ities (3 items), and family relationships (5 items). It is health insurance. a 5-point rating Likert scale ranging from “never” to “almost always” as follows: 0 if it is never a problem and 4 if it is almost always a problem. Items were 2.2 Inclusion criteria then reverse-scored and linearly transformed to a 0– The inclusion criteria are as follows: any caregiver of 100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) so child (8 to ≤ 18 years) diagnosed with CKD who agreed that higher scores indicate better functioning (less to participate in the study and receive any management negative impact) [13] (details in Additional file 2). modality (renal replacement therapy, conservative treat- The FIM yields 3 “mean” summary scores = sum of ment, dialysis or kidney transplantation). the items over the number of items answered. The Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 3 of 8 mean of total score is the sum of all 36 items divided 2.6 Ethical considerations by the number of items answered. The Parent The study protocol was approved by the ethical review HRQoL Summary Score (20 items) in the physical, board of the Faculty of Medicine, Assiut University emotional, social, and cognitive functioning scales. (Reference # IRB00008718). The aim of the study was The Family Functioning Summary Score (8 items) is explained to caregivers before starting the data computed as the sum of the items divided by the collection. Voluntary participation of caregivers of the number of items answered in the daily activities and child was assured. Verbal informed consent was family relationships scales [14] (details in Additional obtained from both caregivers and children before file 3). The PedsQL™ FIM demonstrated accepted reli- participating in the study (verbal consenting process was ability in all summary and scale scores as evidenced accepted by the ethical review board of the Faculty of by Cronbach’s alpha coefficients greater than 0.8 [8]. Medicine, Assiut University, due to the high prevalence Overall, the FIM was found to demonstrate excellent in- of low education levels, especially in rural areas, the ternal consistency and criterion validity within a commu- prevailing culture of fear of signing any document, and nity sample in both total and summary scales [15]. the nature of research, which is not interventional, only The PedsQL™ FIM (Arabic version) showed excellent questionnaire-based). Privacy and confidentiality of all internal consistency reliability for the total PedsQL™ data was assured. Family Impact Scale as well as its subscales. Cronbach’s alpha score was above 0.93 for the total PedsQL™ Family 2.7 Data management and statistical analysis Impact Scale [16]. Data entry, cleaning, analysis, and recoding (if needed) Tool IV: Assessment of economic burden on family was done using the Statistical Package for Social Science using a questionnaire including the following items: fi- (SPSS Inc., Chicago, IL, USA) version 20 [22]. nancial hardship, work disruptions, search for an add- Descriptive statistics were calculated as the mean and itional job, coping strategies, travel expenses, and type of SD for continuous variables and as frequency and payment for treatment [10–18]. percentages for categorical variables. Chi-squared (χ ) and Fisher’s exact tests were used as the tests of signifi- 2.5 Operational definitions cance for categorical variables. One-way ANOVA test was used for the three or more group comparison of – Socioeconomic status (SES) refers to the level of the continuous variables and the Student t test for the two social and economic position of an individual within groups. Multivariate linear regression analysis was used the society as reflected by various indicators. These to identify the different predictors of family-functioning include income, education, occupation, place of scores. The odds ratio was calculated as a measure of as- residence, access to basic services, and the sociation at 95% confidence limit, and statistical signifi- availability of infrastructure, among others [19]. cance level was considered when P value ≤ 0.05 for all – Severity (staging) of CKD: Children with CKD were statistical tests. classified according to the glomerular filtration rate (eGFR) using the Updated Bedside Schwartz formula as 3 Results follows: Table 1 shows the sociodemographic and clinical characteristics of the sample children with CKD. The eGFR (ml/min per 1.73 m ) = 41.3 × (height/Scr) mean age of the children with CKD was 11.9 ± 3.1 years. where