Category: Methodology

Post-acute COVID syndrome (long COVID): What should radiographers know and the potential impact for imaging services

Abstract:

Objectives: The COVID-19 pandemic caused an unprecedented health crisis resulting in over 6 million deaths worldwide, a figure, which continues to grow. In addition to the excess mortality, there are individuals who recovered from the acute stages, but suffered long-term changes in their health post COVID-19, commonly referred to as long COVID. It is estimated there are currently 1.8 million long COVID sufferers by May 2022 in the UK alone. The aim of this narrative literature review is to explore the signs, symptoms and diagnosis of long COVID and the potential impact on imaging services.

Key findings: Long COVID is estimated to occur in 9.5% of those with two doses of vaccination and 14.6% if those with a single dose or no vaccination. Long COVID is defined by ongoing symptoms lasting for 12 or more weeks post acute infection. Symptoms are associated with reductions in the quality of daily life and may involve multisystem manifestations or present as a single symptom.

Conclusion: The full impact of long COVID on imaging services is yet to be realised, but there is likely to be significant increased demand for imaging, particularly in CT for the assessment of lung disease. Educators will need to include aspects related to long COVID pathophysiology and imaging presentations in curricula, underpinned by the rapidly evolving evidence base.

Implications for practice: Symptoms relating to long COVID are likely to become a common reason for imaging, with a particular burden on Computed Tomography services. Planning, education and updating protocols in line with a rapidly emerging evidence base is going to be essential.

Source: Alghamdi F, Owen R, Ashton REM, Obotiba AD, Meertens RM, Hyde E, Faghy MA, Knapp KM, Rogers P, Strain WD. Post-acute COVID syndrome (long COVID): What should radiographers know and the potential impact for imaging services. Radiography (Lond). 2022 Sep 12:S1078-8174(22)00119-5. doi: 10.1016/j.radi.2022.08.009. Epub ahead of print. PMID: 36109264; PMCID: PMC9468096. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9468096/ (Full text)

Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients

Abstract:

Introduction: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease with no validated specific and sensitive biomarker, and no standard approved treatment. In this observational study with no intervention, participants used a Fitbit activity tracker. The aims were to explore natural symptom variation, feasibility of continuous activity monitoring, and to compare activity data with patient reported outcome measures (PROMs).

Materials and methods: In this pilot study, 27 patients with mild to severe ME/CFS, of mean age 42.3 years, used the Fitbit Charge 3 continuously for six months. Patients wore a SenseWear activity bracelet for 7 days at baseline, at 3 and 6 months. At baseline and follow-up they completed the Short Form 36 Health Survey (SF-36) and the DePaul Symptom Questionnaire-Short Form (DSQ-SF).

Results: The mean number of steps per day decreased with increasing ME/CFS severity; mild 5566, moderate 4991 and severe 1998. The day-by-day variation was mean 47% (range 25%-79%). Mean steps per day increased from the first to the second three-month period, 4341 vs 4781 steps, p = 0.022. The maximum differences in outcome measures between 4-week periods (highest vs lowest), were more evident in a group of eight patients with milder disease (baseline SF-36 PF > 50 or DSQ-SF < 55) as compared to 19 patients with higher symptom burden (SF-36 PF < 50 and DSQ-SF > 55), for SF-36 PF raw scores: 16.9 vs 3.4 points, and for steps per day: 958 versus 479 steps. The correlations between steps per day and self-reported SF-36 Physical function, SF-36 Social function, and DSQ-SF were significant. Fitbit recorded significantly higher number of steps than SenseWear. Resting heart rates were stable during six months.

Conclusion: Continuous activity registration with Fitbit Charge 3 trackers is feasible and useful in studies with ME/CFS patients to monitor steps and resting heart rate, in addition to self-reported outcome measures.

