Questionnaires and tools to assess ME/CFS symptoms or severity

2024-04-24T13:09:32Z

Burgermind:/* ME/CFS self-report tools */ added archived version for 404

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Many different '''questionnaires''', '''symptom scales''' and '''self-report tools''' can be used to measure the the severity or impact of particular [[ME/CFS]] symptoms, of ME/CFS, and the level of disability in ME/CFS patients.

Many questionnaires and symptom scales used for ME/CFS patients can also be used for patients with [[fibromyalgia]] or other [[chronic illness]]es, for example those that assess [[pain]], [[fatigue]], overall [[disability]] or physical health, but some are designed to assess the unique combination of symptoms found in [[myalgic encephalomyelitis]] or [[chronic fatigue syndrome]] for example [[post-exertional malaise]].

==ME/CFS self-report tools==
Commonly used self-report tools and questionnaires include:
*[[Bell CFIDS disability scale]]
*[[Chalder fatigue scale]]
*[[DePaul Pediatric Health Screening Questionnaire]] - for children and adolescents
*[[DePaul Post-Exertional Malaise Questionnaire]]
*[[DePaul Symptom Questionnaire]]<ref name="IOM2015-AppendixD">{{Cite book | last=Institute of Medicine | authorlink = Institute of Medicine | title = Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
|chapter=Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms|chapter-url=https://www.ncbi.nlm.nih.gov/books/n/nap19012/appD/?report=reader|pages=269-272
|location=Washington, DC|publisher=The National Academies Press | date = 2015 | url=https://www.ncbi.nlm.nih.gov/books/NBK284902/}}</ref>
*[https://www.hfme.org/themeabilityscale.htm The HFME Ability and Severity Scale] ([https://web.archive.org/web/20230623224527/www.hfme.org/themeabilityscale.htm archived version])

===Less commonly used ===
*[[AYME Functional Ability Scale]] - for children and adolescents
*[[Bansal Score Chart for ME/CFS]]
*[[Campbell CFS/Fibromyalgia Rating Scale]]
*[[CDC 2005 Symptom Inventory for CFS]]
*[[HFME 3 Part ME Ability and Severity Scale]]
*[[ME Association ME/CFS Disability Rating Scale]]
*[[Phoenix Rising Energy Index Scale]]
*[[Shepherd ME/CFS Disability Scale]]

==General self-report tools==
General self-report tools and questionnaires used in ME/CFS patients include:
*[[Borg CR-10]]
*[[Borg Rating of Perceived Exertion Scale]] (RPE scale)
*[[Energy Index Point Score]]
*[[Fatigue Severity Scale]]
*[[Fennell Phase Inventory]]
*[[Checklist Individual Strength]]
*[[Karnofsky Performance Scale]]
*[[Multidimensional Fatigue Inventory-20]]
*[[PROMIS F-SF]]
*[[Short Form 36-Item Health Survey]]
*[[Visual-analogue scale]]
*[[Widespread Pain Index]]
*[[International Symptom Scale]] (ICC)
*[[Functional Capacity Scale Definition]]
*[[Moss Ability Scale]] (original)
*[[Total Daily Symptom Score]] (TDSS)

==Suitability of scales for severe ME ==
Some scales have a ceiling effect or floor effect, where a large range of variation in ME/CFS cannot be distinguished between, leading to a cluster or very high or very low scores.{{citation needed | date = 2021}}

===Subjective and objective assessments ===
Symptom scales are usually '''subjective''' (based on the person's opinion) and so can be at risk of [[response bias]]. Symptom scales are a common form of [[Patient Rated Outcome Measure]] (PROM) used in clinical trials.

Symptom scales or other forms of self-assessment should be used together with [[:Category:Medical tests|'''objective''' measures]], e.g., school/work attendance record, [[Six-minute walk test|distance walked in 6 mins]], [[cardiopulmonary exercise test]] (CPET), pain medication consumption, or VO2 max.

