Pediatric Quality of Life (PedsQL) Inventory Generic Core Scales 4.0

Epilepsy: (Varni et al., 2019; pediatric patients: n = 221, mean age = 11.93 (3.77), age range = 5-18 years; parents of patients ages 2-18: n = 336)

• MCID for patient self-report = 8.80
• MCID for parent-proxy report = 5.92

Epilepsy: (Varni et al., 2019)

Mean and Standard Deviation for the PedsQL 4.0 Generic Core Scales in pediatric patients with epilepsy by report type

Epilepsy: (Varni et al., 2019)

• Poor interrater reliability between youth with epilepsy and their parents on the Cognitive Functioning Scale (ICC = 0.38)
• Adequate interrater reliability between patient self-report and parent proxy report (r = 0.46-0.74)

Epilepsy: (Varni et al., 2019)

• Excellent: Cronbach's alpha range from 0.88-0.96
  • Patients self-report Cronbach’s alpha = 0.88
  • Parent Proxy-Report Cronbach's alpha = 0.96

Epilepsy: (Varni et al., 2019)

• Patient self-report: adequate floor effects (0.5%, lower scores demonstrate worse cognitive functioning) and ceiling effects (10.9%, higher scores demonstrate better cognitive functioning)
• Parent proxy-report: adequate floor effects (5.1%) and ceiling effects (12.8%)

Cerebral Palsy: (Oeffinger et al., 2008; n = 381, mean age = 11.0 (SD = 4.4); Gross Motor Function Classification System (GMFCS) Levels I-III)

Minimum change scores needed for Minimum Clinically Important Difference (MCID) of medium effect size by PedsQL subscale

Mean and Standard Deviation on PedsQL for non-surgical group (n = 292) by PedsQL Scale and GMFCS level

Mean and Standard Deviation on PedsQL for Surgical group (n = 87) by PedsQL Scale and GMFCS level*

*Note: Insufficient numbers per group for Child PedsQL.

Cerebral Palsy: (Oeffinger et al., 2008; at baseline and follow-up an average of 1 year 5 months after surgical intervention)

• Significant mean change score of 8.6 (14.6) for improved group on Parent PedsQL Physical exceeds MCID scores for medium effect sizes, p < 0.02
• Significant mean change score of -7.9 (12.5) for declined group on Parent PedsQL Physical exceeds MCID scores for medium effect sizes, p < 0.04

Diabetes: (Hillard et al., 2013, children n = 4,582, parent n = 4,444; mean age 12.5 (4.7) years; Type 1 and Type 2 Diabetes; PedsQL Generic Core)

• Type 1 Diabetes
  • MCID for Parents of children with Type 1 Diabetes = 4.88
  • MCID for Youth with Type 1 Diabetes  = 4.72
• Type 2 Diabetes
  • MCID for parents of children with Type 2 Diabetes = 6.27
  • MCID for youth with Type 2 Diabetes = 5.41

Diabetes: (Hilliard et al., 2013)

Mean and Standard Deviation for Total Score on the PedsQL Generic Core by Report Type

Diabetes: (Hilliard et al., 2013)

• Adequate internal consistency of PedsQL total scores on youth report: Cronbach's alpha = 0.87
• Adequate internal consistency of PedsQL total scores on parent report: Cronbach's alpha = 0.88 

Diabetes: (Hilliard et al., 2013)

• Significant, positive changes in baseline scores for Youth and Parent reports on both the PedsQL Generic Core and Diabetes Module were found (p = <0.0001)

Cancer: (Varni et al., 1999; children n = 281, mean age = 11.78 years; parents n = 283; calculated SEM)

• SEM for self-report: 0.18
• SEM for Parent proxy: 0.17

Cancer: (Varni et al., 1999; calculated MDC)

• MDC for self-report: 0.50
• MDC for parent proxy: 0.48

Cancer: (Varni et al., 1999)

• Excellent internal consistency for patient report (Cronbach’s alpha = 0.93)
• Excellent internal consistency for parent report (Cronbach’s alpha = 0.93)

Convergent validity:

Cancer: (Varni et al., 1999)

• Adequate to Excellent convergent validity between Patient Report PedsQL Core Scales for Psychological and Social functioning and standardized psychosocial instruments (ICC = 0.32 – 0.63)

Discriminant validity:

Cancer: (Varni et al., 1999)

• Excellent discriminant validity between Patient Report PedsQL Physical functioning scale and standardized psychosocial instruments (ICC = 0.05 – 0.12)

