Long-term health-related quality of life outcomes of adults with pediatric onset of frequently relapsing or steroid-dependent nephrotic syndrome (original) (raw)
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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.
Kidney International, 2023
Objective: To examine initial and longitudinal health-related quality of life (HRQOL) in adolescent sports-related concussion (SRC) patients. Study: A prospective observational case-series study was conducted among adolescent SRC patients who were evaluated at a multidisciplinary pediatric concussion program. Health-related quality of life was measured using the child self-report Pediatric Quality of Life Inventory (PedsQL) generic score scale (age 13-18 version) and the PedsQL Cognitive Functioning scale. Initial and longitudinal HRQOL outcomes were compared between patients that did and did not develop post-concussion syndrome (PCS). Results: A total of 63 patients met the inclusion criteria during the study period. The mean age of the chort was 14.57 years (SD: 1.17) and 61.9% were male. The median time from injury to initial consultation was 6.5 days (IQR: 5, 11). At initial consultation, impairments in physical and cognitive HRQOL but not social or emotional HRQOL were observed. Initial symptom burden and length of recovery were associated with greater impairment in physical and cognitive HRQOL. Patients who went on to develop PCS had significantly worse physical and cognitive HRQOL at initial consultation and demonstrated a slower rate of recovery in these domains compared to those who recovered in less than 30 days. Conclusions: Adolescent SRC was associated with HRQOL impairments that correlated with clinical outcomes. No persistent impairments in HRQOL were detected among patients who achieved physician-documented clinical recovery. Future studies are needed to evaluate the clinical utility of HRQOL measurement in the longitudinal management of adolescent SRC and PCS patients.
Research Square (Research Square), 2022
Background: Nephrotic syndrome (NS) is one of the commonest pediatric chronic renal problems affecting children's worldwide. Beyond the well-known effects of on kidney function, NS can also have impact on the patients and care givers life style, peer relationship, social functioning, intellectual functions and behavioral characteristics. Objective: To assess the quality of life of children with NS as well as their caregivers and to determine the factors that adversely affect it. Methods: A cross-sectional analytical study conducted using a pre coded, pretested structured questionnaire including PedsQoLTM 4.0 scale score generic core and family impact module. Data obtained for demographic and clinical parameters of children and for each domain of generic core and family impact module and data was be analyzed using IBM SPSS® version 26. Results: 153 children aged 4-18 years with NS were included over a period of three months. Among the scores with median (inter-quartile range) the domains of generic core scale, child school performance was most affected with 73(53.0-97.5) followed with child physical performance 87(75-97.5). Children whose parents were earning less (p=0.009), children having hypertension (p=0.047) and steroid resistant clinical type (p=0.016) of NS were at increased odds of encountering poorer child health related quality with AOR of 0.306, 2.464 and 2.560 respectively. In the family impact module domains with median (inter-quartile range), the most affected are being 'worry' with 60.0 (45.5-75), followed with emotion 77(54.5-90.0). It was demonstrated that caregivers of child with hypertension are at 4.3times(AOR,4.3, p=0.016)increased risk of having poorer quality of life(QoL) than those without. Conclusion: School performance and 'worry' are the most affected domains in child generic scale and family impact modules respectively. Low socioeconomic status, Steroid resistant nephrotic syndrome and hypertension are also associated with poorer HRQoL.
Journal of Urology, 2007
Background: We aimed to calculate the responsiveness and statistically prove the reliability of the Medical Outcomes Study Short Form Health Survey (SF-36) in a prospective cohort study. We investigated the profile of mid-term health-related quality of life (QOL) outcome assessments after surgery for cervical spondylotic myelopathy (CSM) and determined the consistency of the SF-36 assessments of neurological function. Methods: A total of 142 consecutive patients with CSM who underwent surgery were enrolled in the study. QOL and neurological assessments were evaluated before and at 3 months, 1 year, and more than 2 years postoperatively. We subsequently analyzed the reliability and responsiveness of the SF-36 and the QOL profile for its consistency regarding the neurological function assessment. Results: (1) Cronbach's α ranged from 0.73 (for role-emotional) to 0.85 (for physical function). The effect size ranged from 0.57 to 0.93 for SF-36's eight scales. Minimum clinically important differences (MCIDs) in the physical scores (PCS) and mental scores (MCS) were 5.52 and 3.43, respectively. (2) The scores for all SF-36 scale sections indicated that patients with CSM were significantly impaired compared with healthy adults. SF-36 PCS and MCS peaked at 17.7 and 18.9 months after surgery, respectively. (3) At 3 months after surgery, improvements in the modified Japanese Orthopaedic Association (mJOA) scores significantly correlated only with patients' physical function and bodily pain scores. At 1 year after surgery, improvements in the mJOA scores significantly correlated with physical function, general health, social function, and role-emotional. At the final follow-up, improvements in the mJOA scores significantly correlated with physical function, vitality, and role-emotional. Conclusions: SF-36 is reliable and has moderate responsiveness for evaluating patients with CSM, with MCID at 5.52 for the PCS and at 3.43 for the MCS. The preoperative QOL of the CSM patients was severely impaired compared with that of the normal population. Postoperatively, each SF-36 domain improved to a variable degree. During the early stage of recovery the mJOA score improvements correlated with SF-36's physical component domains, whereas during the later stages the improvements were associated with the mental component domains.
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...
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...
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.