==Notable studies ==
*2000, Fatigue rating scales: an empirical comparison<ref name="Taylor2000scales">{{Cite journal | last = Taylor | first = RR | authorlink = Renée Taylor | last2 = Jason | first2 = LA | author-link2 = Leonard Jason | first3 = A | last3 = Torres | title = Fatigue rating scales: an empirical comparison | journal = Psychol Med | volume =30 | issue = 4 | pages = 849-856 | url = https://www.cambridge.org/core/journals/psychological-medicine/article/abs/fatigue-rating-scales-an-empirical-comparison/020A228226165CD3BD3792055A05D7EA | doi = 10.1017/s0033291799002500 | pmid = 11037093 | date = 2000 }}</ref> - [https://www.cambridge.org/core/journals/psychological-medicine/article/abs/fatigue-rating-scales-an-empirical-comparison/020A228226165CD3BD3792055A05D7EA (Abstract)]
*2011, Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity<ref name="Fatigue Scales, 2011">{{Cite journal | last1 = Jason | first1 = LA | authorlink1 = Leonard Jason | last2 = Evans | first2 = M | authorlink2 = Meredyth Evans | last3 = Brown | first3 = M | authorlink3 = Molly Brown | last4 = Porter | first4 = N | authorlink4 = Nicole Porter | last5 = Brown | first5 = A | authorlink5 = Abigail Brown | last6 = Hunnell | first6 = J | authorlink6 = | last7 = Anderson | first7 = V | authorlink7 = | last8 = Lerch | first8 = A | authorlink8 = | title = Fatigue Scales and Chronic Fatigue Syndrome: Issues of Sensitivity and Specificity | journal = Disability Studies Quarterly: DSQ | volume = 31 | issue = 1 | page = 1375 | date = 2011 | pmid = 21966179 | pmc = PMC3181109 | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181109/ | doi = }}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3181109/ (Full text)]
*2014, The delayed fatigue effect in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)<ref name="Arroll, 2014">{{Cite journal | last1 = Arroll | first1 = M.A. | authorlink1 = | last2 = Attree | first2 = E.A. | authorlink2 = | last3 = O'Leary | first3 = J.M. | authorlink3 = | last4 = Dancey |first4 = C.P. | authorlink4 = | title = The delayed fatigue effect in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) | journal = Fatigue: Biomedicine, Health & Behavior | volume = 2 | issue = 2 | page = 57-63 | date = 2014| pmid = | url = https://www.researchgate.net/profile/Elizabeth-Attree/publication/263760410_The_Delayed_Fatigue_Effect_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_MECFS/links/55e0d6f508aecb1a7cc591b1/The-Delayed-Fatigue-Effect-in-Myalgic-Encephalomyelitis-Chronic-Fatigue-Syndrome-ME-CFS.pdf?origin=publication_detail | doi = 10.1080/21641846.2014.892755}}</ref> - [https://www.researchgate.net/profile/Elizabeth-Attree/publication/263760410_The_Delayed_Fatigue_Effect_in_Myalgic_Encephalomyelitis_Chronic_Fatigue_Syndrome_MECFS/links/55e0d6f508aecb1a7cc591b1/The-Delayed-Fatigue-Effect-in-Myalgic-Encephalomyelitis-Chronic-Fatigue-Syndrome-ME-CFS.pdf?origin=publication_detail (Full text)]
::Significant differences were found between pre- and post-test measures in three MFI sub-scales of fatigue (general, mental, and physical) and on the depression scale of the HADS. However, there were no significant changes in motivation, activity level, or self-reported anxiety scores.
*2016, Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome<ref name="Pendergrast, 2016">{{Cite journal | last1 = Pendergrast | first1 = Tricia | authorlink1 = | last2 = Brown | first2 = Abigail | authorlink2 = Abigail Brown | last3 = Sunnquist | first3 = Madison | authorlink3 = Madison Sunnquist | last4 = Jantke | first4 = Rachel L. | authorlink4 = Rachel Jantke | last5 = Newton | first5 = Julia L. | authorlink5 = Julia Newton | last6 = Strand | first6 = Elin Bolle | authorlink6 = Elin Bolle Strand | last7 = Jason | first7 = Leonard A | authorlink7 = Leonard Jason | title = Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome | journal = Chronic Illness| volume = 12 | issue = 4 | page = 292-307 | url = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ | pmid = 27127189 | pmc = PMC5464362 | date = 2016 | doi = 10.1177/1742395316644770}}</ref> [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5464362/ (Full text)]
