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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 Inventoryâ„¢ (PedsQLâ„¢) 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 Inventoryâ„¢ (PedsQLâ„¢) 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 Inventoryâ„¢ (PedsQLâ„¢) 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 Inventoryâ„¢ (PedsQLâ„¢) 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 Inventoryâ„¢ (PedsQLâ„¢) 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 Inventoryâ„¢ (PedsQLâ„¢) 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 Inventoryâ„¢ (PedsQLâ„¢) 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