The immediate impact of the COVID-19 pandemic on motor neuron disease services and mortality in Scotland

This brief report presents a snapshot of the impact that the COVID-19 pandemic has had on NCD services in the Region of the Americas It represents the views and perspectives of the national health authorities responsible for overseeing the governmental NCD programs during a period of 4 weeks in May 2020, at a time when the Region of the Americas was considered the epicenter of the global COVID-19 pandemic


Dear Sirs,
As of August 2020, more than 800,000 deaths worldwide have been attributed to COVID-19, of which > 41,000 have been in the United Kingdom and 2494 in Scotland [1]. People with MND (pwMND) may be particularly vulnerable. We completed a population-based analysis of the Scottish MND Register, CARE-MND [2] and a clinician survey, to measure the impact of the pandemic on (1) diagnostic rate, (2) mortality rate, and, (3) delivery of services.
To investigate the impact of the pandemic on care delivery, we undertook a structured online survey of MND healthcare professionals focussing on their access to diagnostics and interventions; the survey comprised multiple choice and free text questions.
The number of new diagnoses remained constant after 2016 (range 42-45). Two pwMND, both with progressive muscular atrophy, died with confirmed or suspected COVID-19. One person had an ALSFRS-R 36/48 in July 2020, did not use non-invasive ventilation and died unexpectedly. The other person had an ALSFRS-R of 20/48 in January 2020 and used non-invasive ventilation continuously.
Clinicians additionally reported 70-90% of pwMND were shielding, and that pwMND expressed heightened anxiety of being exposed to COVID-19, experienced difficulties in receiving support from professional carers and family, felt loneliness, and fears of being denied treatment.
Our study is the first to demonstrate at a national level that rates of new MND diagnoses and all-cause mortality in pwMND have thus far been unaffected by COVID-19. Shielding recommendations by Scottish government may have contributed to the absence of excess mortality. Evaluation of shielding justifies further study including comparison with healthcare systems that did not shield. Comparative international data on mortality and morbidity in pwMND has yet to be published.
Notably, we observed a spike in mortality in 2018, which may be linked to a higher than usual rate of new diagnoses in 2015.
Our data suggest respiratory function tests, non-invasive ventilation and gastrostomy are the worst affected services.
Preparations for further waves of COVID-19 should prioritize maintenance of these. The adverse impact of COVID-19 on longer-term quality of life, carer burden, morbidity and mortality in this vulnerable group requires longitudinal evaluation.