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Pediatric Quality of Life Inventory (PEDSQL)
Availability
Please visit this websites for more information about the instrument: PedsQL or ePROVIDE
Classification
Supplemental- Highly Recommended: Mitochondrial Disease (Mito) and Sport-Related Concussion (SRC) Subacute (after 72 hours to 3 months)
Supplemental: Cerebral Palsy (CP), Duchenne Muscular Dystrophy (DMD), Friedreich's Ataxia (FA), Headache, Spinal Muscular Atrophy (SMA), SRC Acute (time of injury until 72 hours) and Persistent/Chronic (3 months and greater post concussion), Stroke, Acute, Moderate and Mild Traumatic Brain Injury (TBI), and Epidemiology TBI
 
Exploratory: Myotonic Dystrophy (DM)
Short Description of Instrument
Description: Developed in the US in 1998, the PedsQL 4.0 Measurement Model is a modular approach to measuring health-related quality of life (HRQOL) in healthy children and adolescents and those with acute and chronic health conditions. The PedsQL Measurement Model covers 4 domains: physical (8 items), emotional (5 items), social (5 items) and school (5 items). It provides a total scales score from 23 items, of which 8 are for physical health summary score and 15 are for psychosocial health summary score.
 
The instrument takes 4 minutes to complete and is translated in multiple international languages including broadcast Spanish. It is usable for parents/guardians of children between the ages of 2 to 18 years (in 4 age groups) and child versions are available for all age groups except the 2–4 years old.
 
Comments/Special Instructions
N/A
Scoring and Psychometric Properties
Scoring: The instrument contains 23 items encompassing four areas: physical, emotional, social, and school. Participants respond on a Likert scale from 0 to 4. Items are reverse scored and linearly transformed to a 0 to 100 scale, with higher converted scores indicating better HRQL. The instrument provides four domain scores, two summary scores (physical and psychosocial functioning), and a total HRQL score.  
 
0-100 scale with scores near 0 representing lower QOL and scores near 100 representing higher QOL. Individual subscale scores can also be calculated for each of the four areas of functioning: physical, emotional, social, and school. To score, items are transferred to a 0-100 scale, i.e., 0=100, 1=75, 2=50, 3=25, 4=0. Scores are then averaged to obtain a final score between 0-100.
 
Psychometric Properties: Well-standardized and validated, good reliability and sensitivity to change, good correlations with other standardized measures of disease severity in disease-specific modules.
 
Reliability: Over all 23 multi-item scales had internal consistency reliabilities averaging 0.80. The total scale score had a=0.88 for child and a=0.90 for parent report.
 
Validity of scales: Distinguishes between healthy children and children with acute and chronic health conditions; distinguishes disease severity within a chronic health condition. Headache specific data is also supportive of the reliability (internal consistency and test-retest) and validity (criterion related, convergent, known-groups, and responsiveness to intervention) of the PedsQL 4.0 within a pediatric headache sample.
Rationale/Justification
Particular Features: PedsQL Disease-Specific Modules are available for asthma, arthritis, cancer, cardiac disease, and diabetes.
 
Limitations:
Nothing specific noted in publications on the studies listed above, although a reliable mitochondrial disease-specific module does not exist. PedsQL 4.0 has been described as one of the three available general measures of QOL in childhood and adolescence with adequate psychometric properties for application in clinical research (NINDS Headache CDEs). It is an overall quality of life tool that does not focus on either epilepsy or its treatment.
 
Advantages:
PEDSQL is short, easy to complete, and is widely used and validated in US. It also has many translations. Lastly, it is a broad measurement of function collected in under 4 minutes
References
Key Reference:
Varni JW, Seid M, Kurtin PD. PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory Version 4.0 generic core scales in healthy and patient populations. Med Care. 2001;38(8):800-812.
 
Varni JW, Limbers CA. The pediatric quality of life inventory: Measuring pediatric health-related quality of life from the perspective of children and their parents. Pediatr Clin North Am. 2009;56(4):843-863.
 
Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr. 2003;3(6):329-341.
 
Headache-Specific Reference:
Connelly M, Rapoff MA. Assessing health-related quality of life in children with
recurrent headache: reliability and validity of the PedsQLTM 4.0 in a pediatric headache sample. J Pediatr Psychol. 2006;31(7):698-702.
 
Stroke-Specific References:
Abecassis IJ, Nerva JD, Barber J, Rockhill J, Ellenbogen RG, Kim LJ, Sekhar LN.Toward a comprehensive assessment of functional outcomes in pediatric patients with brain arteriovenous malformations: the Pediatric Quality of Life Inventory. J Neurosurg Pediatr. 2016 Nov;18(5):611-622. Epub 2016 Aug 19.
 
Friefeld S, Yeboah O, Jones JE, deVeber G.Health-related quality of life and its relationship to neurological outcome in child survivors of stroke. CNS Spectr. 2004 Jun;9(6):465-75.
 
Ghotra SK, Johnson JA, Qiu W, Newton AS, Rasmussen C, Yager JY Health-related quality of life and its determinants in paediatric arterial ischaemic stroke survivors. Arch Dis Child. 2018 Oct;103(10):930-936.
 
Smith SE, Vargas G, Cucchiara AJ, Zelonis SJ, Beslow LA. Hemiparesis and epilepsy are associated with worse reported health status following unilateral stroke in children. Pediatr Neurol. 2015 Apr;52(4):428-34