height is in meters and Scr (serum creatinine) is Males represented approximately two thirds of the study in mg/dl [20]. sample (67.2%). The duration of CKD exceeded 5 years in 36% and most of children in the study (85.6%) – According to the eGFR, children with CKD were received conservative treatment while 14.4% were on classified as follows [21]: regular hemodialysis. Regarding CKD severity, about half of the studied children (50.2%) were in stage 5 and 26.6% were in stage one of CKD. Stage GFR (ml/min/1.73m ) Terms Table 2 shows that most caregivers (76%) paid for Stage 1 > 90 Normal or high treatment through both health insurance and out-of- Stage 2 60–89 Mildly decreased pocket, 14% were obliged to pay for treatment from their Stage 3a 45–59 Mildly to moderately decreased out-of-pocket, 6.8% paid totally by health insurance, and only 3.2% of children were treated on the government Stage 3b 30–44 Moderately to severed decreased expense via ministerial decrees. Most caregivers of the Stage 4 15–29 Severely decreased studied children with CKD (60%) reported having great Stage 5 < 15 Kidney failure financial hardship because of CKD of their children, and Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 4 of 8 Table 1 Sociodemographic and clinical characteristics of hardship, and treatment modality where mothers, those children with CKD, Assiut, Upper Egypt, 2018 with high financial hardship, and children on dialysis Variables Number (250) Percentage (%) had the lowest scores. Also, those with low SES had significantly lower scores in both parental HRQoL and Age total FIM while disease duration and CKD stage had no Mean ± SD (range) 11.9 ± 3.1 (8–18) significant effects. Caregivers of children with stage 5 of Sex CKD reported the lowest scores compared with Male 168 67.2 caregivers of children in other stages of CKD. Female 82 32.8 Table 5 shows the linear regression module for the Residence predictors of the total PedsQL™ FIM score. The variables of: responding caregiver (P < 0.001, CI = 4–7.1), degree Urban 38 15.2 of financial hardship (P < 0.001, CI = 3.5–8.1), treatment Rural 212 84.8 modality (P < 0.001, CI = 8.6–22.4), and socioeconomic Education level class (P = 0.001, CI = 2.8–10.4) were significantly No schooling 10 4.0 associated with the total PedsQL™ FIM score, while Primary 144 57.6 there was no significant difference with the stage of Preparatory 65 26 CKD. About 42% of the variations in the total impact score were explained by these explanatory variables (R Secondary 31 12.4 = 0.420): fathers and brothers (as caregivers of the sick Mother’s working status child), caregivers suffering no or little financial hardship, Housewife 236 94.4 caregivers of children on conservative treatment, and Working mother 14 5.6 those from high socioeconomic class got higher Socioeconomic level PedsQL™ FIM scores. Low 42 16.8 4 Discussion Middle 164 65.6 Because most patients with CKD especially children need High 44 17.6 comprehensive support and care, their caregivers feel Duration of CKD more physical, psychological, and financial stress. ≤ 5 years 158 63.2 Unfortunately, few studies have been conducted to > 5 years 92 36.8 measure the QoL of caregivers of children with CKD [23]. Treatment modality Our results showed that work disruption occurred in only 8% of caregivers, as the primary caregiver is Conservative 214 85.6 usually the mother and 94% of mothers in our study Dialysis 36 14.4 were housewives. Also, only 14% of caregivers sought Stage of CKD N = (222) an additional job, which can be attributed to Stage 1 59 26.6 unavailability of jobs, especially part-time jobs. Fur- Stage 2 20 9 thermore, most caregivers in our study were illiterate Stage 3 15 6.8 and of lower educational levels, which make their chances of finding jobs low. Two previous studies Stage 4 16 7.2 show that caregivers of children with ESRD were un- Stage 5 112 50.4 employed and financially supported by another mem- Stage of CKD: total = 222 (28 children had no available kidney function tests) ber of the family [24, 25]. In our study, more than one third of caregivers only 12.8% had no financial hardship. The main coping reported need to travel to another governorate to receive strategies used by caregivers were sold property (21.1%) medical care for their children and some of them were followed by taking out a loan (11.5%). obliged to pay for long time accommodation. In most Table 3 shows that the mean score of the total cases, travel was primarily for kidney biopsy, consulting PedsQL™ FIM