Report Viewer

NINDS CDE Notice of Copyright
Pediatric Quality of Life Inventory Neuromuscular Module
Availability
Please visit this website for more information about the instrument: Pediatric Quality of Life Inventory Neuromuscular Module
 
For Conditions of use, contact James W. Varni, jvarni@tamu.edu
Classification
Exploratory: Myotonic Dystrophy (DM)
Short Description of Instrument
The PedsQL_3.0 Neuromuscular Module is a 25-item scale that encompasses three scales: (1) About My/My Child's Neuromuscular Disease (17 items, disease process and associated symptomatology), 2) Communication (3 items, patient's ability to communicate with health care providers and others about his/her illness), and 3) About Our Family Resources (5 items, family financial and social support systems).
 
The PedsQL_ 3.0 Neuromuscular Module Scales are comprised of parallel child self report and parent proxy-report formats for children ages 5 to 18 years and a parent proxy report format for children ages 2 to 4 years.
Comments/Special Instructions
The PedsQL™ Neuromuscular Module is a specific module of the PedsQL™ www.pedsQL.org. The PedsQL™ Neuromuscular Module is available for online distribution for unfunded users on the general PedsQL™ page.  
Existing versions include the Acute and Standard versions for Toddlers (2-4 years of age), Young Children/Child (5-7 years of age), Children/Child (8-12 years of age), Teens/Teen (13-18 years of age), Young Adults/Young Adult (18-25 years of age) and Adult (>26 years of age). (Varni, 1998)
Scoring and Psychometric Properties
Scoring: Based on a 5-point Likert scale; 0 (Never) to 4 (Almost always) or 0 (Not al all) to 4 (a lot) for the young children report version. Scores are transformed on a scale from 0 to 100. Summary score ranging from 0 - 100 can be calculated. The higher the score indicates higher health related quality of life.
 
Psychometric Properties: In a study by Davis and colleagues (2010) internal consistency reliability coefficients (ICCs) for the Neuromuscular Model exceeded or approached the minimum relialbilty standard of 0.70 required for group comparisons. The Child Self-Report ICCs for test-retest reliability were: Total Score = 0.59, About My Neuromuscular Disease = 0.48, Communication = 0.48 and About Our Family Resources = 0.64.  While the Parent-Proxy Report ICCs for test-retest reliability were: Total Score = 0.75, About My Child's Neuromuscular Disease = 0.75, Communication = 0.80 and About Our Family Resources = 0.79. (Davis et al., 2010)
Rationale/Justification
Strengths: Well validated in the DMD and SMA patient populations.
 
Weaknesses: Instrument is specific to neuromuscular diseases.
References
Key References:
Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care. 1999 Feb;37(2):126-39.
 
Varni JW (1998) Pediatric Quality of Life Inventory™ 3.0 Neuromuscular Module (PedsQL™ 3.0 Neuromuscular Module) Accessed 03 July 2023 from: https://eprovide.mapi-trust.org/instruments/pediatric-quality-of-life-inventory-3.0-neuromuscular-module.
 
Additional References:
Davis SE, Hynan LS, Limbers CA, Andersen CM, Greene MC, Varni JW, Iannaccone ST. The PedsQL in pediatric patients with Duchenne muscular dystrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Neuromuscular Module and Generic Core Scales. J Clin Neuromuscul Dis. 2010 Mar;11(3):97-109.
 
Iannaccone ST, Hynan LS, Morton A, Buchanan R, Limbers CA, Varni JW; AmSMART Group. The PedsQL™ in pediatric patients with Spinal Muscular Atrophy: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Generic Core Scales and Neuromuscular Module. Neuromuscul Disord. 2009; 19(12):805-812.
 
 
Document last updated October 2024