Table 2.
Proposed conditions for when to seek physical contact with the medical personnel at health facilities vs when to maintain remote contact.
| Contact with medical personal at health facilities | |
| Neurological status | First consult, diagnostic EMG, exclusion image exams |
| Rapid clinical deterioration | |
| Intractable spasticity associated with pain | |
| Advanced life directives discussion and end-of-life interventions | |
| Respiratory status | De novo respiratory symptoms |
| Adaptation to NIV | |
| Intolerance to NIV | |
| Tracheostomy intervention | |
| Respiratory decompensation (respiratory infections) | |
| Respiratory emergencies (aspiration, pulmonary embolism) | |
| Bulbar/ Nutritional status | Frequent swallowing problems with coughing/ choking |
| Rapid weight loss | |
| Dehydration | |
| Gastrostomy intervention | |
| Adaptation to AAC | |
| Limb status | Venous thrombosis |
| Falls and fractures | |
| Adhesive capsulitis of the shoulder with pain | |
| Intractable spasticity associated with pain | |
| Other medical conditions | Fecaloma |
| Other acute medical conditions requiring interventive measures (diagnostic and/or therapeutic) | |
| Optimal remote visit in ALS | |
| Neurological status | Regular follow-up consults |
| Functional scales including ALSFRS-R, and QoL scales | |
| Therapeutic prescriptions | |
| Patient/carer support | |
| Respiratory status | Regular evaluation of the presence of respiratory symptoms/signs of respiratory involvement |
| Respiratory tests if available (nocturnal pulse oxymetry, home spirometry, peak expiratory flow) | |
| Regular NIV follow-up | |
| Bulbar/ Nutritional status | Regular evaluation of bulbar symptoms with impact on the nutritional status |
| Nutritional tests (weight recordings, caloric and hydric intake recordings, energy expendure) | |
| Regular follow-up on gastrostomy care | |
| Speech recordings | |
| AAC training | |
| Cognitive status | Regular assessments, including emotional lability and cognitive-behavioural involvement |
| Regular cognitive training | |
| Limb status | Regular assessment (mobility and posture including with sensors if available, fasciculations, cramps, muscle atrophy, retractions, skin lesions, limb oedema) |
| Regular evalution of maximal articular amplitudes performed actively | |
| Muscle strenght evaluation (subjectively as for localized weakness of the neck, hands, etc., and objectively if a home dynamometer is available) | |
| Other medical conditions | Regular checking on the stability of other medical conditions |
For Abbreviations, please refer to “Abbreviations” section.