Table 1. Characteristics of the 22 people with severe multiple sclerosis who participated in the personal semi-structured interviews.
| Characteristic | Sub-characteristic | N (%) |
| Women | 14 (64%) | |
| Age (years)1 | 58.7, 9.3 (41–77) | |
| Disease course | Primary progressive | 6 (27%) |
| Secondary progressive | 16 (73%) | |
| Time since MS diagnosis (years)1 | 22, 7.2 (14–39) | |
| EDSS score2 | 9.0 (8.0–9.5) | |
| PEG | 2 (9%) | |
| Barthel Index2 | 5 (0–55) | |
| Marital status | Single | 6 (27%) |
| Married | 13 (59%) | |
| Divorced | 2 (9%) | |
| Widow | 1 (5%) | |
| Occupation | Employed | 2 (9%) |
| Home employment | 1 (5%) | |
| Not working | 19 (86%) | |
| Living with | Family | 9 (41%) |
| Spouse | 6 (27%) | |
| Mother (81, 85, 87 years) | 3 (14%) | |
| Alone | 2 (9%) | |
| Paid caregiver | 2 (9%) | |
| Followed by | MS center | 11 (50%) |
| Rehabilitation hospital | 5 (23%) | |
| Rehabilitation service, community based | 4 (18%) | |
| Neurologist | 1 (5%) | |
| Family doctor | 1 (5%) |
MS is multiple sclerosis. EDSS is Expanded Disability Status Scale. PEG is percutaneous endoscopic gastrostomy.
1
Mean, SD (range).
2
Median (range).