Myalgic Encephalomyelitis—Chronic Fatigue Syndrome Common Data Element item content analysis, 2023, Slavin, Bateman, Systrom et al.

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; David M. Systrom; Donna Felsenstein; Lewis E. Kazis

Introduction
Myalgic 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.

Methods
Inclusion 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.

Results
119 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.

Link | PDF (PLOS ONE)

 

Haven't yet read the paper properly but on a quick skim it doesn't look like they discussed if or how to include this new questionnaire in the Common Data Elements PROMs list:
https://www.s4me.info/threads/norwa...ctioning-in-pwme-cfs-open-for-feedback.24995/

 

Have now read this and the short and unsurprising summary is this: the PROMs currently available for ME/CFS research aren't good enough

The slightly longer version:

The authors analysed Patient Reported Outcome Measures (PROMs) held in the ME/CFS Common Data Elements Repository (CDEs).

To do this they matched the concepts asked about in the PROMs against the concepts listed in the WHO International Classification of Functioning, Disability and Health (ICF) categories. They chose the ICF because it's an "internationally recognized framework"

Result 1: There are categories in the ICF which would be appropriate to measure in ME/CFS but which are largely ignored by the currently available PROMs

Result 2: There are categories in the ICF which superficially appear to measure relevant factors in ME/CFS but which are off-target on closer inspection

Result 3: The ICF does not have any suitable categories for PEM

So clearly there's work to be done. Or maybe there is work being done? Does anyone know what the bolded (by me) section below refers to?

Oh, and this is a nice touch: