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Table 2 Health-related quality of life assessment in children and adolescents with idiopathic nephrotic syndrome: the generic instruments and the significant findings

From: 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

Study (first author’s name and year of publication) Study aims HRQoL instruments Evaluated parameters Major findings
Rüth et al. [21] To evaluate QoL and psychosocial adjustment by standardized tests TNO-AZL Child Quality of Life Questionnaire
Child Behavior checklist
Teacher Report form
Child-and parent-rated QoL
Child’s psychosocial adjustment
Child-rated QoL = 1/7 (14.3%)
Parent-rated QoL = 4/7 (57.1%)
Impairment of the child's psychosocial adjustment at home and school
Selewski et al. [22] To evaluate the influence of disease duration on HRQoL and compare the differences in HRQoL in children with prevalent and incident INS
To compare the findings of the PROMIS and PedsQL instruments
PROMIS II instrument
Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales
Child-rated QoL in both instruments’ domains PROMIS scores significantly worse in prevalent than in incident INS for ‘pain interference’ and ‘peer relationships’ domains
PedsQL scores significantly worse in prevalent than incident INS for ‘social functioning’ and ‘school functioning’ domains
Rahman et al. [15] To evaluate the HRQoL in children with INS Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales
Pediatric Quality of Life Questionnaire for the nephrotic syndrome (parental proxy-report)
Child-and parent-rated QoL QoL significantly impaired, especially in physical and social summary scores
Agrawal et al. [17] To compare the HRQoL in children with INS and children with other chronic illnesses (controls) Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales Child-rated QoL Aggregate QoL scores in children with INS better than in those with other chronic illnesses
Khanjari et al. [23] To investigate the effect of blended training on HRQoL in children with INS Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales Child-rated QoL QoL scores increased in the intervention group compared to the control group after blended training
Roussel et al. [16] To describe HRQoL in children with SDNS or SRNS on oral immunosuppressive treatment or intravenous RTX in stable remission A 30-item standardized questionnaire with a global score of 0–100 Child-rated QoL High global QoL score in 'difficult-to-treat' INS patients in stable remission on oral immunosuppressive or RTX treatment
Troost et al. [24] To identify HRQoL profiles in children and adults with NS to improve the interpretability and clinical utility of PROMIS® PROMIS II instrument Child-and adult-rated QoL Complete proteinuria remission, reduction in symptoms, and shorter disease duration were significant predictors of better HRQoL profile membership
Solarin et al. [25] To assess HRQoL in children with idiopathic nephrotic syndrome Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales Child-and parent-rated QoL Good overall QoL in children with INS but lower QoL in those with SRNS, CKD, and prolonged duration of illness
Jabbar et al. [26] To assess HRQoL in children with idiopathic nephrotic syndrome about children with other chronic diseases Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales Child-rated QoL HRQOL scores in all domains were significantly higher in children with idiopathic nephrotic syndrome compared to those with chronic disease
Eid et al. [10] To evaluate HRQoL in children with idiopathic nephrotic syndrome compared to healthy children and children with chronic non-renal diseases Pediatric Quality of Life Inventory™ (PedsQL™) 4.0 Generic Scales
Generic Children's QoL Measure (GCQ)
Child-rated QoL Significantly higher mean PedsQL scores in the idiopathic nephrotic syndrome group compared to the chronic non-renal illness group but significantly lower compared to the healthy control group
Significantly higher mean GCQ scores in the idiopathic nephrotic syndrome group compared to the chronic non-renal illness group and healthy control group
  1. HRQoL, health-related quality of life; QoL, quality of life; TNO-AZL, The Netherlands Organization for Applied Scientific Research Academical Medical Center; PROMIS®, Patient-Reported Outcomes Measurement Information System®; SDNS, steroid-dependent nephrotic syndrome; SRNS, steroid-resistant nephrotic syndrome; RTX, rituximab; QoL on physical and emotional well-being, self-esteem, family, friends, school and disease; To predict HRQoL profile membership