Content validity supported through the development process. Supplied-response and generated-responses (open-ended) items were created based on an extensive search of the relevant literature, open-ended interviews with patients and their families, and discussions with pediatric healthcare professionals. The item pool was examined and further refined based on interviews with a new pool of patients, families, and healthcare professionals. (Varni et al., 1999)

Cancer: (Varni et al., 1999)

• Adequate: ceiling effects for PedsQL Core Total = 2.3-3.1%
• Excellent: No floor effects for PedsQL Core Total

Asthma: (Seid et al., 2010; Child Self-Report: healthy n = 245, asthma n = 198, mild asthma n = 56, moderate asthma n = 79, severe asthma n = 63; Parent Proxy Report: healthy n = 460, asthma n = 252, mild asthma n = 68, moderate asthma n = 103, severe asthma n = 81)

• SEM for Child self-report total: 6.12
• SEM for Parent proxy-report total: 5.84

Asthma: (Seid et al., 2010; calculated MDC)

• MDC for Child self-report: 16.93
• MDC for Parent proxy-report: 16.18

Asthma: (Seid et al., 2010)

• Healthy sample total score mean (SD): 80.39 (15.44)
• Asthma sample total score mean (SD): 71.81 (15.27)
• Asthma mild total score mean (SD): 77.64 (12.61)
• Asthma moderate total score mean (SD): 71.29 (14.54)
• Asthma severe total score mean (SD): 67.30 (16.80)

Asthma: (Seid et al., 2010)

• Excellent internal consistency for child self-report (Cronbach’s alpha = 0.84)
• Excellent internal consistency for parent proxy-report (Cronbach’s alpha = 0.82)

Convergent validity:

Asthma: (Seid et al., 2010)

• Adequate convergent validity between total scores on parent-proxy report and child self-report: (ICC = 0.47, p < 0.001)

Discriminant validity:

Asthma: (Seid et al., 2010)

• Discriminant validity total score child self-report:
  • Significant difference between asthma and healthy (p < .001, independent-sample t test)
  • Significant difference between mild and severe (p < .01, ANOVA with Tukey post hoc tests)
  • Significant difference between mild and moderate (p < .05, ANOVA with Tukey post hoc tests)
• Discriminant validity total score parent-proxy report:
  • Significant difference between asthma and healthy (p < .001, independent-sample t test)
  • Significant difference between mild and severe (p < .01, ANOVA with Tukey post hoc tests)

Asthma: (Seid et al., 2010)

• Effect sizes for patients who improved after 3 months (p < .001)
  • Large change for total child self-report: 0.58
  • Large change for total parent-proxy report: 0.62
• Effect sizes for patients who remained stable after 3 months (p < .001)
  • Large change for total child self-report: 0.75
  • Large change for total parent-proxy report: 0.71

Healthy Children and Children with Chronic Conditions: (Varni et al., 2003; Children n = 5,991; mean age = 7.9 (4.0), Parents n = 10,241)

• SEM for child self-report total score: 4.36
• SEM for parent proxy-report total score: 4.50

Healthy Children and Children with Chronic Conditions: (Varni et al., 2003; calculated MDC)

• MDC for child self-report total score: 12.09
• MDC for parent proxy-report total score: 12.47

Healthy Children and Children with Chronic Conditions: (Varni et al., 2003)

• MCID for child self-report total score: 4.36 score units
• MCID for parent proxy-report total score: 4.50 score units

Healthy Children and Children with Chronic Conditions: (Varni et al., 2003)

• Child self-report cut-off score = 69.7
• Parent proxy-report cut-off score = 65.4
• One SD below population mean = potential at risk status for impaired HRQOL (similar to children with a severe chronic health condition)

Psychiatric Disorders, Cancer, Diabetes: (Limbers et al., 2011; Healthy n = 1,453, mean age = 9.21 (4.46) years; ADHD and comorbid disorder n = 181, mean age = 11.08 (3.70) years; pediatric cancer n = 182, mean age = 8.22 (4.83) years; type 1 diabetes n = 320, mean age = 12.34 (3.94) years)

Mean (SD) of Total Score on PedsQL 4.0 Generic Core Scale by Report Type for Pediatric Patients with ADHD/Comorbid Psychiatric Disorders, Pediatric Cancer Patients on Treatment, and Pediatric Patients with Type 1 Diabetes

