Quality of Life in Neurological Disorders Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADL

Instrument Name: Quality of Life in Neurological Disorders Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADL

Abbreviation: Neuro-QoL Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADL

Points for Consideration:

Not recommended as potentially fit-for-purpose in a clinical trial

Description of Tool:

The Neuro-QoL Scale v1.1 - Pediatric Upper Extremity - Fine Motor, ADL scale is a PRO designed to measure upper extremity function in children aged 8-17 years with neurological conditions.

Minimum Qualification Required by COA Administrator: No degree requirement

Year: 2012

Objective of Development:

To monitor upper extremity function in children with neurological conditions who experience lifelong functional limitations

Population of Development: Age range (therapeutic indication):

8-17 years (Epilepsy, Generic for Nervous System Diseases)

Pediatric Population(s) in which COA has been used:

Nervous System Diseases; Musculoskeletal Diseases; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

COA type:

Number of Items 20 items

Mode of Administration:

Data Collection Mode:

Time for Completion: Not reported

Response Scales: 5-point verbal rating scale ranging from 0 "Not able to do" to 4 "With No trouble"

Summary of Scoring:

Available Scores:
Global Score ranging from 0 to 100

Weighting:
No

Score Interpretation:
Higher score = Better self-reported health

Evidence of Literature Review: Yes

Evidence of Instrument Review: Yes

Evidence of Clinical or Expert Input: Yes

Evidence of concept elicitation in target patient population: Yes

Evidence of a Saturation Grid: None identified

Evidence for Selection of Data Collection Method: None identified

Recall/Observation Period:

Evidence for Selection of Reponse Options: None identified

Evidence of cognitive interviewing of draft instrument in target patient population: Yes

Evidence of Preliminary Scoring of Items and Domains: Yes

Evidence related to respondent and administrator burden: None identified

Evidence of a Conceptual Framework: None identified

Evidence of an item-tracking matrix: None identified

Evidence related to item selection: Yes

Evidence of re-testing the final version: None identified

Internal consistency (Cronbach's alpha): Yes

Evidence of internal consistency:

Test-retest Reliability (ICC):

Lai JS (2015)

Intraclass Correlation Coefficient (ICC): 0.94
Was a definition of stability applied to identify stable patients: No
Time frame or interval between the two administrations: 7 days
Population/Disease: Children with epilepsy; n= 59

Inter-rater/ inter-interviewer reliability (kappa):

Not applicable

Evidence of test-retest or inter-rater reliability: Yes

Concurrent validity (convergent, divergent):

Lai JS (2015)

Correlation coefficient used: Spearman's correlation coefficient
Measure: PedsQL Core, PedsQL Physical Functioning, PedsQL Psychosocial Health, PedsQL School Functioning, PedsQL Social Functioning
Results:
Significant correlation was found between Neuro-QoL Upper Extremity and PedsQL Core, r= 0.41, p<0.01 Significant correlation was found between Neuro-QoL Upper Extremity and PedsQL Psychosocial Health, r= 0.38, p< 0.01 Significant correlation was found between Neuro-QoL Upper Extremity and PedsQL School Functioning, r= 0.30, p<0.05 Significant correlation was found between Neuro-QoL Upper Extremity and PedsQL Social Functioning, r= 0.46, p<0.001 Population/Disease: Children with epilepsy; n= 59 Correlation coefficient used: Spearman's correlation coefficient Measure: EQ-5D Index Results: Significant correlation was found between Neuro-QoL Upper Extremity and EQ-5D Index, r= 0.55, p< 0.001 Population/Disease: Children with epilepsy; n= 59 Correlation coefficient used: Spearman's correlation coefficient Measure: PedsQL Multidimensional Fatigue Scale (MFS) General Fatigue Results: Significant correlation was found between Neuro-QoL Upper Extremity and MFS General Fatigue, r= 0.31, p< 0.05 Population/Disease: Children with epilepsy; n= 59 Correlation coefficient used: Spearman's correlation coefficient Measure: PROMIS Global Health T-Score Results: Significant correlation was found between Neuro-QOL Lower Extremity (Mobility) and PROMIS Global Health T-Score r= 0.30, p<0.05 Population/Disease: Children with epilepsy; n= 59

Known-group validity:

Lai JS (2015)

Measure/Groups of patients: Patients taking anti-epilepsy drugs (AED) in moNotherapy (n= 39) and patients on polytherapy (n= 17)
A priori hypotheses: Not stated
Were hypotheses confirmed: Not applicable
Results: t-test
Patients on AED moNotherapy showed better Upper Extremity ratings than those on polytherapy (t= -2.12, p= 0.04)
Population/Disease: Patients on moNotherapy or polytherapy ; n= 55

Evidence of Translatability Assessment: None identified

Evidence related to missing data: None identified

Evidence for Selection of Recall Period: None identified

Evidence of Administration Instructions and Training Provided: None identified

Evidence of concurrent validity: Yes

Evidence of known-groups validity: Yes

Evidence of ability to detect change over time: None identified

Ability to detect change (Responsiveness):

None identified

Evidence of responder thresholds: None identified

Cella D, Nowinski C, Peterman A. The neurology quality-of-life measurement initiative. Arch Phys Med Rehabil. 2011 Oct;92(10 Suppl):S28-36. (https://www.archives-pmr.org/article/S0003-9993(11)00438-2/fulltext)

Lai JS, Nowinski C, Victorson D. Quality-of-Life Measures in Children with Neurological Conditions: Pediatric Neuro-Qol. Neurorehabilitation and Neural Repair, 26(1), 36-47 (https://journals.sagepub.com/doi/10.1177/1545968311412054)

Lai JS, Nowinski CJ, Zelko F. Validation of the Neuro-QoL measurement system in children with epilepsy. Epilepsy Behav. 2015 May;46:209-14 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458416/)

None identified

None identified

Original Language: English for the USA

Translations:
Polish
Norwegian
Italian
German
French
Czech
Spanish

Lai JS , Nowinski CJ , Victorson D , Bode R , Podrabsky T , McKinney N , Straube D , Holmes GL , McDonald CM , Henricson E , Abresch RT , Moy C , Cella D

David Cella
Department of Medical Social Sciences
Northwestern University
Chicago
IlliNois
USA
E-mail: d-cella@Northwestern.edu

Contact:
Health Measures
E-mail: help@healthmeasures.net and/or translations@HealthMeasures.net

Free access

Neuro-QoL measures are copyrighted. All English and Spanish version of Neuro-QoL are publicly available for use in one’s individual research, clinical practice, educational assessment, or other application without licensing or royalty fees. Commercial users must seek permission to use, reproduce, or distribute measures. Integration into proprietary techNology requires written permission. Please read the PROMIS Terms and Conditions of Use for more information

©2008-2013 David Cella and the PROMIS Health Organization on behalf of the National Institute for Neurological Disorders and Stroke (NINDS). Used with permission.

Review copy available on the Health Measures website (https://www.healthmeasures.net/explore-measurement-systems/neuro-qol/obtain-and-administer-measures)

None identified