Source: Rekeland IG, Sørland K, Bruland O, Risa K, Alme K, Dahl O, Tronstad KJ, Mella O, Fluge Ø. Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. PLoS One. 2022 Sep 19;17(9):e0274472. doi: 10.1371/journal.pone.0274472. PMID: 36121803. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0274472 (Full text)

Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Australian primary care patients: only part of the story?

Abstract:

Background: ME/CFS is a disorder characterized by recurrent fatigue and intolerance to exertion which manifests as profound post-exertional malaise. Prevalence studies internationally have reported highly variable results due to the 20 + diagnostic criteria. For Australia, the prevalence of ME/CFS based on current case definitions is unknown.

Objectives: To report prevalence of ME/CFS in patients aged ≥ 13 years attending Australian primary care settings for years 2015-2019, and provide context for patterns of primary care attendance by people living with ME/CFS.

Methodology: Conducted in partnership with the Patient Advisory Group, this study adopted a mixed methods approach. De-identified primary care data from the national MedicineInsight program were analyzed. The cohort were regularly attending patients, i.e. 3 visits in the preceding 2 years. Crude prevalence rates were calculated for years 2015-2019, by sex, 10-year age groups, remoteness and socioeconomic status. Rates are presented per 100,000population (95% confidence intervals (CI)). Qualitative data was collected through focus groups and in-depth 1:1 interview.

Results: Qualitative evidence identified barriers to reaching diagnosis, and limited interactions with primary care due to a lack of available treatments/interventions, stigma and disbelief in ME/CFS as a condition. In each year of interest, crude prevalence in the primary care setting ranged between 94.9/100,000 (95% CI: 91.5-98.5) and 103.9/100,000 population (95%CI: 100.3-107.7), equating to between 20,140 and 22,050 people living with ME/CFS in Australia in 2020. Higher rates were observed for age groups 50-59 years and 40-49 years. Rates were substantially higher in females (130.0-141.4/100,000) compared to males (50.9-57.5/100,000). In the context of the qualitative evidence, our prevalence rates likely represent an underestimate of the true prevalence of ME/CFS in the Australian primary care setting.

Conclusion: ME/CFS affects a substantial number of Australians. Whilst this study provides prevalence estimates for the Australian primary care setting, the qualitative evidence highlights the limitations of these. Future research should focus on using robust case ascertainment criteria in a community setting. Quantification of the burden of disease can be used to inform health policy and planning, for this understudied condition.

Source: Orji N, Campbell JA, Wills K, Hensher M, Palmer AJ, Rogerson M, Kelly R, de Graaff B. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Australian primary care patients: only part of the story? BMC Public Health. 2022 Aug 9;22(1):1516. doi: 10.1186/s12889-022-13929-9. PMID: 35945527. https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-13929-9 (Full text)

Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms

Abstract:

Purpose: To evaluate the psychometric properties of the patient-reported outcome measurement information system® (PROMIS) short forms for assessing sleep disturbance, sleep-related impairment, pain interference, and pain behavior, among adults with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Methods: Data came from the Multi-Site ME/CFS study conducted between 2012 and 2020 at seven ME/CFS specialty clinics across the USA. Baseline and follow-up data from ME/CFS and healthy control (HC) groups were used to examine ceiling/floor effects, internal consistency reliability, differential item functioning (DIF), known-groups validity, and responsiveness.

Results: A total of 945 participants completed the baseline assessment (602 ME/CFS and 338 HC) and 441 ME/CFS also completed the follow-up. The baseline mean T-scores of PROMIS sleep and pain measures ranged from 57.68 to 62.40, about one standard deviation above the national norm (T-score = 50). All four measures showed high internal consistency (ω = 0.92 to 0.97) and no substantial floor/ceiling effects. No DIF was detected by age or sex. Known-groups comparisons among ME/CFS groups with low, medium, and high functional impairment showed significant small-sized differences in scores (η2 = 0.01 to 0.05) for the two sleep measures and small-to-medium-sized differences (η2 = 0.01 to 0.15) for the two pain measures. ME/CFS participants had significantly worse scores than HC (η2 = 0.35 to 0.45) for all four measures. Given the non-interventional nature of the study, responsiveness was evaluated as sensitivity to change over time and the pain interference measure showed an acceptable sensitivity.

