Tag: pediatric ME/CFS assessment

Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study

Abstract:

Objective: Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) in children and young people (CYP) is a little-understood condition which significantly impacts education, development and quality of life. We used data from a population-wide surveillance study to explore the screening investigation, referral and management of suspected cases of paediatric severe ME/CFS.

Methods: A British Paediatric Surveillance Unit (BPSU) study reported cases of CYP with suspected severe ME/CFS between February 2018 and February 2019. Paediatricians reporting cases to BPSU and allied healthcare professionals in two large specialist paediatric ME/CFS centres were invited to complete questionnaires for CYP meeting the surveillance case definition. The study focused primarily on CYP with confirmed severe ME/CFS and the extent to which their care met NICE (The National Institute for Health and Care Excellence) recommendations but also considered separately those with probable or possible severe ME/CFS.

Results: This study includes a total of 92 CYP with suspected severe ME/CFS; 33 meeting criteria for severe ME/CFS and an additional 59 classified as probable or possible severe ME/CFS. For 16 possible cases, incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe ME/CFS diagnosis. Only 21 of 33 (64%) confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. Of the management provided, the most frequent approaches were medication (67%), activity management (61%) and physiotherapy (61%). Domiciliary assessments and support, and social services referrals were received by 12% and 6% of confirmed severe cases. Similar proportions of management approaches were seen in probable/possible severe ME/CFS.

Conclusion: Full investigation is frequently incomplete in CYP with suspected severe ME/CFS and recommendations for referral and management are poorly implemented, in particular the needs of CYP who are unable to leave their home might be poorly met.

Source: Royston AP, Burge S, Idini I, Brigden A, Pike KC. Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study. BMJ Paediatr Open. 2024 Mar 7;8(1):e002436. doi: 10.1136/bmjpo-2023-002436. PMID: 38453418. https://bmjpaedsopen.bmj.com/content/8/1/e002436 (Full text)

Pediatric and Adult Patients with ME/CFS following COVID-19: A Structured Approach to Diagnosis Using the Munich Berlin Symptom Questionnaire (MBSQ)

Abstract:

Purpose A subset of patients with post-COVID-19 condition (PCC) fulfill the clinical criteria of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). To establish the diagnosis of ME/CFS for clinical and research purposes, comprehensive scores have to be evaluated.

Methods We developed the Munich Berlin Symptom Questionnaires (MBSQs) and supplementary scoring sheets (SSSs) to allow for a rapid evaluation of common ME/CFS case definitions. The MBSQs were applied to young patients with chronic fatigue and post-exertional malaise (PEM) who presented to the MRI Chronic Fatigue Center for Young People (MCFC). Trials were retrospectively registered (NCT05778006, NCT05638724).

Results Using the MBSQs and SSSs, we report on ten patients aged 11 to 25 years diagnosed with ME/CFS after asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19. Results from their MBSQs and from well-established patient-reported outcome measures indicated severe impairments of daily activities and health-related quality of life.

Conclusions ME/CFS can follow SARS-CoV-2 infection in patients younger than 18 years, rendering structured diagnostic approaches most relevant for pediatric PCC clinics. The MBSQs and SSSs represent novel diagnostic tools that can facilitate the diagnosis of ME/CFS in children, adolescents, and adults with PCC and other post-viral syndromes.

What is known ME/CFS is a frequent debilitating illness. For diagnosis, an extensive differential diagnostic workup is required and the evaluation of clinical ME/CFS criteria. ME/CFS following COVID-19 has been reported in adults but not in pediatric patients younger than 19 years of age.

What is new We present novel questionnairs (MBSQs), as tools to assess common ME/CFS case definitions in pediatric and adult patients with post-COVID-19 condition and beyond. We report on ten patients aged 11 to 25 years diagnosed with ME/CFS following asymptomatic SARS-CoV-2 infection or mild to moderate COVID-19.

Source: Laura C. Peo, Katharina Wiehler, Johannes Paulick, Katrin Gerrer, Ariane Leone, Anja Viereck, Matthias Haegele, Silvia Stojanov, Cordula Warlitz, Silvia Augustin, Martin Alberer, Daniel B. R. Hattesohl, Laura Froehlich, Carmen Scheibenbogen, Lorenz Mihatsch, Rafael Pricoco, Uta Behrends. Pediatric and Adult Patients with ME/CFS following COVID-19: A Structured Approach to Diagnosis Using the Munich Berlin Symptom Questionnaire (MBSQ). medRxiv 2023.08.23.23293081; doi: https://doi.org/10.1101/2023.08.23.23293081 https://www.medrxiv.org/content/10.1101/2023.08.23.23293081v1.full-text (Full text)

Investigating the factors associated with meaningful improvement on the SF-36-PFS and exploring the appropriateness of this measure for young people with ME/CFS accessing an NHS specialist service: a prospective cohort study

Abstract:

Objectives: Paediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is relatively common and disabling, but little is known about the factors associated with outcome. We aimed to describe the number and characteristics of young people reaching the 10-point minimal clinically important difference (MCID) of SF-36-Physical Function Subscale (SF-36-PFS), and to investigate factors associated with reaching the MCID.

Design: Prospective observational cohort.

Setting: A specialist UK National Health Service (NHS) ME/CFS service, Southwest England. Recruitment between March 2014 and August 2015.

Participants: 193 eligible patients with ME/CFS aged 8 to 17 years reported baseline data. 124 (65%) and 121 (63%) with outcome data at six- and 12-months, respectively.

Outcome measures: SF-36-PFS (primary outcome). Chalder Fatigue Questionnaire, school attendance, visual analogue pain scale, Hospital Anxiety and Depression Scale, Spence Young people Anxiety Scale, Clinical Global Impression scale, and EQ-5D-Y (secondary)

Results: At six-months 48/120 (40%) had reached the MCID for SF-36-PFS. This had increased to 63/117 (54%) at 12-months. On the CGI, 77% and 79% reported feeling either a little better, much better, or very much better. Those with worse SF-36-PFS at baseline assessment were more likely to achieve the MCID for SF-36-PFS at six-months (OR 0.97, 95% CI 0.96 to 0.99, p-value 0.003), but there was no evidence of effect at 12-months (OR 0.98, 95% CI 0.97 to 1.00, p-value 0.038). No other factors at baseline were associated with the odds of reaching the MCID at six-months. However, at 12-months there was strong evidence of an effect of pain on MCID (OR 0.97, 95% CI 0.95 to 0.99, p-value 0.001), and SF-36-PFS on MCID (OR 0.96, 95% CI 0.94 to 0.98, p-value 0.001).

Conclusions: 40% and 54% of young people reached the MCID at 6 and 12 months respectively. No factors at assessment (other than SF-36-PFS at six-months, and pain and SF-36-PFS at 12-months) are associated with MCID of SF-36-PFS at either six-, or 12- months. Further work is needed to explore the most appropriate outcome measure for capturing clinical meaningful improvement for young people with ME/CFS.

Source: Gaunt, D. M., Brigden, A. L. C., Metcalfe, C., Loades, M., & Crawley, E. M. (Accepted/In press). Investigating the factors associated with meaningful improvement on the SF-36-PFS and exploring the appropriateness of this measure for young people with ME/CFS accessing an NHS specialist service: a prospective cohort study. BMJ Open. https://research-information.bris.ac.uk/en/publications/investigating-the-factors-associated-with-meaningful-improvement-