Quality of life of children with idiopathic nephrotic syndrome according to clinical types

2018 ◽  
Vol 60 (1) ◽  
pp. 38-41
Author(s):  
Sang Ngoc Nguyen ◽  
Viet Quoc Tran ◽  
Quang Van Vu ◽  
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Idiopathic Nephrotic Syndrome

scholarly journals Reliability of generic quality-of-life instruments in assessing health-related quality of life among children and adolescents with idiopathic nephrotic syndrome: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ann E. Aronu ◽  
Samuel N. Uwaezuoke ◽  
Uzoamaka V. Muoneke
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Children And Adolescents ◽  
Idiopathic Nephrotic Syndrome ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Generic Quality ◽  
Quality Of Life Instruments

Abstract 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 independently retrieved relevant data, including the generic quality-of-life instruments and the subjects’ and controls’ aggregate health-related quality of life scores, using a preconceived data-extraction form. Results Ten original articles were selected for qualitative and quantitative analyses. Some of the studies reported the following significant findings. The mean health-related quality of life scores for children with prevalent and incident nephrotic syndrome were 68.6 (range, 52.6–84.6) and 73.7 (range, 55.9–91.5), respectively. Children with idiopathic nephrotic syndrome and their controls with other chronic diseases had median scores of 65 (interquartile range, 59–68.75) and 62.2 (interquartile range, 58.05–65.78). Patients on oral immunosuppressive drug and intravenous rituximab reportedly had median scores of 76.2 and 72.6 and mean scores of 71.4 (range, 55.4–87.4) and 61.6 (range, 42.1–81.1) respectively for quality-of-life assessment on the ‘school functioning domain.’ Conclusions The health-related quality of life scores in patients with idiopathic nephrotic syndrome are consistently low. Lower scores occur in prolonged disease duration and severe clinical phenotypes, whereas the scores are higher than the scores obtained in other chronic diseases. These consistent findings underscore the reliability of the current generic instruments in assessing health-related quality of life in patients with idiopathic nephrotic syndrome.

Assessing worry domains and quality of life in a population of adolescents with an idiopathic nephrotic syndrome

2012 ◽  
Vol 60 (5) ◽  
pp. S150
Author(s):  
A. Meynard ◽  
V. Guigonis ◽  
F. Bandin ◽  
E. Berard ◽  
M. Caillez ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Idiopathic Nephrotic Syndrome

scholarly journals Prevention of relapses with levamisole as adjuvant therapy in children with a first episode of idiopathic nephrotic syndrome: study protocol for a double blind, randomised placebo-controlled trial (the LEARNS study)

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e027011 ◽  
Author(s):  
Floor Veltkamp ◽  
Djera H Khan ◽  
Christa Reefman ◽  
Susan Veissi ◽  
Hedy A van Oers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Adjuvant Therapy ◽  
Study Protocol ◽  
Standard Therapy ◽  
Idiopathic Nephrotic Syndrome ◽  
First Episode ◽  
Double Blind ◽  
Frequent Relapses

IntroductionIdiopathic nephrotic syndrome (INS) is characterised by a high relapse rate up to 80% after initial response to standard therapy with corticosteroids. Steroid toxicity is common and causes a great burden of disease that negatively influences the health-related quality of life (HRQoL). Recently, studies have shown that levamisole, an anthelminthic drug, significantly improves relapse-free survival in children with frequent relapses or steroid dependency. Compared with other steroid-sparing drugs, levamisole has relatively few side effects. We hypothesise that adding levamisole to standard therapy with corticosteroids in children with a first episode of INS will prevent relapses, decrease cumulative dosage of steroids used and improve HRQoL. This paper presents the study protocol for the LEARNS study (LEvamisole as Adjuvant therapy to Reduce relapses of Nephrotic Syndrome).Methods and analysisAn international, double-blind, placebo-controlled randomised trial will be conducted in 20 participating hospitals in the Netherlands and Belgium. Participants (n=92) with a first episode of INS, aged 2–16 years, who achieve remission after 4 weeks of oral prednisolone will be randomly assigned (1:1) to receive either levamisole 2.5 mg/kg alternate day or placebo added to prednisolone (18-week tapering schedule) for a total of 24 weeks. Follow-up will be until 2 years after first presentation. Additionally, parents and/or children will fill out five HRQoL questionnaires. Primary outcome of the LEARNS study is occurrence of relapses within 12 months after first presentation. Secondary outcomes include time to first relapse, cumulative steroid dose after 2 years, safety parameters and quality of life scores.Ethics and disseminationThe trial was approved by the Medical Ethical Committee. Results of the study will be published in a peer-reviewed journal.Trial registration numberNL6826, 2017-001025-41

scholarly journals Quality of life in children with severe forms of idiopathic nephrotic syndrome in stable remission—A cross‐sectional study

2019 ◽  
Vol 108 (12) ◽  
pp. 2267-2273 ◽  
Author(s):  
Aphaia Roussel ◽  
Jean‐Daniel Delbet ◽  
Laurianne Micheland ◽  
Georges Deschênes ◽  
Stephane Decramer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Idiopathic Nephrotic Syndrome ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional

scholarly journals SAT-316 HEALTH RELATED QUALITY OF LIFE OF CHILDREN WITH NEPHROTIC SYNDROME IN LAGOS NIGERIA

2019 ◽  
Vol 4 (7) ◽  
pp. S140 ◽  
Author(s):  
A. Solarin ◽  
M. Adekunle ◽  
H. Gbelee ◽  
A. Animashaun ◽  
F. Njokanma
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

