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Pediatric Quality of Life Inventory, Multidimensional Fatigue Scale
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Please visit this website for more information about the instrument: Pediatric Quality of Life Inventory, Multidimensional Fatigue Scale
Author: James W. Varni, PROinformation@mapi-trust.org
Classification
Supplemental: Myalgic encephalomyelitis/Chronic fatigue syndrome (ME/CFS)
Exploratory: Mitochondrial Disease
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 subscales: general fatigue, sleep and rest fatigue, and cognitive fatigue. Both self-report and parental-report versions have been created to address issues of cross-informant discrepancies.
 
It has been used in pediatric chronic illness in general, pediatric arthritis, SLE, fibromyalgia, CFS.
Specific population where scale is used (include age and criteria if applicable) Parent version: 2-18 years old.
Child version: 5-18 years old, and adult
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 – 100.
Rationale/Justification
Mitochondrial Disease-Specific:
 
Strengths: Fatigue is often a dominant symptom for mt disease pts; thus, a scale to record fatigue could have heuristic value for both patients and healthcare worker. The PedsQL MFS has been validated and applied extensively for many non-mt 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 2-18yrs for the parent version and 5-adulthood for the child version. For young children, (ages 5-7), subjects 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 4yrs; from 2-4yrs, 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 pts <2yrs. However, many MT disease patients show signs c/w 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. Most, if not all, the age-dependent scales depend on a child with cognitive abilities greater than are present in many or most mt disease pts. 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. I consider these last 2 issues to be the major limitations of the survey when used in Mitochondrial Disease.
 
Limitations:
1.) Age range doesn’t extend below 2 years; however, many mt disease pts are diagnosed <2yrs of age and most interventional trials would likely seek to enroll pts as early as possible to intervene before significant, irreversible damage;
2.) Domains queried too limited and do not address major S/S common to mt pts, e.g., seizures, neurocognitive deficits and GI/neuromuscular complications;
3.) Scale implicitly relies on greater cognitive capacity than present in many/most mt disease children;
4.) Scale relies on recall over week-month, however, FDA discourages such scales b/o of recall errors
5.) Validated in a variety of pediatric diseases areas and effective across a large age range. Fatigue is a common complaint for patients with mitochondrial disease.
 
ME/CFS-Specific:
Advantages: 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.
 
Limitations: 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.
 
Psychometric Properties: This scale has excellent internal consistency (Cronbach's alpha 0.77 – 0.94), and good correlation with overall HRQOL scales like the Peds QL, 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).
References
Varni JW, Limbers CA, Bryant WP, Wilson DP. The PedsQL Multidimensional Fatigue Scale in type 1 diabetes: feasibility, reliability, and validity. Pediatr Diabetes. 2009;10(5):321–328.
 
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;17(1):105–114.
 
Varni JW, Burwinkle TM, Szer IS. The PedsQL Multidimensional Fatigue Scale in pediatric rheumatology: reliability and validity. Rheumatol.2004;31(12):2494–2500.
 
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;94(7):2090–2106.
 
Varni JW, Limbers CA, Bryant WP, Wilson DP. The PedsQL multidimensional fatigue scale in pediatric obesity: feasibility, reliability and validity. J Pediatr Obes. 2010;5(1):34–42.
 
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;20(7):1103–1108.
 
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;61(1):171–177.
 
Mitochondrial Disease-Specific: No published articles using this scale in mitochondrial disease subjects, but a study in young patients with citrin deficiency used 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;109(1):9–13.
Recommended Instrument for
ME/CFS, Mito
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