LIS patients' socio-demographic, disease characteristics, quality of life and end-of-life data in unhappy (ACSA ratings <0) versus happy (ACSA ≥0) respondents
| All patients (N=65) | Unhappy (ACSA <0) (N=18) | Happy (ACSA ≥0) (N=47) | p Value | |
| Mean age±SD (years) | 49±11 | 50±10 | 49±12 | 0.571 |
| Male gender | 43/63 (68%) | 12/18 (67%) | 31/45 (69%) | 0.864 |
| Mean duration in LIS* (years), median (IQR) | 8 (5–10) | 7 (3–8) | 9 (5–13) | 0.005 |
| Educational level: university or college (vs high school or lower) | 25/56 (45%) | 5/16 (31%) | 20/40 (50%) | 0.197 |
| Net monthly income ≥€2500 (vs <€2500) | 20/53 (38%) | 4/13 (30%) | 16/40 (40%) | 0.547 |
| Place of living: home (vs institution) | 38/59 (64%) | 9/17 (53%) | 29/42 (69%) | 0.247 |
| Living with spouse or partner (vs single) | 36/56 (64%) | 9/16 (56%) | 27/40 (67%) | 0.431 |
| Religious (vs non-religious) | 40/57 (70%) | 13/16 (81%) | 27/41 (66%) | 0.240 |
| Recovery of speech production* | ||||
| None | 26/58 (45%) | 10/16 (63%) | 16/42 (38%) | 0.049 |
| Words | 11/58 (19%) | 4/16 (25%) | 7/42 (17%) | |
| Sentences | 21/58 (36%) | 2/16 (12%) | 19/42 (45%) | |
| Recovery of some limb mobility | 39/56 (70%) | 10/17 (59%) | 29/39 (74%) | 0.252 |
| Reintegration to Normal Living Index items | ||||
| I move around my living quarters as I feel necessary | ||||
| Yes | 23/60 (38%) | 6/17 (35%) | 17/43 (40%) | 0.453 |
| Rather yes | 13/60 (22%) | 2/17 (12%) | 11/43 (26%) | |
| Rather no | 10/60 (17%) | 3/17 (18%) | 7/43 (16%) | |
| No | 14/60 (23%) | 6/17 (35%) | 8/43 (18%) | |
| I move around my community as I feel necessary* | ||||
| Yes | 6/59 (10%) | 0/18 (0%) | 6/41 (15%) | 0.042 |
| Rather yes | 16/59 (27%) | 4/18 (22%) | 12/41 (29%) | |
| Rather no | 14/59 (24%) | 3/18 (17%) | 11/41 (27%) | |
| No | 23/59 (39%) | 11/18 (61%) | 12/41 (29%) | |
| I am able to take trips out of town as I feel necessary | ||||
| Yes | 17/57 (30%) | 3/17 (18%) | 14/40 (35%) | 0.298 |
| Rather yes | 13/57 (23%) | 3/17 (18%) | 10/40 (25%) | |
| Rather no | 7/57 (12%) | 2/17 (11%) | 5/40 (13%) | |
| No | 20/57 (35%) | 9/17 (53%) | 11/40 (27%) | |
| I am comfortable with how my self-care needs (dressing, feeding, toileting, bathing) are met | ||||
| Yes | 36/59 (61%) | 10/18 (56%) | 26/41 (64%) | 0.292 |
| Rather yes | 16/59 (27%) | 4/18 (22%) | 12/41 (29%) | |
| Rather no | 3/59 (5%) | 1/18 (6%) | 2/41 (5%) | |
| No | 4/59 (7%) | 3/18 (16%) | 1/41 (2%) | |
| I spend most of my days occupied in work activity that is necessary or important to me | ||||
| Yes | 8/60 (13%) | 1/18 (5%) | 7/42 (17%) | 0.390 |
| Rather yes | 5/60 (8%) | 2/18 (12%) | 3/42 (7%) | |
| Rather no | 7/60 (12%) | 1/18 (5%) | 6/42 (14%) | |
| No | 40/60 (67%) | 14/18 (78%) | 26/42 (62%) | |
| I am able to participate in recreational activities (hobbies, crafts, sports, reading, television, games, computers, etc) as I want to* | ||||
| Yes | 35/61 (57%) | 8/18 (44%) | 27/43 (63%) | 0.028 |
