Background: Telemedicine may increase access to clinical care and research, particularly for mobility-limited communities. Enhanced insight on community exposure and attitudes towards telemedicine may help optimize future use.
Objectives and Methods: Cure SMA sought information on the spinal muscular atrophy (SMA) community’s exposure to, comfort with, and perceived effectiveness of telemedicine via its 2021 Community Update Survey. The data was weighted to address differences between the survey sample and the SMA community. Descriptive analyses characterized the sample and ordered logit regression models identified predictors of exposure, comfort, and perceived effectiveness.
Results: The final sample included 463 caregivers and affected adults. 79.7% (369) had used telemedicine, 57.2% (265) reported comfort, and 37% (171) perceived it as effective for SMA. After weighting, significant predictors (p<0.05) of prior use included: gender (OR=1.76: males vs females), increasing income (OR=1.11), SMA Type (ORs: 0.58 and 0.38 for Type II and III vs I)), SMA treatment (OR=1.93: treated vs untreated), history of mental illness (OR=2.06: with vs none), comfort (ORs= 2.31 and 4.2: comfortable and very comfortable vs neutral) and perceived effectiveness (ORs= 2.66. 3.02, and 6.54: moderately to very effective vs neutral). Increased comfort was predicted by in-person doctor visit last year (OR=0.001: unknown vs no), exposure (ORs= 1.71 and 2.99: minimal and frequent use vs none), and perceived effectiveness (ORs= 3.39 to 106.33: for minimally to highly effective vs neutral). Increased perceived effectiveness was predicted by SMA Type (OR=1.68: Type II vs I), current motor function (ORs=0.40 stand and walk, vs non-sitter), SMA treatment (OR=2.13: treated vs untreated), in-person doctor visit last year (OR=32.9: unknown vs none), and comfort (ORs= 15.85, 0.20, 5.41, and 32.40, for very uncomfortable, uncomfortable, comfortable and very comfortable vs neutral).
Conclusions: These results can inform future telemedicine use in clinical care and research. They are particularly relevant in light of the expansion of telemedicine that has occurred during the COVID-19 pandemic.