BACKGROUND
The COVID-19 pandemic brought significant challenges to ALS care, which is recommended to include provision within specialized multidisciplinary clinics, and further highlighted the potential for virtual care (VC) strategies. There is very limited data pertaining to clinical outcomes associated with VC in ALS.
OBJECTIVE
In the ALS Clinic context, we aimed to assess the impact of VC on patient-reported quality of life (QOL), clinical progression, caregiver burden, and travel distance/time savings.
METHODS
Eleven participants with ALS, receiving synchronous virtual multidisciplinary ALS Clinic care, had baseline and 6-month follow-up outcome data compared across the EQ-5D-5L, ALS Functional Rating Scale-Revised (ALSFRS-R), Clinical Frailty Scale (CFS), and Zarit Burden Interview (ZBI). VC was provided by video or audio-based platforms.
RESULTS
For QOL via EQ-5D-5L, improvement was noted on several dimensions, including Anxiety/Depression, while the Paretian Classification of Health Change identified general stability. Mean (SD) EQ-VAS patient percieved health scores trended towards improvement [51.3 (22.3) to 57.4 (21.6) (P=.591)]. Mean ALSFRS-R scores declined 0.62 points per month, while mean (SD) CFS scores increased [5 (1.48) to 5.8 (1.14)]. Mean (SD) ZBI caregiver burden scores trended down [24.67 (17.61) to 20.83 (16.68) (P=.334)], as did the proportion with high burden [55.5% to 33.3% (P=.400)]. Mean travel distance/time saved per patient per visit was 167.8 km/1 hour 54 minutes.
CONCLUSIONS
We demonstrate successful application of synchronous virtual multidisciplinary ALS Clinic care, noting improvement in several patient-reported QOL domains, trends towards reduced caregiver burden, and considerable reduction in travel time over an interval with expected clinical progression.