Conclusion: The PROMIS sleep and pain measures demonstrated satisfactory psychometric properties supporting their use in ME/CFS research and clinical practice.

Source: Yang M, Keller S, Lin JS. Assessing sleep and pain among adults with myalgic encephalomyelitis/chronic fatigue syndrome: psychometric evaluation of the PROMIS® sleep and pain short forms. Qual Life Res. 2022 Jul 27. doi: 10.1007/s11136-022-03199-8. Epub ahead of print. PMID: 35896905.  https://pubmed.ncbi.nlm.nih.gov/35896905/

The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and Related Diseases: A Protocol for the You + ME Registry Research Platform

Abstract:

Background: ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) is a chronic, complex, heterogeneous disease that affects millions and lacks both diagnostics and treatments. Big data, or the collection of vast quantities of data that can be mined for information, has transformed the understanding of many complex illnesses like cancer and multiple sclerosis, by dissecting heterogeneity, identifying subtypes, and enabling the development of personalized treatments. It is possible that big data can reveal the same for ME/CFS.

Objective: To describe the protocol for the You + ME Registry, present preliminary results related to participant enrollment and satisfaction, and discuss the limitations of the registry as well as next steps.

Methods: Solve M.E. developed and launched the You + ME Registry to collect longitudinal health data from people with ME/CFS, people with Long COVID (LC) and control volunteers using rigorous protocols designed to harmonize with other groups collecting data from similar groups of people.

Results: The Registry now has over 4,200 geographically-diverse participants (3,033 people with ME/CFS, 833 post-COVID, and 473 control volunteers) with an average of 72 new people registered every week. It has qualified as “great” using a Net Promotor Score, indicating registrants are likely to recommend to a friend. Analyses of collected data are currently underway and preliminary findings are expected in the near future.

Conclusions: The Registry is an invaluable resource because it integrates with a symptom tracking app, as well as a biorepository, to provide a robust and rich dataset that is available to qualified researchers. Accordingly, it facilitates collaboration that may ultimately uncover causes and help accelerate the development of therapies.

International registered report: DERR1-10.2196/36798.

Source: Ramiller A, Mudie K, Seibert E, Whittaker S. The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome and Related Diseases: A Protocol for the You + ME Registry Research Platform. JMIR Res Protoc. 2022 Jun 5. doi: 10.2196/36798. Epub ahead of print. PMID: 35816681. https://pubmed.ncbi.nlm.nih.gov/35816681/ https://preprints.jmir.org/preprint/36798/accepted (Full study available as PDF file)

Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis

Abstract:

A core criterion for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) is a substantial reduction in functioning from pre-illness levels. Despite its ubiquity in diagnostic criteria, there is considerable debate regarding how to measure this domain. The current study assesses five distinct methods for measuring substantial reductions. The analysis used an international, aggregated dataset of patients (N = 2,368) and controls (N=359) to compare the effectiveness of each method.

Four methods involved sophisticated analytic approaches using the Medical Outcomes Survey Short Form-36; the fifth method included a single self-report item on the DePaul Symptom Questionnaire (DSQ). Our main finding was that all methods produced comparable results, though the DSQ item was the most valid in differentiating patients from controls. Having a simple, reliable method to capture a substantial reduction in functioning has considerable advantages for patients and health care workers.

Source: Wiedbusch E, Jason LA. Comparing Operationalized Approaches for Substantial Reduction of Functioning in Chronic Fatigue Syndrome and Myalgic Encephalomyelitis. Arch Community Med. 2022;4(1):59-63. doi: 10.36959/547/653. Epub 2022 Apr 21. PMID: 35673386; PMCID: PMC9168545. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9168545/ (Full text)

Use of linked patient data to assess the effect of Long-COVID on system-wide healthcare utilisation

Abstract:

Background: Within the relatively early stages of the COVID-19 pandemic, there had been an awareness of the potential longer-term effects of infection (so called Long-COVID) but little was known of the ongoing demands such patients may place on healthcare services.

