Evidence map›Paper›PMID 37698999›Full record

ArticlePloS one2023

Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.

Mary D Slavin, Hannah M Bailey, Emily J Hickey, Ananya Vasudevan, Aileen Ledingham, Linda Tannenbaum, Lucinda Bateman, David L Kaufman, Daniel L Peterson, Ilene S Ruhoy and 3 more

Open access · goldAbstract read
In one paragraph

Article in PloS one, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed
1.6field-weighted citation impact, top 18% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

6 citing papers in PubMed, 7 citations in OpenAlex.

  1. Review
  2. Review
  3. Review
  4. Article
  5. Article
  6. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors at 7 institutions in 1 country.

Mary D SlavinDepartment of Health Law Policy and Management, Boston University School of Public Health, Boston, Massachusetts, United States of America.ORCID 0000-0003-1288-4280
Hannah M BaileyDepartment of Health Law Policy and Management, Boston University School of Public Health, Boston, Massachusetts, United States of America.
Emily J HickeyUniversity Center for Excellence in Developmental Disabilities, Waisman Center, University of Wisconsin-Madison, Madison, Wisconsin, United States of America.ORCID 0000-0002-9526-4468
Ananya VasudevanDepartment of Health Law Policy and Management, Boston University School of Public Health, Boston, Massachusetts, United States of America.
Aileen LedinghamDepartment of Health Law Policy and Management, Boston University School of Public Health, Boston, Massachusetts, United States of America.
Linda TannenbaumOpen Medicine Foundation, Agoura Hills, California, United States of America.
Lucinda BatemanBateman Horne Center of Excellence, Salt Lake City, Utah, United States of America.
David L KaufmanCenter for Complex Diseases, Mountain View, California, United States of America.
Daniel L PetersonSierra Internal Medicine, Incline Village, Nevada, United States of America.
Ilene S RuhoyMount Sinai South Nassau, Neurology, Chiari/EDS Center, Oceanside, New York, United States of America.ORCID 0000-0001-7154-8522
David M SystromBrigham and Women's Hospital, Lung Center, Boston, Massachusetts, United States of America.
Donna FelsensteinMassachusetts General Hospital, Boston, Massachusetts, United States of America.
Lewis E KazisDepartment of Health Law Policy and Management, Boston University School of Public Health, Boston, Massachusetts, United States of America.
Boston University · USBateman Horne Center · USBrigham and Women's Hospital · USHarvard University · USSierra Nevada College · USSouth Nassau Communities Hospital · USUniversity of Wisconsin–Madison · US

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element Repository. This study reviewed ME/CFS CDEs item content.

methodsInclusion criteria for CDEs (measures recommended for ME/CFS) analysis: 1) assesses symptoms; 2) developed for adults; 3) appropriate for patient reported outcome measure (PROM); 4) does not use visual or pictographic responses. Team members independently reviewed CDEs item content using the World Health Organization International Classification of Functioning, Disability and Health (ICF) framework to link meaningful concepts.

results119 ME/CFS CDEs (measures) were reviewed and 38 met inclusion criteria, yielding 944 items linked to 1503 ICF meaningful concepts. Most concepts linked to ICF Body Functions component (b-codes; n = 1107, 73.65%) as follows: Fatiguability (n = 220, 14.64%), Energy Level (n = 166, 11.04%), Sleep Functions (n = 137, 9.12%), Emotional Functions (n = 131, 8.72%) and Pain (n = 120, 7.98%). Activities and Participation concepts (d codes) accounted for a smaller percentage of codes (n = 385, 25.62%). Most d codes were linked to the Mobility category (n = 69, 4.59%) and few items linked to Environmental Factors (e codes; n = 11, 0.73%). DISCUSSION: Relatively few items assess the impact of ME/CFS symptoms on Activities and Participation. Findings support development of ME/CFS-specific PROMs, including items that assess activity limitations and participation restrictions. Development of psychometrically-sound, symptom-based item banks administered as computerized adaptive tests can provide robust assessments to assist primary care providers in the diagnosis and care of patients with ME/CFS.

Indexed as

Cognitive DysfunctionFatigue Syndrome, ChronicAdultCommon Data ElementsFatigueHumansPain

Identifiers

PMID37698999
PMCPMC10497138
OpenAlexW4386645833

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.