The quality of life in children with nephrotic syndrome at Prof I.G.N.G Ngoerah Hospital, Denpasar, Bali (original) (raw)
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Quality of Life of Nephrotics Children and Its Related Factors
American Journal of Clinical Medicine Research
Background: Nephrotic syndrome (NS) is a common kidney disease found in children. Its medical and psychosocial complications can affect the quality of life (QoL). The aim of this study was to have a description on the QoL and its related factors using Pediatric Quality of Life Inventory TM (PedsQL TM). Methods: An analytical descriptive study was conducted on patients, aged 2-18 years old in the outpatient and inpatient ward of nephrology,
Heath-Related Quality of Life in Iranian Children with Nephrotic Syndrome
Iranian Journal of Pediatrics, 2022
Background: Nephrotic syndrome (NS), like any other chronic illness, may affect the health-related quality of life (HRQoL) of children, so do the complications related to the disease, and its treatment. A better understanding of the (HRQoL) of people with nephrotic syndrome may help to better guide their treatment. Methods: Sixty children with nephrotic syndrome were assigned as the first case group, besides 81 healthy children as the first control group and 98 children with other chronic illnesses as the second control cohort. The participant and his or her caregiver were asked to fill in the standard HRQoL questionnaire. The patient's demographic data were also collected and analyzed using SPSS version 26 software. Results: 60 patients with nephrotic syndrome (mean age 9.8 ± 3.7) scored lower grades in physical, social, educational fields as well as total scores than the healthy controls (mean age 9.5 ± 2.7) and higher than the controls with other chronic diseases (mean age 9.7 ± 3.9) (P < 0.05). The emotional QOL score was close to that of the non-healthy control group. No correlation was found between the clinical phenotype of disease regarding the response to steroids and HRQOL (P > 0.05). Conclusions: The study shows that nephrotic syndrome can affect all aspects of the quality of life of patients. We suggest that comprehensive care of patients with NS be routinely managed in a multidisciplinary clinic with filling HRQOL questionnaires integrated as a common practice.
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 dom...
Open Access Macedonian Journal of Medical Sciences, 2021
BACKGROUND: Nephrotic syndrome is the most common glomerular disease in children with high economic burden. The management of nephrotic syndrome at present is not only focusing in outcomes of disease but also the burden related to health-related quality of life (HRQOL). HRQOL of children with nephrotic syndrome is influenced by steroid dependence, steroid resistance, cytotoxic therapy, frequency of relapse, disease severity, socioeconomic status, and duration of illness. AIM: The objective of the study is to determine the difference of HRQOL in children between early diagnosed nephrotic syndrome and finished therapy of nephrotic syndrome. METHODS: A cross-sectional study was conducted between January and December 2018. Subjects were children aged 1–18 years with nephrotic syndrome and then divided into 2 groups based on either in the 1st week of full dose corticosteroid treatment or in the 1st week after finishing therapy equally. Demographical data, nutritional status, and laborato...
Pediatric nephrology (Berlin, Germany), 2015
The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL™ 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. This was a prospective study in which 127 children (age range 8-17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N = 67) and incident (N = 60) disease at the study enrollment visit. The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p = 0.01) and pain interfer...
Predictors of quality of life (QOL) and treatment adherence among children with Nephrotic Syndrome
Journal of Family Medicine and Primary Care, 2024
Introduction: Any significant changes in the growth and development of any aspect of life will ultimately affect the health-related quality of life (HRQOL) of children with nephrotic syndrome. Various factors can influence treatment adherence, which can promote or decline the child's quality of life (QOL). Objective: To assess the quality of life and adherence to treatment regimen and to identify the predictors of QOL and adherence to treatment regimen among children with nephrotic syndrome. Method: A cross-sectional study was conducted among 59 children with nephrotic syndrome who attended the Paediatric Department of AIIMS, Bhubaneswar, using the PedsQL 4.0 generic core scale to assess the quality of life and adherence response scale. Both descriptive and inferential statistics were performed using the SPSS 20 version. Results: The overall QOL median score was 93.48, with an IQR of 18.48, which indicated good QOL. A median score of treatment adherence was 16 with IQR 5, which indicated that the overall treatment adherence was good. Type of nephrotic syndrome (P = 0.014), developmental stage (P = 0.018), education of mother (P = 0.026), and occupation of mother (P = 0.026) were the variables predicted QOL. Duration of disease (P = 0.006) and duration of therapy (P = 0.005) significantly predicted treatment adherence. Conclusion: Children need continuous reinforcement on treatment adherence strategies to attain and maintain good QOL so that it can help to reduce the disease severity. Controlling the predictors that influence the QOL and treatment adherence has to be counseled among the parents so that their adherence can be sustained throughout the disease process to maintain good QOL.