| Rather yes | 18/61 (31%) | 4/18 (22%) | 14/43 (33%) | |
| Rather no | 2/61 (3%) | 1/18 (6%) | 1/43 (2%) | |
| No | 6/61 (9%) | 5/18 (28%) | 1/43 (2%) | |
| I participate in social activities with family, friends and/or business acquaintances as is necessary or desirable to me | ||||
| Yes | 22/60 (37%) | 5/18 (28%) | 17/42 (40%) | 0.113 |
| Rather yes | 14/60 (23%) | 4/18 (2%) | 10/42 (24%) | |
| Rather no | 9/60 (15%) | 1/18 (6%) | 8/42 (19%) | |
| No | 15/60 (25%) | 8/18 (44%) | 7/42 (17%) | |
| I assume a role in my family which meets my needs and those of my family members | ||||
| Yes | 25/59 (42%) | 8/18 (44%) | 17/41 (41%) | 0.396 |
| Rather yes | 21/59 (36%) | 4/18 (22%) | 17/41 (41%) | |
| Rather no | 5/59 (8%) | 2/18 (12%) | 3/41 (8%) | |
| No | 8/59 (14%) | 4/18 (22%) | 4/41 (10%) | |
| In general I am comfortable with my personal relationships | ||||
| Yes | 32/61(52%) | 9/18 (50%) | 23/43 (53%) | 0.884 |
| Rather yes | 18/61 (30%) | 5/18 (28%) | 13/43 (30%) | |
| Rather no | 4/61 (7%) | 1/18 (5%) | 3/43 (7%) | |
| No | 7/61 (11%) | 3/18 (17%) | 4/43 (10%) | |
| In general I am comfortable with myself when I am in the company of others | ||||
| Yes | 27/60 (45%) | 7/18 (39%) | 20/42 (48%) | 0.293 |
| Rather yes | 19/60 (31%) | 4/18 (22%) | 15/42 (36%) | |
| Rather no | 7/60 (12%) | 3/18 (17%) | 4/42 (9%) | |
| No | 7/60 (12%) | 4/18 (22%) | 3/42 (7%) | |
| I feel that I can deal with life events as they happen* | ||||
| Yes | 20/60 (33%) | 6/18 (33%) | 14/42 (33%) | 0.022 |
| Rather yes | 18/60 (30%) | 3/18 (17%) | 15/42 (36%) | |
| Rather no | 12/60 (20%) | 2/18 (11%) | 10/42 (24%) | |
| No | 10/60 (17%) | 7/18 (39%) | 3/42 (7%) | |
| Depression, anxiety and pain | ||||
| Depression* | ||||
| Yes | 8/60 (13%) | 5/18 (28%) | 3/42 (7%) | 0.040 |
| No | 52/60 (87%) | 13/18 (72%) | 39/42 (93%) | |
| Anxiety* | ||||
| No | 20/61 (33%) | 5/18 (28%) | 15/43 (35%) | 0.015 |
| Moderate | 33/61 (54%) | 7/18 (39%) | 26/43 (60%) | |
| Extreme | 8/61 (13%) | 6/18 (33%) | 2/43 (5%) | |
| Pain | ||||
| No | 32/59 (54%) | 10/18 (56%) | 22/41 (54%) | 0.071 |
| Moderate | 25/59 (43%) | 6/18 (33%) | 19/41 (46%) | |
| Extreme | 2/59 (3%) | 2/18 (11%) | 0/41 (0%) | |
| End-of-life issues | ||||
| Resuscitation in case of cardiac arrest* | ||||
| Yes | 23/55 (42%) | 2/14 (14%) | 21/41 (51%) | 0.011 |
| No | 32/55 (58%) | 12/14 (86%) | 20/41 (49%) | |
| Euthanasia* | ||||
| Envisaged | 31/59 (53%) | 12/16 (75%) | 19/43 (44%) | 0.032 |
| Never envisaged | 28/59 (47%) | 4/16 (25%) | 24/43 (56%) | |
| Suicidal thoughts* | ||||
| Never | 40/59 (68%) | 9/17 (54%) | 31/42 (74%) | 0.040 |
| Occasionally | 14/59 (24%) | 4/17 (23%) | 10/42 (24%) | |
| Often | 5/59 (8%) | 4/17 (23%) | 1/42 (2%) | |
* Significant variables identified by the univariate analyses comparing unhappy versus happy with related p values.
ACSA, Anamnestic Comparative Self-Assessment Scale; LIS, locked-in syndrome.