Table 3.
Demographics, clinical features and assessment scores per trial group
| Interest in participation shown | Remaining in MND–SMART participants | MND–SMART participants | No engagement | |
|---|---|---|---|---|
| Registered interest with the trial team, were screened for participation or joined MND–SMART | Participated in MND–SMART and remain participants at 1-year timepoint | Participated in MND–SMART at some stage in the 1-year time frame | Did not become MND–SMART participants and did not register interest | |
| n = 93 | n = 38 | n = 59 | n = 48 | |
| Gender | ||||
| Male | 63 | 25 | 41 | 31 |
| Female | 30 | 13 | 18 | 17 |
| Long survivor | ||||
| Yes | 19 | 10 | 11 | 15 |
| No | 74 | 28 | 48 | 33 |
| Region of onset | ||||
| Lower limb | 37 | 20 | 25 | 16 |
| Upper limb | 21 | 10 | 14 | 9 |
| Bulbar | 18 | 5 | 13 | 16 |
| Respiratory | 2 | 2 | 2 | - |
| Mixed | 9 | 1 | 3 | 5 |
| No data | 6 | – | 2 | 2 |
| Sub-type | ||||
| ALS | 59 | 24 | 36 | 33 |
| PLS | 14 | 8 | 9 | 5 |
| PMA | 3 | 2 | 2 | 2 |
| PBP | 9 | 2 | 8 | 6 |
| MND–FTD | 1 | – | – | 1 |
| Other | 2 | 1 | 2 | – |
| Mean (SD) | ||||
|---|---|---|---|---|
| Age | 64.91 (9.01) | 62.66 (10.29) | 63.53 (9.35) | 70 (7.98) |
| Number of interventions used | 0.56 (0.63) | 0.53 (0.60) | 0.63 (0.64) | 0.65 (0.73) |
| Number of studies previously participated in | 0.91 (1.39) | 1.13 (1.38) | 1.02 (1.47) | 1.02 (1.45) |
| ECAS total score | 109.73 (13.32) | 108.97 (12.85) | 109.48 (13.23) | 116.17 (10.74) |
| ALSFRS (R) | 32.99 (8.87) | 34.58 (7.63) | 32.72 (9.02) | 30.53 (9.59) |
| HADS | ||||
| Anxiety | 5.99 (3.91) | 5.79 (4.13) | 6.31 (4.20) | 5.58 (4.01) |
| Depression | 6.16 (3.56) | 5.32 (3.29) | 6.00 (3.62) | 6.92 (3.04) |
| Total | 12.44 (6.85) | 11.34 (7.14) | 12.56 (7.31) | 12.71 (6.53) |
| STAI | ||||
| State | 45.84 (5.54) | 46.50 (5.34) | 45.92 (5.73) | 45.44 (6.25) |
| Trait | 45.24 (5.22) | 45.76 (5.13) | 45.25 (5.30) | 43.65 (6.68) |
| Total | 90.87 (9.44) | 92.05 (8.92) | 91.03 (9.62) | 88.65 (11.05) |
| PHQ | ||||
| Total | 6.86 (5.29) | 6.89 (4.14) | 7.02 (4.55) | 7.17 (6.03) |
| Presence of suicidality n (%) | 18 (19) | 4 (11) | 11 (19) | 11 (23) |
| ALSQOL | 4.80 (1.39) | 4.74 (1.46) | 4.98 (1.39) | 4.96 (1.41) |
| HRQOL | ||||
| Overall health | 2.86 (1.12) | 2.95 (1.06) | 2.93 (1.08) | 2.46 (1.07) |
| Physical health symptoms | 13.87 (12.86) | 14.76 (12.79) | 13.14 (12.70) | 18.62 (13.15) |
| Mental health symptoms | 7.17 (9.49) | 9.38 (11.16) | 8.60 (10.42) | 5.48 (7.82) |
| Days impacting usual activities | 9.24 (12.25) | 10.03 (12.57) | 10.28 (12.89) | 10.75 (12.71) |
| bDAS | 7.82 (5.27) | 6.26 (4.70) | 6.77 (4.89) | 8.45 (5.21) |
HRQOL ratings of overall health options are; 5 = Excellent, 4 = Very Good, 3 = Good, 2 = Fair, or 1 = Poor
SD standard deviation, MND–SMART motor neuron disease–systematic multi-arm randomised adaptive trial, MND motor neurone disease, ALS amyotrophic lateral sclerosis, PLS primary lateral sclerosis, PBP progressive bulbar palsy, PMA progressive muscular atrophy, MND–FTD motor neurone disease–frontotemporal dementia, ECAS Edinburgh Cognitive and Behavioural Amyotrophic Lateral Sclerosis Screen, ALSFRS-R amyotrophic lateral sclerosis functional rating scale revised, HADS hospital anxiety and depression scale, STAI state–trait anxiety inventory, PHQ patient health questionnaire, ALSQOL amyotrophic lateral sclerosis quality of life, HRQOL health related quality of life, bDAS brief dimensional apathy scale