Objective: To investigate whether COVID-19 illness is associated with increased post-acute healthcare utilisation.

Method: Using linked data from primary care, secondary care, mental health and community services, activity volumes were compared across the 3 months preceding and proceeding COVID-19 diagnoses for 7,791 individuals, with a distinction made between whether or not patients were hospitalised for treatment. Differences were assessed against those of a control group containing individuals who had not received a COVID-19 diagnosis. All data were sourced from the authors’ healthcare system in South West England.

Results: For hospitalised COVID-19 cases, a statistically significant increase in non-elective admissions was identified for males and females <65 years. For non-hospitalised cases, statistically significant increases were identified in GP Doctor and Nurse attendances and GP prescriptions (males and females, all ages); Emergency Department attendances (females <65 years); Mental Health contacts (males and females ≥65 years); and Outpatient consultations (males ≥65 years).

Conclusion: There is evidence of an association between positive COVID-19 diagnosis and increased post-acute activity within particular healthcare settings. Linked patient-level data provides information that can be useful to understand ongoing healthcare needs resulting from Long-COVID, and support the configuration of Long-COVID pathways of care.

Source: Murch BJ, Hollier SE, Kenward C, Wood RM. Use of linked patient data to assess the effect of Long-COVID on system-wide healthcare utilisation. Health Inf Manag. 2022 May 25:18333583221089915. doi: 10.1177/18333583221089915. Epub ahead of print. PMID: 35615791. https://pubmed.ncbi.nlm.nih.gov/35615791/

Comparison of assessment scores for fatigue between multidimensional fatigue inventory (MFI-K) and modified chalder fatigue scale (mKCFQ)

Abstract:

Background: Because of the absence of biological parameters for fatigue, appropriate instruments for assessing the degree of fatigue are important in the diagnosis and management of people complaining of fatigue-like symptoms. This study statistically analyzed the fatigue scores from two typical questionnaire-based instruments: the Korean version of the Multidimensional Fatigue Inventory (MFI-K) and the modified Chalder Fatigue Scale (mKCFQ).

Methods: Seventy participants (males n = 40, females n = 30, median age 48 years old, range of 25-67) were grouped into three groups (‘mild’ = 20, ‘moderate’ = 42, and ‘severe’ = 8) according to self-reported fatigue levels using a 7-point Likert scale. The similarities and differences between two instrument-derived scores were analyzed using correlations (r) and multidimensional scaling (MDS).

Results: The total scores of the two assessments were significantly correlated (r = 75%, p < 0.001), as were the subscores (‘Total Physical fatigue’: r = 76%, p < 0.001, ‘Total Mental fatigue’: r = 56%, p < 0.001). Relative overestimation of the MFI-K (45.8 ± 11.3) compared to the mKCFQ (36.1 ± 16.2) was observed, which was especially prominent in the ‘mild’ group. The scores of the three groups were more easily distinguished by the mKCFQ than by the MFI-K. In terms of the five dimension scores, we found a higher correlation of the two assessments for ‘general fatigue’ (r = 79%, p < 0.001) and ‘physical fatigue’ (r = 66%, p < 0.001) than for the reductions in ‘motivation’ (r = 41%, p < 0.01) and ‘activity’ (r = 26%, p > 0.05).

Conclusions: Our results may indicate the usefulness of the two instruments, especially for the physical symptoms of fatigue (‘general’ and ‘physical’ fatigue). Furthermore, the MFI-K may be useful for conditions of moderate-to-severe fatigue, such as chronic fatigue syndrome, but the mKCFQ may be useful for all spectra of fatigue, including in subhealthy people.

