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Pediatric Quality of Life Inventory, Multidimensional Fatigue Scale
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Author: James W. Varni,
Supplemental: Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS)
Exploratory: Mitochondrial Disease (Mito)
Short Description of Instrument
The PedsQL (Pediatric Quality of Life Inventory) is a modular instrument designed to measure health related quality of life (HRQOL) in children and adolescents ages 2-18 years. It can be completed in 1-2 minutes. Composed of 18 items, the instrument possesses three fatigue subscales: general, sleep and rest, and cognitive. Both self-report and parental-report versions have been created to address issues of cross-informant discrepancies.
The PedsQL has been used in pediatric chronic illness in general, pediatric arthritis, SLE, fibromyalgia, and CFS.
Specific population where scale is used (includes age and criteria if applicable)
Parent version: 2-18 years old.
Child version: 5-18 years old, and adult.
Scoring and Psychometric Properties
Scoring: Each item is scored on a 5-point Likert scale (0 = never, 1 = almost never, 2 = sometimes, 3 = often, 4 = almost always). Items are reverse scored and linearly transformed into a 0-100 scale (0 = 100, 1 = 75, 2 = 50, 3 = 25, 4 = 0) so that higher scores indicate less fatigue. A summary score ranges from 0 to 100.
Psychometric Properties: This scale has excellent internal consistency (Cronbach's alpha 0.77 to 0.94), and good correlation with overall HRQOL scales like the PedsQL, and the ability to distinguish sick from healthy children. Very few items are not filled in by respondents.
Construct validity determined by correlations with general HRQOL scales; construct validity determined by comparing scores across groups known to have more or less fatigue (pediatric rheumatic conditions versus healthy children).
Mitochondrial Disease-Specific:
Strengths: Fatigue is often a dominant symptom for mitochondrial disease patients; thus, a scale to record fatigue could have heuristic value for both patients and healthcare workers. The PedsQL MFS has been validated and applied extensively for many non-mitochondrial disease pediatric disorders in which chronic fatigue may manifest, including type 1 DM, rheumatological disease, obesity and cancer. The applicable age range is broad, being from 2-18y for the parent version and 5 to adulthood for the child version. Young children (ages 5-7) can point to faces that match levels of severity/frequency of a given symptom. There is a corresponding parent report for each pediatric age range beyond 4y; from 2-4y, only the parents are queried. Each survey is brief and should take, at most, a few minutes for either parent or child to complete. Surveys are scored using a Likert scale from 0-4 in most cases.
Weaknesses: The age range excludes patients <2y. However, many mitochondrial disease patients show signs consistent with fatigue (weakness, floppiness, etc.) before age 2 and many interventional trials would likely seek to enroll patients as early as possible to intervene before significant, irreversible damage occurs. Domains queried are too limited and do not address major signs and symptoms common to mitochondrial disease patients, e.g., seizures, neurocognitive deficits and GI/neuromuscular complications. Most, if not all, the age-dependent scales depend on a child with cognitive abilities greater than are present in many or most mitochondrial disease patients. The scale relies on recall over a 1 or 4 week period, which can lead to recall errors and is discouraged by the FDA in designing tools used as outcome measures in RCTs. These last 2 issues are considered to be the major limitations of the survey when used in mitochondrial disease.
Strengths: This is a brief scale that takes only a minute or two to complete and does not tax patients excessively. It has excellent reliability, content and construct validity, and a high correlation with other HRQOL measures. It has been found to be feasible in pediatric fibromyalgia and CFS and distinguishes these populations from healthy controls.
Weaknesses: The scale asks about important components of the ME/CFS definition: (a) limitations in overall function due to fatigue ("I feel too tried to do things that I like to do"; "I feel too tired to spend time with my friends"), (b) unrefreshing sleep ("I feel tired when I wake up in the morning"), (c) cognitive fatigue ("It is hard for me to keep my attention on things"; "It is hard for me to think quickly") but does not assess post-exertional fatigue or malaise.
Key Reference:
Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL in pediatric cancer: reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002 Apr 1;94(7):2090-106.
Additional References:
Gordijn M, Cremers EM, Kaspers GJ, Gemke RJ. Fatigue in children: reliability and validity of the Dutch PedsQL™ Multidimensional Fatigue Scale. Qual Life Res. 2011 Sep;20(7):1103-8.
Panepinto JA, Torres S, Bendo CB, McCavit TL, Dinu B, Sherman-Bien S, Bemrich-Stolz C, Varni JW. PedsQL™ Multidimensional Fatigue Scale in sickle cell disease: feasibility, reliability, and validity. Pediatr Blood Cancer. 2014 Jan;61(1):171-7.
Varni JW, Burwinkle TM, Szer IS. The PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: reliability and validity. J Rheumatol. 2004 Dec;31(12):2494-500.
Varni JW, Limbers CA. The PedsQL Multidimensional Fatigue Scale in young adults: feasibility, reliability and validity in a University student population. Qual Life Res. 2008 Feb;17(1):105-14.
Varni JW, Limbers CA, Bryant WP, Wilson DP. The PedsQL Multidimensional Fatigue Scale in type 1 diabetes: feasibility, reliability, and validity. Pediatr Diabetes. 2009 Aug;10(5):321-8.
Varni JW, Limbers CA, Bryant WP, Wilson DP. The PedsQL multidimensional fatigue scale in pediatric obesity: feasibility, reliability and validity. Int J Pediatr Obes. 2010;5(1):34-42.
Mitochondrial Disease-Specific References: No published articles using this scale in mitochondrial disease participants, but a study in young patients with citrin deficiency used the scale in patient and parents:
Okano Y, Kobayashi K, Ihara K, Ito T, Yoshino M, Watanabe Y, Kaji S, Ohura T, Nagao M, Noguchi A, Mushiake S, Hohashi N, Hashimoto-Tamaoki T. Fatigue and quality of life in citrin deficiency during adaptation and compensation stage. Mol Genet Metab. 2013 May;109(1):9-13.
Document last updated March 2024
Recommended Instrument for
ME/CFS, Mito