Health and Quality of Life Outcomes
Introduction Most of the studies reporting the negative impact of idiopathic nephrotic syndrome on health-related quality of life in children and adolescents were conducted with generic quality-of-life instruments rather than disease-specific instruments. The consistency of these studies' findings using these generic instruments is not well established. Aim This systematic review aims to determine the reliability of current generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome. Methods We searched the PubMed, MEDLINE, EMBASE, and Google Scholar databases for articles published between 2000 and 2020, using appropriate descriptors. We included primary studies that met the eligibility criteria, independently screened their titles and abstracts, and removed all duplicates during the study-selection process. We resolved disagreements until a consensus was reached on study selection. We indepen...
Journal of Nephrology, 2021
Background Long-term psychosocial outcomes and health-related quality of life (HRQOL) in adults with pediatric onset of frequently relapsing or steroid-dependent idiopathic nephrotic syndrome (FRNS or SDNS) remain to be determined. Methods In this prospective cohort study, 59 adults with pediatric onset of FRNS/SDNS and persistent active glomerular disease in adulthood completed the GEDEPAC-2 questionnaire exploring 11 well-being domains. Data were compared to the French general population (FGP) with standardized incidence ratio ([SIR]; adjusted for period, age, gender). Regression models were performed to identify predictive factors of psychosocial well-being. Results In 82% of cases, the questionnaire was completed while the participants (n = 59; 47 men; median age = 32 years; median number of relapses = 13) were in complete remission (under specific therapy in 76% of cases). Participants had higher educational degree than in the FGP (SIR = 6.3; p < 0.01) and more frequently a managerial occupation (SIR = 3.1; p < 0.01). Social integration was acceptable with regard to marital status and experience of sexual intercourse, but experiences of discrimination were far more frequent (SIR = 12.5; p < 0.01). The SF-12 mental component summary (MCS) score was altered (Z-score = − 0.6; p < 0.01) and mean multidimensional fatigue inventory (MFI-20) global fatigue score appeared high (12). Transfer from pediatric to adult healthcare was followed by a period of discontinued care for 33% of participants. Multivariate analysis revealed a close relationship between MFI-20, physical health, and MCS. Conclusions This study shows that pediatric onset FRNS and SDNS may have a long-term negative impact on mental HRQOL and highlights the impact of fatigue, which is often not adequately considered in routine care.
Health-related quality of life in children with chronic kidney disease in Assiut, Egypt
The Egyptian Journal of Community Medicine, 2021
Background: Chronic kidney disease (CKD) is known to be one of the major health issues in children under the age of 18 years. CKD affects every organ in the body therefore, has a major consequence on both mortality and quality of life (QoL) of children. Objective: To compare QoL in diseased and healthy children and find out factors associated with QoL score in children with CKD. Method: a cross sectional comparative study was conducted on 250 children with CKD and 250 healthy peers using the Pediatric qualify of life inventory (PedsQL) 4.0. Results: Healthy children achieved statistically significant higher mean PedsQL in all domains of quality of life in all domains of PedsQL. Children on conservative treatment achieved statistically significant higher scores in all domains of PedsQL than those on dialysis. There was no statistically significant difference in all domains of PedsQL regarding the severity of CKD. Children receiving hemodialysis reported lower scores in all dimensions of QoL than children on conservative treatment. Conclusion: HRQoL of children with CKD assessed by PedsQL was lower compared to healthy controls and school functioning was the most affected dimension. Study limitations: Children were recruited during routine follow up or after hemodialysis session so, reported scores were not in direct response to an acute event in disease process requiring hospitalization. Implications: Application of psychosocial counseling program for children and their families together with social and educational support groups to enable children with CKD to live and function independently in adulthood.
Quality of Life in Children at Different Stages of Chronic Kidney Disease in a Developing Country
Research Square (Research Square), 2024
Background: Children with chronic kidney disease (CKD) require comprehensive assessments, including medical and quality of life (QoL) evaluations. Few studies have been conducted in developing countries. Methods: This cross-sectional study included 2-18-year-old patients who were categorized into 4 groups: the CKD stage 2-3, stage 4-5, stage 5 with dialysis (D), and kidney transplantation (KT) groups. QoL was measured using the Pediatric Quality of Life Inventory TM (PedsQL TM) version 4.0; relationships between different factors and QoL were determined using multivariable linear regression analysis. Results: Eighty-seven patients (mean age: 13.3 (4.1) years) were included. The self-reported total scores were 77.5 (12.5), 78.9 (11.2), 77.4 (16.2), and 76.1 (10.9) in the stage 2-3, stage 4-5, stage 5D and KT groups, respectively. Parent-reported scores showed a weak-to-moderate correlation with self-reported scores (r=0.12-0.42), with total scores of 71.8 (12.7), 69.5 (14.9), 63.4 (14.8), and 70.8 (18.1) in the stage 2-3, 4-5, 5D and KT groups, respectively. Multivariable linear regression revealed that the parent-reported score in the stage 5D group was 15.92 points lower than that in the early CKD stage group (p=0.02); the score in the low maternal education group was 10.13 points lower than that in the high maternal education group (p=0.04). Conclusions: Parent-reported scores showed weak-to-moderate correlation with self-reported scores. CKD stage 5D patients and patients with low maternal education had lower QoL. Regular QoL assessment is recommended for advanced CKD patients and patients with socioeconomic vulnerabilities.