was 51.9 ± 22.2, the parent HRQoL another nephrologist or for renal transplantation. This summary score was 48.7 ± 25.2, and the family summary was in agreement with caregivers of children with cancer score was 72.7 ± 27.01. The worry score was the least, who reported need for extra payment for travel, lodging, while the highest was the family relationships. and meals away from home as reported by Miedema Table 4 shows that there were statistically significant et al. [18]. differences in parental HRQoL, family summary, and Regarding the method of payment, a small percentage total FIM by responding caregiver, degree of financial (6.8%) of caregivers were completely covered by health Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 5 of 8 Table 2 Economic impact of CKD on families of affected Table 3 PedsQL™ Family Impact Score in caregivers of children, children, Assiut, Upper Egypt, 2018 with CKD Assiut, Upper Egypt, 2018 Characteristics Number Percentage Scale Mean ± SD (250) (%) Physical 51.1 ± 32.5 Type of payment for treatment Emotional 42.1 ± 26.2 Health insurance 17 6.8 Social 61.2 ± 36.2 Out-of-pocket 35 14 Cognitive 42.8 ± 31.5 Both health insurance and out-of- 190 76 Communication 52.3 ± 32.5 pocket Worry 24.4 ± 21.3 Treatment on government expense 8 3.2 Daily activities 69.1 ± 34.2 Work disruptions Family relationships 74.5 ± 30.6 Yes 20 8 Parent HRQoL summary score 48.8 ± 25.2 No 230 92 Family summary score 72.7 ± 27 Need for additional job by a family member Total score 51.9 ± 22.2 Yes 35 14 No 215 86 also the limited facilities and services available for Need to travel to another diseased children and their caregivers. In addition, this governorate may relate directly to the fact that most of the burden is Yes 98 39.2 falling on mothers (50.4%). No 152 60.8 The total PedsQL™ FIM and parental HRQoL of Accommodation expenses caregivers of children with CKD was lower in our Yes 70 28 population compared with other studies of caregivers of No 180 72 children with other chronic diseases (asthma [26], osteogenesis imperfecta [27], sickle cell disease [8], Degree of financial hardship asthma and heart diseases [3], chronic gastrointestinal No 32 12.8 disorders [2], chronic pain [7], nephrotic syndrome [28], Little 19 7.6 disabilities [29], and different chronic conditions [15]). Moderate 49 19.6 Notably, the lowest score in our study was the worry Great 150 60 function. This may be due to the nature of CKD and Coping strategies N = (218) its anticipated progression to ESRD and related premature mortality, in addition to worry about the None 137 62.8 efficacy, side effects of treatment, and comorbidities Sold property 46 21.1 associated with CKD. This was consistent with results Took out a loan 25 11.5 of studies in caregivers of children with nephrotic Forego making a big purchase 6 2.8 syndrome, one of the major causes of CKD in our Fundraising 4 1.8 children, who also reported the lowest score in worry The total number was 218 because 32 caregivers had no hardship function [28, 30]. On the other hand, the highest score in our study was in the family relationships (74.5 ± 30.6). This may be insurance and only 3.2% of children were treated on due to the way the Egyptians react in coping with government expense by a ministerial decree while about chronic disease, especially in children, as family three quarters (76%) shared paying treatment through cooperation and cohesion is a common feature in facing both health insurance and out-of-pocket. The remaining difficulties. However, it was not possible to establish 14% had to pay for treatment out-of-pocket. This is be- whether these positive family relationships were found cause health insurance covers the cost of some drugs before the diagnosis of CKD or not. and investigations; the family must cover the rest of Compared to fathers and brothers, mothers and sisters medical treatment from out-of-pocket. The total FIM of children with CKD reported significantly lower scores and parental HRQoL scores were more severely im- in total FIM, parental HRQoL, and family summary paired than family functioning. scores. This is because mothers usually carry a Lower scores in most of the scales in this study reflect disproportionate number of parenting demands (such as the inability of caregivers to deal with the different monitoring the child’s compliance to treatment, follow- stressors due to caring for their diseased children and up visits, hospitalization, diet, and fluid requirements) Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 