Table 1.
Characteristics of RDs who provide nutritional management for patients with IMDs (N = 117).
| Question | Responses | Frequency (%) |
|---|---|---|
| Are you a member of GMDI? | Yes | 97 (82.9%) |
| No | 20 (17.1%) | |
| In which country are you located? | US | 98 (83.8%) |
| Other | 19 (16.2%) | |
| What telemedicine services, if any, does your institution provide for the care of patients with inherited metabolic disorders? (check all that apply) (10 missing responses) | None | 2 (1.9%) |
| I don't know | 0 (0%) | |
| Direct Outpatient care via videoconference | 99 (92.5%) | |
| Direct inpatient care via videoconference | 24 (22.4%) | |
| Consultation with other providers | 30 (28.0%) | |
| Store-and-forward | 0 (0%) | |
| Other | 18 (16.8%) | |
| Approximately how many patients with IMDs do you treat? (11 missing responses) | Mean | 215 |
| Standard deviation | 191 | |
| Range | 7–1,000 | |
| Have you received training on telemedicine for direct patient care? (10 missing responses) | Yes, prior to the COVID-19 outbreak | 33 (30.8%) |
| Yes, since the COVID-19 outbreak | 49 (45.8%) | |
| No, but I have plans to receive training | 10 (9.3%) | |
| No, and I have no plans to receive training | 14 (13.1%) | |
| Does your institution provide telemedicine services? (10 missing responses) | Yes | 100 (93.4%) |
| No | 7 (6.5%) | |
| I don't know | 0 (0%) | |
| Are there barriers to full implementation of telemedicine for patients with IMDs in your clinic? (10 missing responses) | Yes | 76 (71.0%) |
| No | 31 (29.0%) | |
| How would you describe your telemedicine activities for providing nutrition management to patients with IMDs? (12 missing responses) | No plan for development of telemedicine | 4 (3.8%) |
| Actively planning to implement telemedicine | 5 (4.8%) | |
| Started using telemedicine prior to the COVID-19 pandemic | 28 (26.7%) | |
| Started using telemedicine since the onset of the COVID-19 pandemic | 68 (64.8%) | |
| Do you have any of the following needs for telemedicine implementation? (Check all that apply) (39 did not select a need) | Training | 34 (43.6%) |
| Patient education materials | 62 (79.5%) | |
| Provider education materials | 31 (39.7%) | |
| Other | 6 (7.7%) | |
| Prior to the COVID-19 outbreak, did your institution have a plan in place for the use of telemedicine during a natural disaster or other public health emergency? (14 missing responses) | Yes | 13 (12.6%) |
| No | 58 (56.3%) | |
| I don't know | 32 (31.1%) | |
| Prior to the COVID-19 outbreak, did your institution have plans in place for blood draws during a natural disaster or other public health emergency? (14 missing responses) | Yes | 6 (5.8%) |
| No | 55 (53.4%) | |
| I don't know | 42 (40.8%) | |
| Prior to the COVID-19 outbreak, did your institution have plans in place for the provision of medical foods during a natural disaster or other public health emergency? (14 missing responses) | Yes | 17 (16.5%) |
| No | 68 (66.0%) | |
| I don't know | 18 (17.5%) |