Source: Lim EJ, Son CG. Comparison of assessment scores for fatigue between multidimensional fatigue inventory (MFI-K) and modified chalder fatigue scale (mKCFQ). J Transl Med. 2022 Jan 3;20(1):8. doi: 10.1186/s12967-021-03219-0. PMID: 34980164. https://pubmed.ncbi.nlm.nih.gov/34980164/

Assessment of systemic joint laxity in the clinical context: Relevance and replicability of the Beighton score in chronic fatigue

Abstract

Background: Persistent symptoms in patients with systemic joint laxity (SJL) are often equivalent with complications. Screening for SJL is an important part of the assessment of musculoskeletal phenotype. The common measuring tool, the Beighton score (BS), still has unclear evidence.

Objective: To assess the Beighton score in a clinical context for (1) ability to classify SJL as absent or present (criterion validity), and (2) interrater reliability (physician-physiotherapist), for a dichotomous cut-off (yes/no), as well as for interpretation in categories (no, some, clear SJL).

Methods: This real-world observational study included 149 consecutive patients seeking secondary care for investigation of possible myalgic encephalomyelitis/chronic fatigue syndrome. Assessment was done during a routine examination. Data were evaluated with Cohen’s kappa and Spearman’s rho.

Results: BS criterion validity showed poor agreement with the assessment of SJL: percentage agreement was 74 % and kappa 0.39 (3-cut level), 73 % and kappa 0.39/0.45 (4-/5-cut level). The best interrater reliability was moderate (rho 0.66) for interpretation in categories.

Conclusions: The BS alone was not a reliable proxy for SJL and should be supplemented with a targeted history. Nevertheless, its interrater reliability was acceptable, and the categorised score appears to have greater clinical relevance than the dichotomous score.

Source: Bernhoff G, Huhmar H, Käll LB. Assessment of systemic joint laxity in the clinical context: Relevance and replicability of the Beighton score in chronic fatigue. J Back Musculoskelet Rehabil. 2021 Dec 13. doi: 10.3233/BMR-210081. Epub ahead of print. PMID: 34957987. https://pubmed.ncbi.nlm.nih.gov/34957987/

mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites

Abstract:

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating disease which involves multiple body systems (e.g., immune, nervous, digestive, circulatory) and research domains (e.g., immunology, metabolomics, the gut microbiome, genomics, neurology). Despite several decades of research, there are no established ME/CFS biomarkers available to diagnose and treat ME/CFS. Sharing data and integrating findings across these domains is essential to advance understanding of this complex disease by revealing diagnostic biomarkers and facilitating discovery of novel effective therapies.

Methods: The National Institutes of Health funded the development of a data sharing portal to support collaborative efforts among an initial group of three funded research centers. This was subsequently expanded to include the global ME/CFS research community. Using the open-source comprehensive knowledge archive network (CKAN) framework as the base, the ME/CFS Data Management and Coordinating Center developed an online portal with metadata collection, smart search capabilities, and domain-agnostic data integration to support data findability and reusability while reducing the barriers to sustainable data sharing.

Results: We designed the mapMECFS data portal to facilitate data sharing and integration by allowing ME/CFS researchers to browse, share, compare, and download molecular datasets from within one data repository. At the time of publication, mapMECFS contains data curated from public data repositories, peer-reviewed publications, and current ME/CFS Research Network members.

Conclusions: mapMECFS is a disease-specific data portal to improve data sharing and collaboration among ME/CFS researchers around the world. mapMECFS is accessible to the broader research community with registration. Further development is ongoing to include novel systems biology and data integration methods.

Source: Mathur R, Carnes MU, Harding A, Moore A, Thomas I, Giarrocco A, Long M, Underwood M, Townsend C, Ruiz-Esparza R, Barnette Q, Brown LM, Schu M. mapMECFS: a portal to enhance data discovery across biological disciplines and collaborative sites. J Transl Med. 2021 Nov 8;19(1):461. doi: 10.1186/s12967-021-03127-3. PMID: 34749736. https://pubmed.ncbi.nlm.nih.gov/34749736/