6 of 8 Table 4 Mean scores of PedsQL™ Family Impact Module in Table 5 Predictors of total PedsQL™ Family Impact Module caregivers of CKD children, Assiut, Upper Egypt, 2018 score in parents of CKD children, Assiut, Upper Egypt, 2018 Parental HRQoL Family summary Total FIM Variable Beta t Sig. 95% CI Mean ± SD Mean ± SD Mean ± SD Responding caregiver 0.38 7 < 0.001 4–7.1 Caregiver Degree of financial hardship 0.27 4.9 < 0.001 3.5–8.1 Mother 37.4 ± 22.6 63.9 ± 28.8 41.9 ± 20.3 Treatment modality 0.26 4.4 < 0.001 8.6–22.4 Father 61.4 ± 19.3 86.4 ± 15.2 62.9 ± 15.7 Socioeconomic level 0.18 3.4 0.001 2.8–10.4 Brother 59.9 ± 26.4 76.5 ± 27.6 62.5 ± 24.4 Stage of CKD 0.04 0.6 0.51 0.9–1.9 Sister 47.4 ± 29.1 55.8 ± 28.5 47.9 ± 24.8 Constant 6.2 < 0.001 21.5–41.4 F value 17.5 12.5 19 R square 0.420 P value < 0.001* < 0.001* < 0.001* Simple linear regression analysis Degree of financial hardship No 66.2 ± 18.6 82.5 ± 24.1 66.9 ± 17.9 and lifestyle disruptions (such as absence from work or Little 64.1 ± 23.7 86.7 ± 19.9 59.6 ± 17.2 quitting job). In addition, mothers are responsible for Moderate 58.3 ± 20.7 58.3 ± 20.7 59.6 ± 17.2 the daily care of other family members along with their High 39.9 ± 24 66.5 ± 28.7 44.5 ± 21.3 ill child’s health and functioning. Our findings were F value 29.5 10.9 27.2 similar to those reported in other populations where P value < 0.001* < 0.001* < 0.001* mothers of children with chronic pain, cancer, and dis- abilities reported significantly worse total FIM, parent Treatment modality HRQoL, and family summary scores than fathers [7, 29, Conservative 52.4 ± 24.1 78.1 ± 22 55.4 ± 20.6 31]. Our findings are also supported by another research Hemodialysis 27.2 ± 20.4 40.6 ± 31.8 31.8 ± 20.8 using the Ulm Quality of Life Inventory for parents, in T value 5.9 8.8 6.4 which mothers of CKD children achieved significantly P value < 0.001* < 0.001* <0.001* lower total, physical, emotional, and daily functioning Socioeconomic level than fathers [32]. There were statistically significant differences in the Low 40.5 ± 25.6 63.4 ± 29.6 43.8 ± 23.1 PedsQL™ FIM scores in all domains of QoL by the Middle 48.9 ± 24.9 48.9 ± 24.9 52.8 ± 21.6 degree of financial hardship where caregivers who suffer High 55.6 ± 23.8 77.7 ± 24.6 56.8 ± 21.9 from great financial hardship due to their children CKD F value 3.9 2.6 4.1 acquired the least score in all domains of FIM. As a P value 0.02* 0.07 0.01* result of poverty and working mainly in low-paying jobs Duration of CKD (67.6% of fathers work in simple and non-technical pro- fessions while 94% of mothers were not working for ≤ 5 years 46.4 ± 25.1 71 ± 28.6 71 ± 28.6 cash), caregivers of children with CKD in our study tend > 5 years 52.6 ± 25 75.5 ± 23.9 55.3 ± 21.9 to achieve lower QoL scores with increase in financial t value 1.9 1.3 1.8 hardship. P value 0.06 0.2 0.07 Regarding treatment modality, our study revealed that Stage of CKD there were statistically significant differences between Stage 1 47.2 ± 27.2 77.1 ± 20.9 52.4 ± 22.4 conservative and dialysis groups in all domains of PedsQL™ FIM, except for communication and worry Stage 2 61.5 ± 21.9 75.9 ± 31.6 62.3 ± 22 domains. In all domains, caregivers of children who Stage 3 46.5 ± 25.7 80.8 ± 17.6 49.3 ± 23.6 received conservative treatment achieved higher scores Stage 4 51.3 ± 20.6 84.9 ± 13.2 54.9 ± 16.1 than caregivers of children on hemodialysis. This can be Stage 5 45.6 ± 24.8 65.5 ± 31.2 48.5 ± 22.1 explained by the burden of hemodialysis sessions (three F value 1.9 2.4 1.89 times weekly and each session lasts about 3–4 h), P value 0.12 0.052 0.11 transportation from remote areas, restriction of activities, work disruption, cost of dialysis and other ANOVA test (post hoc) was used Independent sample t test was used medications plus psychological upset and worry about *Significant complications of the invasive dialysis-related procedures. A study in Germany using the Ulm Quality of Life In- ventory for Parents (ULQIE) showed that parents of children undergoing dialysis also reported the lowest Darwish et al. Journal of the Egyptian Public Health Association (2020) 95:27 Page 7 of 8 scores on all scales, whereas parents of children under- 6 Supplementary information Supplementary information accompanies this paper at https://doi.org/10. going conservative treatment reached the higher HRQoL 1186/s42506-020-00058-7. scores [32]. Though not reaching the level of significance, Additional file 1. caregivers of children with CKD duration > 5 years