Healthy, Acutely and Chronically Ill Children: (Varni et al., 2001; children n = 963; mean age = 9.3 (4.37) years; parents n = 1,629)

Mean (SD) for Total Score on PedsQL by report type and illness level

Healthy UK and US Toddlers: (Buck, 2012; n = 256 (UK sample); mean age = 38 (10) months; age range = 2.0 to 4 years, 11 months; Toddler version of PedsQL)

Mean (SD) for parent proxy-report total score on PedsQL by sample type

Healthy and Chronically Ill(Varni et al., 2003)

PedsQL 4.0 Generic Core Total Scale Scores by demographics for Child Self-Report and Parent Proxy-Report

PedsQL 4.0 Generic Core Total Scale Scores for Healthy and Chronic Health Condition Samples by Report Type

*Identified by their parents as having 1 of the following conditions: asthma, diabetes, attention deficit hyperactivity disorder (ADHD), depression, or “other.”

Healthy, Psychiatric Disorders, Cancer, Diabetes: (Limbers, 2011; n = 179 (children); n = 181 (parents))

• Excellent internal consistency for total score child self-report: Cronbach’s alpha = 0.85
• Excellent internal consistency for total score parent proxy-report: Cronbach’s alpha = 0.92

Healthy, Acutely and Chronically Ill (Varni , 2001)

• Excellent internal consistency for Total Scale Score (Cronbach's alpha = 0.88 child, 0.90 parent)
• Excellent internal consistency for Physical Health Summary Score (Cronbach's alpha = 0.80 child, 0.88 parent)
• Excellent internal consistency for Psychosocial Health Summary Score (Cronbach's alpha = 0.83 child, 0.86 parent)

Healthy UK and US Toddlers (Buck, 2012)

• Excellent internal consistency for Total PedsQL Score and Psychosocial Summary subscale (Cronbach’s alpha = 0.86 and 0.82, respectively)
• Adequate internal consistency for:
  • Physical Health subscale (Cronbach’s alpha = 0.76)
  • Emotional Functioning subscale (Cronbach’s alpha = 0.76)
  • Social Functioning subscale (Cronbach’s alpha = 0.77)
• Poor internal consistency for Nursery Functioning subscale (Cronbach’s alpha = 0.58)

Healthy and  Chronically Ill (Varni et al., 2003)

• Excellent internal consistency for Total Scale Score (cronbach's alpha = 0.89 child self-report, 0.92 parent proxy-report)
• Adequate to Excellent internal consistency for Physical Health Summary Score (cronbach's alpha = 0.77 child self-report, 0.88 parent proxy-report)
• Excellent internal consistency for Psychosocial Health Summary Score (cronbach's alpha = 0.87 child self-report, 0.88 parent proxy-report)

Predictive validity:

Pediatric Inpatient Population (Desai et al., 2014; Children n = 359; Parents n = 4,637)

• A 10-point decrement in the PedsQL Total Score below the established community-based mean scores for the Child Self-Report was associated with:
  • A 15% increase in risk for length of stay (LOS) of 3 days or longer, p < 0.001.
  • An 8% increase in risk for 30 day unplanned readmissions, p < 0.01.
  • A 13% increase in risk for 30-day emergency department return visits, p < 0.001.

Convergent validity:

Healthy, Acutely and Chronically Ill Children (Varni et al., 2001; n = 963; mean age = 9.3 (4.37))

• Poor convergent validity between child self-report total score and care needed, school missed, work routine impact, and work concentration impact (r ranged from  -.28 to -.22)
• Adequate convergent validity between parent proxy-report total score and care needed, work missed, work routine impact, and work concentration impact (r ranged from  -.50 to -.29)
• Poor convergent validity between parent proxy-report total score and school missed (r = -.29)

Healthy, Psychiatric Disorders, Cancer, Diabetes (Limbers et al., 2011)

• Significant mean differences between total scores for ADHD/Comorbid Psychiatric Disorders patients and healthy patients for both child self-report and parent proxy-report (p< 0.001)

Healthy, Acutely and Chronically Ill Children (Varni et al., 2001; n = 963; mean age = 9.3 (4.37))

• The PedsQL distinguished between healthy children and pediatric patients with acute or chronic health conditions, was related to indicators of morbidity and illness burden, and displayed a factor-derived solution largely consistent with the a priori conceptually-derived scales.

Healthy and Chronically Ill Children (Varni et al., 2003)

• The PedsQL distinguished between healthy children and children with chronic health conditions (total score mean difference was 9.15 for the child self-report and 9.75 for the parent proxy report).