*2016, The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome<ref name="Murdock, 2016">{{Cite journal | last1 = Murdock | first1 = KW | authorlink1 = | last2 = Wang | first2 = XS | authorlink2 = | last3 = Shi | first3 = Q | authorlink3 = | last4 = Cleeland | first4 = CS | authorlink4 = | last5 = Fagundes | first5 = CP | authorlink5 = | last6 = Vernon | first6 = Suzanne D. | authorlink6 = Suzanne Vernon| title = The utility of patient-reported outcome measures among patients with myalgic encephalomyelitis/chronic fatigue syndrome.| journal = Quality of Life Research | volume = 26 | issue = | pages = 913–921 | date = 2016 | pmid = 27600520 | pmc = PMC5336422| doi = 10.1007/s11136-016-1406-3 | url = https://link.springer.com/article/10.1007/s11136-016-1406-3}}</ref> - [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336422/ (Full Text)]
*2018, Operationalizing Substantial Reduction in Functioning Among Young Adults with Chronic Fatigue Syndrome<ref name="Gleason, 2018">{{Cite journal | last1 = Gleason | first1 = Kristen D. | authorlink1 = | last2 = Stoothoff | first2 = Jamie | authorlink2 = | last3 = McClellan | first3 = Damani | authorlink3 = | last4 = McManimen | first4 =Stephanie L. | authorlink4 = Stephanie McManimen | last5 = Thorpe | first5 = Taylor | authorlink5 = | last6 = Katz | first6 = Ben Z. | authorlink6 = Ben Katz | last7 = Jason | first7 =Leonard A. | author-link7 = Leonard Jason | title = Operationalizing Substantial Reduction in Functioning Among Young Adults with Chronic Fatigue Syndrome| journal = Int.J. Behav. Med | volume = 25 | issue = 4 | page = 448-455 | date = 2018| pmid = 29872989 | pmc = PMC7944646 | url = https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7944646/ | doi = 10.1007/s12529-018-9732-1}}</ref> - [https://link.springer.com/article/10.1007/s12529-018-9732-1 (Full text)]
::The four top performing subscales and their associated cutoffs were determined: Physical Functioning ≤ 80, General Health ≤ 47, Role Physical ≤ 25, and Social Functioning ≤ 50. Used in combination, these four cutoff scores were shown to reliably discriminate between the patients and controls in our sample of young adults
*2020, Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36<ref name="vanCampen-obj2020">{{Cite journal | last = van Campen | first = C. (Linda) M.C. | authorlink = Linda van Campen | last2 = Rowe | first2 = Peter C. | authorlink2 = Peter Rowe | last3 = Visser | first3 = Frans C. | authorlink3 = Frans Visser | date = Sep 2020 | title = Validation of the Severity of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome by Other Measures than History: Activity Bracelet, Cardiopulmonary Exercise Testing and a Validated Activity Questionnaire: SF-36|url=https://www.mdpi.com/2227-9032/8/3/273|journal=Healthcare|language=en|volume=8|issue=3|pages=273|doi=10.3390/healthcare8030273|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [https://www.mdpi.com/2227-9032/8/3/273 (Full text)]
::Symptoms limiting the test were exhaustion in all patients, muscle pain in 80% as one of the symptoms at the end of the test, and dizziness in 8%.

==See also ==
*[[:Category:Symptom scales|Symptom scales]] (category)
*[[Mild myalgic encephalomyelitis or chronic fatigue syndrome|Mild ME/CFS]]
*[[Moderate myalgic encephalomyelitis or chronic fatigue syndrome|Moderate ME/CFS]]
*[[Severe myalgic encephalomyelitis or chronic fatigue syndrome|Severe ME/CFS]]
*[[Very severe myalgic encephalomyelitis or chronic fatigue syndrome|Very severe ME/CFS]]
*[[Patient Rated Outcome Measure]]

==Learn more==

==References ==
{{Reflist}}

[[Category:Tests]]
[[Category:Symptom scales]]

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Questionnaires and tools to assess ME/CFS symptoms or severity