Patient Perceptions on the Virtual Amyotrophic Lateral Sclerosis Clinic during COVID-19

Patients with amyotrophic lateral sclerosis (ALS) and their caregivers often attend specialized multidisciplinary ALS clinics, where multiple physicians and allied healthcare professionals deliver and coordinate care. ¹ The management of patients in such a multidisciplinary clinic (MDC) is considered as one of the best practice recommendations for ALS care in Canada. ² There is a recognized burden of fatigue, travel, out-of-pocket expenses, and time to attend in-person outpatient care, which is greater for ALS patients. ³ Virtual care (VC) has the potential to address some of this burden. VC is defined as any remote interaction between patients and healthcare providers using any form of communication or information technology (e.g. telephone, video conference, email, or text messaging) to deliver care. ⁴ In line with the widespread adoption of VC in Canada during the COVID-19 pandemic, the ALS MDC (affiliated with Queen’s University in Kingston, Ontario) transitioned to broader utilization of VC. ⁵ Recent literature suggests the feasibility of VC in ALS clinics, along with potential cost savings and better patient experience. ³ This paper explores the benefits and challenges of utilizing virtual MDCs for ongoing ALS care and contributes to ongoing research exploring accessible ALS care in and beyond the pandemic.

We used a case study research design to provide a generalizable, but also a complex portrayal of patient and caregiver experiences of in-person and virtual MDCs. ⁶ In a collaboration between clinicians at Providence Care Hospital and Kingston Health Sciences Centre, the Kingston ALS MDC (in-person and virtual) is undertaken at one site by a team of healthcare professionals from Neurology, Respirology, Physical Medicine & Rehabilitation/Physiatry, Palliative Care, Respiratory Therapy, Physiotherapy, Occupational Therapy, Speech–Language Pathology, and nursing. ALS patients who completed at least one virtual MDC between March and August 2020 were approached regarding interest in study participation. If the patient could not participate in the interview, we invited a caregiver who had experienced a virtual ALS MDC with the patient to participate. This study is approved by the Queen’s University’s Health Sciences and Affiliated Teaching Hospitals Research Ethics Board.

Between March 2020 and August 2020, two study team members conducted semi-structured interviews using an audio recorder over the phone. Based on initial interest, we invited 20 patients to participate. Thirteen individuals initially wished to participate. However, 1 withdrew and 1 participant expired before data collection. Eleven individuals (7 patients and 4 caregivers) participated in the study. A hired transcriptionist transcribed 11 interviews verbatim. The study team also collected the medical and sociodemographic profiles of each participant. Two study team members analyzed the 11 transcripts iteratively using NVivo 10 software. We used a thematic analysis approach to examine patient and caregiver experiences of virtual MDC. Two team members generated initial codes and themes. After coding every third interview, the research team reviewed the initial codes and took notes on major recurring themes. Following initial coding, the researchers convened to review and establish main themes and sub-themes. All sociodemographic and medical details of the patients are presented in Table 1.

Table 1: Sociodemographic profile of the participants and the frequency of in-person and virtual care visits

1PA= 1 person assist; ADLs = activities of daily living; 4ww = 4 wheeled walker; NIV = non-invasive ventilation.

Note: Urban (Outside of Kingston): The Kingston Health Sciences Centre has a large catchment area within southeastern Ontario that services patients who live in smaller urban areas (designated as “urban” by Statistics Canada) outside of Kingston.

Overall, participants expressed that the virtual MDC was useful as it was key to their ability to receive ongoing care during the COVID-19 pandemic. Three major themes emerged from the study (Table 2). First, the virtual clinic increased comfort and provided logistical benefits for patients by reducing travel, costs, and fatigue. Second, the virtual clinic offered ongoing ALS care in a safe manner, reducing exposure risk to COVID-19. Third, while patients identified the benefits of virtual MDCs, in-person MDCs often remained the preferred mode of ALS care for some.

Table 2: Summary of themes with quotes from participants

In Canada, specialized MDCs are the standard of care in ALS management as they confer several care benefits, including the convenience of a single integrated clinic, increased use of adaptive equipment and treatment interventions, as well as improved quality of life and prolonged survival. ^2,7 Participants expressed travel to in-person MDCs was no longer viable because it was too exhausting or costly. In contrast, participants acknowledged that VC reduced fatigue because patients were able to rest immediately after long MDC sessions. VC also eliminated costs related to travel and parking. This benefit is particularly salient given the geography of Canada and the long distances rural and remote residents travel to receive in-person ALS multidisciplinary care, with specialized MDCs located in relatively few urban centers. Most of our participants drove at least 1 h (one-way) to attend their MDC (Table 1). VC can maintain continuity of care via remote monitoring of symptoms and provision of care without the need for travel. ⁸

While the COVID-19 pandemic has presented unprecedented challenges for neuromuscular clinicians, providers have been able to make management recommendations by observing the condition of the patient by video conference. ³ Patients in our study reported a high level of satisfaction with the virtual during the COVID-19 pandemic. All participants felt that virtual ALS MDCs allowed them to receive ongoing care in a safe manner. Participants reported less anxiety as they did not have to worry about unnecessary exposure to COVID-19 that could exacerbate their existing conditions (Table 1).

Notwithstanding the benefits of the virtual MDC, patients may prefer in-person care. In our study, half of the participants stated that they still preferred in-person MDCs due to a combination of technological problems, an impersonal feeling associated with virtual encounters, and the lack of physical examination. A successful virtual visit session relies on strong digital literacy, access to the Internet and technology, which may differ due to age, geography, education, and income. ⁹ Multiple ALS-specific care endpoints require in-person assessments (e.g. pulmonary function tests). Also, the utility of virtual assessments in detecting relatively subtle/minor ALS disease progression and eliciting timely interventions is not validated. Therefore, while virtual MDCs may be an easier, less burdensome alternative to providing care, it may not always be preferable. This creates important implications for how to deliver patient-centered care as the convenience and cost-effective aspects of the virtual MDCs will remain even after the COVID-19 pandemic.

This pilot project adds to the body of literature exploring how VC could increase healthcare access for ALS patients. ^3,8,10 The results from our study are a starting point for further exploration to optimize ALS patient care. A mixed-methods approach incorporating quantitative methods (e.g. caregiver burden scores, patient-reported outcomes, clinical outcomes) would have further bolstered the study outcomes. As a patient’s ALS disease course progresses and as the pandemic resolves, there may be longitudinal changes in patients’ perceptions of VC. The cross-sectional nature of this study’s data is a limitation. The perceptions captured in this study do not necessarily correlate with adequate and timely ALS care delivery as recommended by the Canadian guidelines. ²

Our findings indicate that virtual ALS MDC may alleviate some of the barriers to ALS care, but in-person clinics may be more preferable in certain contexts. Future studies should examine longitudinal changes in patient and caregiver perceptions of VC. There is also a need to consider formal integration of VC into ALS MDC pathways to enable accessible care to patients and families affected.