CLINICAL CASE: STEROID-RESISTANT NEPHROTIC SYNDROME

2021 ◽  
pp. 13-17
Author(s):  
А.Е. Турсын
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Arterial Hypertension ◽  
Clinical Case ◽  
Steroid Resistant ◽  
Steroid Resistant Nephrotic Syndrome ◽  
Moderate Severity ◽  
Syndrome Diagnosis ◽  
Pathogenetic Therapy

Описан клинический случай пациент с нефротическим синдромом, стероид резистентный вариант, с артериальной гипертензией, осложненный полисерозитом (гидроторакс, асцит, плеврит). Пациент поступил в клинику в состоянии средней степени тяжести, с массивными отеками, полисерозитом, артериальной гипертензией и выраженным нефротическим синдромом. Диагноз: Гломерулярная болезнь. Нефротический синдром, стероид резистентный вариант. Функция почек снижена (СКФ- 84мл/мин по Шварцу). Двухсторонний экссудативный плеврит. Гидроторакс. Полисерозит (в рамках нефротического синдрома) был установлен на основании выраженного нефротического синдрома. Пациенту была проведена патогенетическая терапия. Отмечено улучшение состояния больного, в виде снижения отеков, нормализаций артериального давления, что в свою очередь поспособствовало сохранению и улучшению качества жизни пациента. A clinical case of a patient with nephrotic syndrome, steroidresistant variant, with arterial hypertension complicated by polyserositis (hydrothorax, ascites, pleurisy) is described. The patient was admitted to the clinic in a state of moderate severity, with massive edema, polyserositis, arterial hypertension, and severe nephrotic syndrome. Diagnosis: Glomerular disease. Nephrotic syndrome, steroidresistant variant. The kidney function is reduced (GFR - 84 ml/min according to Schwartz). Bilateral exudative pleurisy. Hydrothorax. Polyserositis (within the framework of nephrotic syndrome) was established based on the severe nephrotic syndrome. The patient underwent pathogenetic therapy. An improvement in the patient's condition was noted, in the form of a decrease in edema, normalization of blood pressure, which in turn contributed to the preservation and improvement of the patient's quality of life.

scholarly journals Health-Related Quality of Life Difference between Early Diagnosed and Finished Therapy of Nephrotic Syndrome in Children

2021 ◽  
Vol 9 (B) ◽  
pp. 801-805
Author(s):  
Riska Habriel Ruslie ◽  
Darmadi Darmadi ◽  
Cennikon Pakpahan
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Therapy Group ◽  
Steroid Resistance ◽  
Health Related Quality ◽  
Female Ratio ◽  
Related Quality ◽  
Health Related ◽  
The Difference

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 laboratory results were obtained. HRQOL was measured using PedsQL 4.0 questionnaire in the Indonesian language. The difference of HRQOL was analyzed using independent T-test. RESULTS: A total of 100 subjects enrolled in this study and divided into two groups. Male-to-female ratio was 4:1 in early diagnosed group and 7.3:1 in finished therapy group. Mean age of subjects for the early diagnosed group was 4.6 years and finished therapy group was 5.3 years. Total HRQOL was improved after treatment administration in children with nephrotic syndrome (p < 0.001). The improvement was most significant in physical domain (p = 0.002). CONCLUSION: HRQOL in children with early diagnosed nephrotic syndrome was lower compared to children with finished therapy of nephrotic syndrome.

scholarly journals Evaluating the Quality of Life of 231 Children With Primary Nephrotic Syndrome and Assessing Parental Awareness of the Disease

2021 ◽  
Vol 9 ◽  
Author(s):  
Na Li ◽  
Jia Hao ◽  
Tong Fu ◽  
Yue Du
Keyword(s):  
Quality Of Life ◽  
Nephrotic Syndrome ◽  
Sleep Disturbances ◽  
Integrated Management ◽  
Psychological Wellbeing ◽  
Average Score ◽  
Online Questionnaire ◽  
Primary Nephrotic Syndrome ◽  
Making Friends

Objective: This study aims to investigate the quality of life of children with primary nephrotic syndrome (PNS), assess their parents' disease awareness, and provide a basis for the comprehensive management of children with PNS.Methods: A total of 231 children with PNS who were hospitalized in the Department of Pediatric Renal Rheumatology and Immunology in the ShengJing Hospital of the China Medical University from March 2019 to October 2020 were selected as the study subjects. The subjects and their parents were surveyed via a disease education and communication WeChat group and online questionnaire to investigate the children's quality of life, the needs of the parents, and their knowledge related to the disease.Results: In 93.51% of cases, the child's quality of life was affected, with mild to moderate effects being the most frequent (90.47%). The lowest overall quality of life scores were recorded for children who had been diagnosed 1–3 year prior to inclusion in the study, and the scores plateaued thereafter. On the physical functioning scale, the longer the illness, the greater the physical impact, with children typically experiencing pain and fatigue. The children generally scored low on the emotional functioning scale, exhibiting sleep disturbances for up to 5 years and worrying about accidents. The children's average score on the social functioning scale was high, with males achieving significantly higher scores (69.61 ± 25.42) than females (62.30 ± 27.51), and more than one-third of the children experiencing problems getting along with other teenagers and making friends. The primary problems expressed by parents were anxiety (59%), sadness (44%), fear (43%), and depression (40%), and several parents indicated that they struggled with issues of self-blame.Conclusion: PNS impacts the physical and psychological wellbeing of children suffering from the condition, significantly reduces their quality of life, and negatively impacts the psychological wellbeing of their parents. Therefore, children with PNS and their families need integrated management by doctors, nurses, dieticians, psychotherapists, educational institutions, and social stakeholders to improve their quality of life.

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