TABLE 5.
Reporting the instruments used to measure the outcomes reported in this scoping review
| Outcome domain | Outcome | Measurement instruments per outcome | n (%) |
|---|---|---|---|
| Mortality/survival | Survival | _ | |
| Physiological/clinical | Cough strength (e.g. peak cough flow) | Peak flow meter | 22 (46) |
| Pneumotachograph | 15 (31) | ||
| Spirometer | 14 (29) | ||
| Flow analyser | 2 (4) | ||
| Plethysmography | 1 (2) | ||
| Not reported | 1 (2) | ||
| Lung volume (e.g. vital capacity, forced vital capacity, forced expiratory volume, expiratory reserve volume) | Spirometer | 32 (67) | |
| Pneumotachograph | 10 (21) | ||
| Plethysmography | 3 (6) | ||
| Electrical impedance tomography | 3 (6) | ||
| Flow analyser | 1 (2) | ||
| Helium dilation | 1 (2) | ||
| Not reported | 3 (6) | ||
| Insufflation capacity (e.g. maximum insufflation capacity, lung insufflation capacity) | Spirometer | 14 (64) | |
| Pneumotachograph | 5 (23) | ||
| Plethysmography | 2 (9) | ||
| Flow analyser | 1 (5) | ||
| Helium dilation | 1 (5) | ||
| Calculation from ventilator | 1 (5) | ||
| Oxygen levels (e.g. saturation of peripheral oxygen) | Transcutaneous monitor | 13 (87) | |
| Plethysmography | 1 (7) | ||
| Polysomnography | 1 (7) | ||
| Air flow (e.g. peak expiratory flow, forced expiratory flow) | Spirometer | 8 (62) | |
| Pneumotachograph | 3 (23) | ||
| Peak flow meter | 2 (15) | ||
| Plethysmography | 1 (8) | ||
| Respiratory muscle strength (e.g. maximal inspiratory pressure, maximal expiratory pressure, sniff nasal inspiratory pressure) | Manometer | 10 (63) | |
| Electrometer | 2 (13) | ||
| Not described | 4 (25) | ||
| Respiratory rate | Pneumotachograph | 4 (50) | |
| Plethysmography | 2 (25) | ||
| Electrical impedance tomography | 1 (13) | ||
| Spirometer | 1 (13) | ||
| Transcutaneous monitor | 1 (13) | ||
| Airway pressure (e.g. peak inspiratory pressure, peak expiratory pressure, transpulmonary pressure) | Manometer | 3 (100) | |
| Carbon dioxide levels | Transcutaneous monitor | 3 (50) | |
| Capnography monitor | 3 (50) | ||
| Lung expansion/compliance | Pneumotachograph | 2 (40) | |
| Manometer | 2 (40) | ||
| Spirometer | 1 (20) | ||
| Pulse method | 1 (20) | ||
| From a previous study – unable to obtain details | 1 (20) | ||
| Heart rate | Transcutaneous monitor | 2 (40) | |
| Photoplethysmography | 1 (20) | ||
| Electrocardiogram | 1 (20) | ||
| Not reported | 1 (20) | ||
| Cough volume | Spirometer | 2 (100) | |
| Pneumotachograph | 1 (50) | ||
| Mean arterial pressure | Photoplethysmography | 2 (100) | |
| Airway resistance | Oscilloresistometry | 1 (50) | |
| Plethysmography | 1 (50) | ||
| Airway collapsibility | Spirometer | 1 (100) | |
| Sputum weight | Balance | 1 (100) | |
| Global quality of life | Quality of life | 36-Item Short Form Survey | 2 (67) |
| Sickness impact profile | 1 (33) | ||
| Assessment of quality of life 8-dimension | 1 (33) | ||
| Severe respiratory insufficiency questionnaire | 1 (33) | ||
| Sleep apnoea quality of life index | 1 (33) | ||
| Functioning | Breathlessness | Borg scale | 2 (67) |
| Baseline dyspnoea Index/transitional dyspnoea index | 1 (33) | ||
| Impact on functional ability | Amyotrophic lateral sclerosis functional rating scale - revised | 2 (67) | |
| Amyotrophic lateral sclerosis assessment questionnaire 5 | 1 (33) | ||
| Fatigue | Fatigue severity scale | 1 (100) | |
| Delivery of care | Comfort | Visual analogue scale | 5 (83) |
| Visual numeric scale | 1 (17) | ||
| Patient satisfaction | Questionnaire/survey | 3 (75) | |
| Visual analogue scale | 1 (25) | ||
| Patient-reported cough strength | Visual analogue scale | 2 (100) | |
| Patient-reported effectiveness of secretion clearance | Visual analogue scale | 1 (100) | |
| Impact of delivering secretion clearance technique on caregiver | Caregiver strain index | 1 (50) | |
| Purposely designed survey | 1 (50) | ||
| Adherence to secretion clearance techniques | Diary | 2 (67) | |
| Caregivers therapy adherence questionnaire | 1 (33) | ||
| Lung volume recruitment counter | 1 (33) |
Data are presented as n (%). Proportions do not always sum to 100% as multiple instruments were used in some studies to measure the same outcome and some studies do not report which measurement instruments were utilised. The denominators for the calculation are the number of studies who reported using the outcome.