Impact of the covid-19 pandemic on amyotrophic lateral sclerosis care in the UK

Figures & data

Table 1 Study design for surveys 1, 2 and 3.

	Target population	Eligibility criteria	Time period of questioning	Survey distribution period	Questions	Data
Survey 1	plwALS	>18 years ALS Diagnosis	03/2020 − 12/2020	September 2020 –December 2020 (12 weeks)	Open and Closed	Quantitative and qualitative
Survey 2	HCP	HCP supporting plwALS in the UK	07/2020 − 10/2020	October 2020 (2.5 weeks)	Open and Closed	Quantitative and qualitative
Survey 3	ALS Care Center	Care center representative	03/2020 − 06/2020	June2020–August 2020 (6 weeks)	Closed	Quantitative

Table 2 Summary findings from surveys 1 and 2.

		Quantitative	Qualitative
Keeping safe	PlwALS	A large proportion of patients opted to Shield (n = 46, 88%).	PlwALS reported that they had been avoiding public places even after the end of the shielding period. Some plwALS explained that it was not always possible to socially distance, especially if they were dependent on carers.
	HCPs	HCPs highlighted that face-to-face clinical appointments were avoided in order to minimize risk of infection for plwALS (n = 33, 56.9%)	HCPs reported that they had minimized contact with patients to reduce potential transmission of Covid-19. PlwALS were also described as reluctant to see HCPs face-to-face both at their home and in public spaces (e.g. hospitals).
Negative emotions	PlwALS	The majority of plwALS felt worried about contracting Covid19 (n = 46, 92%).	PlwALS expressed fear toward the Covid-19 virus and described feeling isolated, angry and frustrated because of the lack of social contact.
	HCPs	N/A	HCPs described being concerned about the impact that Covid-19 has had on service provision (e.g. delaying tests) and worrying about the negative impact on patient care.
Losses	PlwALS	N/A	PlwALS reported that they had lost or missed activities, people and opportunities due to the pandemic which had resulted in them feeling like they are not living their life to the full.
	HCPs	N/A	HCPs reported that because patients were reluctant to come to hospital, they were missing out on opportunities such as having clinical tests (e.g. respiratory function tests) and specialist consultations.
Delivering care	PlwALS	The most significant changes were face-to-face appointments, which were largely replaced with remote consultations including telephone (n = 31, 69%) and video (n = 13, 29%). ALS-related appointments were also disrupted or disrupted such as breathing tests (n = 13, 42%), respiratory support (n = 2, 12%) and gastrostomy procedures (n = 2, 17%).	PlwALS reported that they had experienced disrupted care as a result of the COVID-19 pandemic. The disturbances included longer waiting times, not being able to see HCPs face-to-face and delayed diagnosis. PlwALS reported that it was easier to communicate in person, especially if they had communication difficulties such as dysarthria. Furthermore, remote consultations could be challenging when patients were not familiar with technology or had trouble with internet connection.
	HCPs	Reports of delays and changes to appointments were reported in the HCP survey. E.g. Some HCPs could only offer virtual appointments for gastrostomy care (n = 22, 30.1%).	HCPs reported feeling worried about the impact of Covid-19 on the delivery of care for plwALS. HCPs reported that it was easier to communicate in person and telephone consultations are not appropriate for patients with communication difficulties. Furthermore, remote consultations could be challenging with regards to use of technology. HCPs stressed the importance of having an adequate supply of PPE and guidelines in order to deliver good care during the pandemic.
Alternative care delivery in a pandemic	PlwALS	Patient respondents reported communication with healthcare professionals in relation to their ALS during the pandemic. Contact with an MND specialist/neurologist (n = 30, 67%), occupational therapist (n = 30, 64%) and GP (n = 28, 62%) were most frequently reported.	PlwALS expressed a need for more frequent contact from HCPs to provide reassurance. Respondents described a preference toward in-patient services, face-to-face contact and home visits for optimal care.
	HCPs	Only a small number of HCPs were provided additional training to care for plwALS during the pandemic (n = 5, 6.8%)	HCPs thought alternative modes of communication should be used to accommodate people’s needs and preferences. Respondents stressed the importance of being able to adopt new service models and to have adequate funding to enable services to provide best care. HCPs also highlighted the need to have an adequate supply of PPE.

Table 3 Recommendations; lessons learnt for promoting effective ALS care provision during a pandemic.

Theme	Recommendations	Potential solutions
Keeping safe	HCPs/services should identify plwALS who may be clinically vulnerable e.g. those with respiratory impairment and advise how to minimize risk.	Services should conduct a review of all cases and identify those at specific additional risk due to a pandemic and contact the patient, wider multidisciplinary and primary care teams about the risk and mitigations to be taken. As part of the multidisciplinary team discussion a plan to ensure continuity of ALS care should be agreed.
Negative emotions and losses	HCPs/services should support plwALS regarding their concerns about safety risk and their care by providing detailed information and reassurance about the pandemic and the care they will continue to receive.	HCPs/services should develop and proactively provide ALS patient-centered information with signposting details to support services when restrictions are in place.
Delivering care	There is a need for bespoke services and adapting to the needs of each individual patient. Consequently, HCPs/services should use additional modes of communication when appropriate to support the needs of plwALS.	Make use of user-centered telehealth software. During video consultations, use the chat function.
	HCPs/services should offer face-to-face consultations when a patient needs testing that cannot be done at home.	Consider using drive through testing (blood tests, respiratory gases etc) to avoid plwALS having to go into hospital. Conduct risk/benefit analysis of face to face encounters in the context of a pandemic.
Alternative care delivery in a pandemic	HCPs should receive appropriate training to ensure there are adequate numbers of trained staff caring for plwALS who are confident and competent caring for plwALS during a pandemic.	Services should develop online courses, webinars and websites in order to provide additional training to HCPs (e.g. on using remote technologies, supporting plwALS at home).
	HCPs/services should evolve and adopt new service delivery models and resources to accommodate changing healthcare and unprecedented situations.	Services should focus on developments such as remote pulmonary function testing which can help to monitor plwALS remotely and safely. Services should also consider adopting domiciliary or drive through testing services (e.g. blood tests and respiratory gases) to avoid the need for plwALS to attend hospital for these tests.
	HCPs/services should allow home visits when necessary so they can pick up on physical issues without patients needing to attend the hospital.	HCPs/services should offer home visits when necessary whilst wearing full personal protective equipment.
	Services should receive adequate funding to accommodate the need for more trained staff and for home visits etc.	Services should be commissioned appropriately.
	HCPs/services should have an adequate supply of personal protective equipment and guidelines in order to deliver good care.	Services should provide correct personal protective equipment and clear guidelines for staff caring for plwALS.
	HCPs/services should use a multidisciplinary approach to provide optimal care for plwALS.	HCPs should have regular multidisciplinary team meetings (virtual or face-to- face) and provide email/phone support to other HCPs.

HCPs: Healthcare professionals; PlwALS: people living with amyotrophic lateral sclerosis.