Healthy, Acutely and Chronically Ill Children (Varni et al., 2001)

• Excellent: No floor effects for both healthy and ill children for child self-report for Total score and Physical Health, Psychosocial Health, and Social Functioning subscales.
• Excellent: No floor effects for healthy children for parent proxy-report for Total score and Physical Health, Psychosocial Health, and Social Functioning subscales.
• Adequate floor effects for both healthy and ill children on Emotional Functioning and School Functioning subscales of child self-report (0.3 - 0.8%) and the Emotional Functioning and School Functioning subscales of the parent proxy-report (0.1 – 0.7%).
• Adequate floor effects for ill children on the Total Score and Physical Health, Psychosocial Health, and Social Functioning subscales of the parent proxy-report (0.2 - 2.3%).  
• Adequate ceiling effects for both healthy and ill children for the Total Score and Psychosocial Health subscale on both the child self-report and the parent proxy-report (1.9 - 13.8%).
• Adequate ceiling effects for ill children for the Physical Health and School Functioning subscales on the child self-report (13.0 - 13.1%) and the Physical Health, Emotional Functioning, and School Functioning subscales on the parent proxy-report (15.5 – 19.5%).
• Poor ceiling effects for both healthy and ill children on the Emotional Functioning and Social Functioning subscales of the child self-report (22.4 - 47.1%) and the Social Functioning subscale of the parent proxy-report (34.4 - 58.1%).
• Poor ceiling effects for healthy children on the Physical Health (25.8%) and School Functioning (23.1%) subscales of the child self-report (2 - 47.1%) and the Physical Health (39.6%), Emotional Functioning (29.5%), and School Functioning (34.5%) subscales of the parent proxy-report).
• The ceiling effects were in the expected direction, with healthy children and their parents reporting more ceiling effects than children with health conditions.

Healthy UK and US Toddlers (Buck, 2012)

• Excellent: no floor effects
• Adequate ceiling effects:
  • 11% for Emotional Functioning subscale
  • 8% for Psychosocial Summary subscale
• Poor ceiling effects:
  • 37% for Physical Health subscale
  • 39% for Social Functioning subscale
  • 57% for Nursery Functioning subscale

Children with Psychiatric Problems: (Bastiaansen et al., 2004; n = 310; mean age = 11.3 (3.18) years; age range = 6 - 18.6 years)

Mean and Std. Deviation for PedsQL Total Score (TS) on Child Self-Report and Parent Proxy Report

ADHD: (Varni et al., 2006; ADHD children n = 72; ADHD parent n = 69; Healthy children n = 3,256; Healthy parent n = 3,251)

Mean and Std. Deviation for PedsQL Total Score (TS) on Child Self-Report and Parent Proxy Report for ADHD and Healthy Samples

Psychiatric Disorders, Cancer, Diabetes: (Limbers et al., 2011; comparison between child self-report and parent proxy-report)

• Poor interrater reliability for Total Score (ICC = 0.24)

ADHD: (Varni et al., 2006; comparison between child self-report and parent proxy-report)

• Adequate interrater reliability (ICC = 0.71)

ADHD: (Varni et al. 2006; n = 72 (children); n = 69 (parent))

• Excellent internal consistency for total score child self-report (Cronbach’s alpha = 0.92)
• Excellent internal consistency for total score parent proxy-report (Cronbach’s alpha = 0.92)

Convergent Validity:

Children with Psychiatric Problems: (Bastiaansen et al., 2004)

• Excellent convergent validity between total PedsQL score for child self-report and Youth Self-Report (r = -0.73)
• Adequate convergent validity with total PedsQL score for parent proxy-report and Youth Self-Report (r = -0.39)

ADHD: (Varni et al., 2006; ADHD children n = 72; ADHD parents n = 69; Known Groups Method)

• Large effect size of d = 1.12 for differences in total score child self-report for ADHD, cancer, cerebral palsy, and healthy samples
• Moderate effect size of d = 0.64 for differences in total score parent proxy-report for ADHD, cancer, cerebral palsy, and healthy samples

ADHD/Comorbid Psychiatric Disorders (Limbers et al., 2011; children n = 179; parents n = 181)

• Excellent: No floor or ceiling effect for total score on child self-report
• Excellent: No floor effect for total score on parent proxy report.
• Adequate: Ceiling effect = 0.5% for total score on parent proxy-report