الفهرس 
Introduction
Chronic kidney disease in childrenOnly 14 pages are availabe for public view
 |  | from | 187 |  |  |
| | | from | 187 | | |
Abstract
CKD is a generic name that implies functional or constructional damage of the kidney or reduction in GFR less than 60 ml/min/1.73 m2 according to Schwartz formula for more than 3 months. Children with CKD are at risk of comorbidities, neurocognitive dysfunction and psychological changes that have an impact on QoL. The main objectives of this study were to measure HRQoL among children with CKD, identify family impact and economic burden of CKD and measure caregiver’s satisfaction with health care offered to their children. This study was conducted in the nephrology outpatient clinic, nephrology and dialysis unit in Children University Hospital and Sidi Galal health insurance clinic in Assiut from May 2017 to May 2018. In this study, we used the PedsQL measures, child self-report in both PedsQL Generic Core Scales and PedsQL ESRD scale. We also used the PedsQL FIM score and PedsQL Healthcare Satisfaction Module for caregivers of children with CKD. Two hundred and fifty children with CKD and 250 age and sex-matched healthy controls completed the PedsQL Generic Core Scales to compare their HRQoL scores with the children with CKD. Thirty-six children with ESRD who receive regular hemodialysis in the dialysis unit in Children University Hospital in Assiut, completed the PedsQL ESRD scale. Most of cases and controls were resided in rural areas (84.8% & 83.2% respectively) and more than half of of mothers of cases (59.2%) were illiterate or just read and write compared with 16% only in controls. About fathers, 40.8% of fathers of cases were illiterate or just read and write compared to 10.4% only among fathers of controls. Most of cases and controls were in the middle SES (67.6% & 66.4%) respectively, and family history of CKD was reported among 17.2% of cases and only 1.2% of controls with significant difference. QoL assessed by PedsQL Generic Core Scales was significantly lower in children with CKD than in the healthy children. In general, healthy children achieved significantly higher mean scores in all domains of QoL than children with CKD. The most marked difference from healthy children was in school functioning, while the highest scores was on the social subscale although the scoring was lower than in healthy children. There was weak positive significant correlation between total PedsQL score and socioeconomic scale score in both cases and controls. In about two thirds of cases (68.4%), nephrotic syndrome was the most common cause of CKD followed by congenital anomalies (8.8%). Half of the cases (50.2%) were in stage 5 CKD and the majority of cases (84%) received conservative treatment. About three quarters of caregivers (76%) paid for treatment through both health insurance and out-of-pocket, 14% were forced to pay for treatment from their out-of-pocket only, 6.8% by health insurance alone and only 3.2% of children were treated on the government expense via ministerial decree. More than half of caregivers of the studied children with CKD (60%) reported having great financial hardship due to CKD of their children, and only 12.8% had no financial hardship. The main coping strategies that were used by caregivers were sold property (21.1%) followed by taking out a loan (11.5%).Comparing PedsQL Generic Core Scales score in children with CKD by treatment modality showed that conservative group reported significant higher scores in all domains of QoL except in school function, there was no significant difference from the dialysis group. Similarly, there was significant difference in all the domains of QoL by the degree of financial hardship, with children whose caregivers suffer from great financial hardship reported the least score in all domains of QoL. Significant difference was also reported in all the domains of QoL (except with the emotional domain) with the height of the children with CKD and children with short stature reported lower scores in all domains of QoL than children with normal height. No significant difference was reported in the PedsQL Generic Core Scales score according to the duration of CKD or age group of the children with higher scores reported by children at the young age group (8-12) and duration of CKD > 5 years. HRQoL of the studied children was not associated by CKD severity as there was no significant difference in all domains of QoL scores between different stages of CKD. On the other hand, there was significant difference in the social, school, psychosocial and total QoL score by SES and children from the middle SES report higher scores in all domains than those in the higher and low SES. On multivariate analysis, only type of treatment and degree of financial hardship were significantly associated with the total PedsQL Generic Core Scales. Regarding family impact of CKD, total FIM and parental HRQoL scores were more severely impaired than family functioning, the lowest score was in the worry function and the highest score was in family relationships. Mothers of children with CKD (followed by sisters) reported significantly lower total FIM, family summary and parent HRQoL scores. There was significant difference in all domains of PedsQL FIM, except communication and worry domains between conservative and dialysis groups with caregivers of children who received conservative treatment achieved higher scores than caregivers of children on hemodialysis in all domains. There was significant difference in all domains of the PedsQL FIM score by the degree of financial hardship and caregivers who suffer from great financial hardship reported the least score in all domains of the PedsQL FIM. Regarding CKD duration, there was significant difference only in emotional and social functioning, but caregivers of children with CKD duration > 5 years reported higher scores in all domains of PedsQL FIM than those of children with CKD duration ≤ 5 years. Similarly, no significant difference was reported between caregivers of children aged 8-12 and 13-18 years old. However, caregivers of older children reported slightly higher scores in all domains of QoL except in family summary score and its subscales, daily activities and family relationships. There was no significant difference in the FIM summary scores by stage of CKD, however caregivers of children with stage 5 of CKD reported the lowest scores. There was moderate positive significant correlation between total PedsQL™ FIM and PedsQL™ Generic Core Scales Scores indicating that higher parental HRQoL and family functioning scores were associated with higher child HRQoL. Regarding healthcare satisfaction, the mean scores of the PedsQL HS in this study were lower in the information, communication and emotional needs respectively and the highest score was in the overall satisfaction. When comparing the PedsQL HS by site of delivery of care, there was significant difference in technical skills and overall satisfaction. PedsQL HS scores were higher in children receiving treatment in Children University Hospital in Assiut than in Sidi Galal Health Insurance Clinic (except with information and communication). Caregivers of children undergoing dialysis were more satisfied than caregivers of children on conservative treatment with significant difference only in inclusion of family and technical skills domains. No significant difference in any of the domains of PedsQL HS was reported either duration of CKD or age group of the children, with nearly equal scores in all groups. on the other hand, there was significant difference in the communication, technical skills and total score of PedsQL HS by SES and the families in the middle SES were the most satisfied ones. Assessment of the QoL among children with ESRD using a disease-specific questionnaire: PedsQL ESRD Module showed that the lowest scores were in general fatigue and perceived physical appearance. There was no significant difference in any of the domains of the PedsQL ESRD with age group of the children with nearly similar scores in both age groups. Also, when comparing of PedsQL ESRD score by duration of ESRD, there was no significant difference in any of the domains except with perceived physical appearance and children with duration ≤ 5 years achieve higher scores in all domains of QoL than children with duration > 5 years. Significant difference in the PedsQL ESRD was reported with SES in the domains of family and peer interaction, worry and total score and children with ESRD with low SES reported the lowest scores in all domains. Regarding association between generic and specific HRQoL measures, there was strong positive significant correlation between PedsQL Generic Core Scales score and PedsQL ESRD module score in the studied children with ESRD. Based on these results, we recommend conducting further studies on national or multicentric level to develop a special program for QoL improvement in children with CKD, adapting the teaching programs to the circumstances of the children with CKD to improve their school functioning, provide caregivers with more information about their child’s CKD and treatment, expanding treatment at state expense to include all children with ESRD specially those who are not covered by any type of health insurance and providing informational and emotional support to caregivers of children with CKD.