Additional file 2. reported higher scores in parental HRQoL family Additional file 3. summary than those of children with CKD duration ≤ 5 years. This phenomenon is called “response shift” which means that with passage of time caregivers learned how Abbreviations CKD: Chronic kidney disease; ESRD: End-stage renal disease; FIM: Family to cope with and adjust to their child illness and thus impact module; eGFR: Glomerular filtration rate; HRQoL: Health-related report better QoL [33]. In contrast to our results, a quality of life; PedsQL™ FIM: Pediatric quality of life™ family impact module; study of family impact of children with ESRD revealed QoL: Quality of life; SPSS: Statistical Package for Social Science; ULQIE: Ulm Quality of Life Inventory for Parents higher scores of the PedsQL™ FIM with short duration (< 5 years) than longer duration (≥ 5 years) [23]. This result suggests that a longer duration of ESRD can Acknowledgements The authors express their gratitude to caregivers and children with CKD who impose additional burden on parents or caregivers participated in the study. especially when their children reach end-stage of the disease. Authors’ contributions Similarly, there were statistically significant differences MD and TI suggested the research idea, designed the work, prepared the in the total PedsQL™ FIM and parent HRQoL scores by study protocol, and revised the manuscript. TI calculated the sample size. SH social class where caregivers from the higher requested the tools, collected the data, participated in the analysis and interpretation of the results, and wrote the draft of the manuscripts. ST socioeconomic level reported higher scores in all domains participated in the data collection and clinical interpretation of results and than those in the middle and low socioeconomic level. discussion. HA supervised the whole work, especially the interpretation of Thus, with improvement in socioeconomic conditions, data. All authors have read the manuscript and approved the submitted version and agreed corresponding author is MD caregivers tend to adjust better to their children CKD and so achieve higher QoL scores. Funding This research did not receive any funding from any agency in the public, 4.1 Strengths and limitation of the study commercial, or not-for-profit sectors. To our knowledge, this study is the first to use PedsQL™ Family Impact Module to study the family impact of Availability of data and materials CKD in children in all stages of CKD not only ESRD Datasets used in the current study are available from the corresponding author on reasonable request. [23]. However, this study has some limitations: caregivers were recruited in the study during a routine follow-up visit or after hemodialysis sessions and there- Ethics approval and consent to participate The study was approved by the Ethics Review Committee of Assiut Faculty fore the reported scores are not in direct response to of Medicine (reference # IRB00008718). Verbal informed consent was disease exacerbation. Research will be required to assess obtained from both caregivers and children before participating in the study the short-term impact of such events on caregivers. An- (verbal consenting process was accepted by the ethical review board of the Faculty of Medicine, Assiut University, due to the high prevalence of low other limitation is the absence of a control group due to education levels, especially in rural areas, the prevailing culture of fear of cross sectional nature of the study. However, the QoL signing any document, and the nature of research that is not interventional, scores of parents of children with CKD were lower than only questionnaire-based). For illiterate persons, we used the awareness methods where adequate information was given to potential participants, caregivers of healthy children. available family members, and health care team in the study sites. Consent from legally authorized representatives (service provision; doctor or nurse or other literate family member) of participants was taken in case of illiterate 5 Conclusion participants. Most caregivers were involved in paying for treatment of their children either totally or sharing with the health Consent for publication insurance and suffered different degrees of financial Not applicable. hardship. Significant predictors of the Total FIM were the responding caregiver, degree of financial hardship, Competing interests treatment modality, and socioeconomic class. 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