Background
Methods
Participants and data collection
Questionnaire survey
Results
Case 1 | Case 2 | Case 3 | Case 4 | Case 5 | Case 6 | Average | |
---|---|---|---|---|---|---|---|
Age at last admission/sex | 56/M | 48/F | 46/F | 49/M | 63/M | 68/M | 57.7 |
First ALS symptom | Lower limb | Upper limb | Upper limb | Bulbar | Lower limb | Bulbar | |
Duration from symptom onset to CPL (months) | 22 | 42 | 48 | 25 | 34 | 17 | 42.7 |
Duration after CPL (months) | 55 | 37 | 24 | 39 | 22 | 60 | 33.5 |
VC % at CPL | 45.7 | NA | 47.5 | 67.3 | 64.4 | NA | |
FVC % at CPL | 50.9 | NA | 61.9 | 58.6 | 58.3 | NA | |
Aspiration with water | – | – | + | – | – | + | |
Status of oral intake at the examination | 1 meal oral intake | 2 meals oral intake | 2 meals oral intake | Limited smallest oral intake | 1 meal oral intake | No oral intake | |
Aspiration pneumonia after CPL | None | None | None | None | None | None | |
Number of sputum suctions after CPL | 12–20 | 12–20 | 12–15 | 12–20 | 20 | NA | |
Timing of introduction of continuous low-pressure aspiration after CPL (months) | 3 | 1 | 2 | 2 | 0.5 | No use | 1.7 |
Number of sputum suction after the introduction of continuous low-pressure aspiration | 0–1 | 0–1 | 0–1 | 3–4 | 10–12 | No use | |
Outcome of the use of continuous low-pressure aspiration | Good | Good | Good | Good | Good | NA | |
Aerophagia after CPL | + | + | + | – | + | + | |
Communication status | I | I | IV | I | I | V | |
ALSFRS-R score at the last admission | 1 | 2 | 2 | 1 | 4 | 0 |
No. | Questions | Patient/mean score | Caregiver/mean score |
---|---|---|---|
1 | Were you proactive to surgery to prevent aspiration? | 4.5 | 3.2 |
2 | Are you glad you or your primary caregivers did surgery to prevent aspiration? | 4 | 4.4 |
3 | Have you been able to adequately talk to others about surgery to prevent aspiration? | 4 | 3.7 |
4 | Do you feel that you have been provided with enough information about surgery to prevent aspiration? | 4.5 | 3.8 |
5 | Have there been any unanticipated serious adverse events following surgery to prevent aspiration? | 1.5 | 1.8 |
6 | Have there been any unanticipated small adverse events after surgery to prevent aspiration? | 3.25 | 3 |
7 | Have there been any unanticipated significant good things about surgery to prevent aspiration? | 3.75 | 3.5 |
8 | Have there been any unanticipated small good things about surgery to prevent aspiration? | 3 | 3 |
9 | Do you think there has been any long-term change after surgery to prevent aspiration? | 4.25 | 2.8 |