- Frequency distribution of MS long-term prognosis as reported by the subjects in the sample (N= 375).
| Variables | Number | Percent |
|---|---|---|
| “During your consultation with your Neurologist, has your long-term prognosis ever been addressed?” | ||
| No | 256 | (68.3) |
| Yes | 119 | (31.7) |
| “During your appointments, who introduced you the discussion of long-term prognosis?” | ||
| The patient | 43 | (11.5) |
| Neurologist | 86 | (22.9) |
| Multiple Sclerosis specialist nurse | 5 | (1.3 |
| GP | 5 | (1.3) |
| Other health care professional | 5 | (1.3 |
| Family member or friend | 7 | (1.9) |
| Don’t know / can’t remember | 11 | (2.9) |
| Nobody | 256 | (70.5) |
| “Which healthcare professionals gave you different messages when your long-term prognosis was addressed?” | ||
| Different neurologists gave different messages. | 88 | (23.5) |
| Different GPs gave different messages. | 31 | (8.3) |
| Nobody | 256 | (68.3) |
| “Do you well-understand your long-term prognosis?” | ||
| I have no idea at all | 248 | (66.1) |
| I have a very rough idea (give or take 20 years) | 48 | (12.8) |
| I have a rough idea (give or take 10 years) | 39 | (10.4) |
| I have an accurate idea (give or take 5 years) | 15 | (4.0) |
| I have a very accurate idea (give or take 2 years) | 25 | (6.7) |
| “At the moment, please rate how eager you are to identify your long-term prognosis.” | ||
| A lot | 231 | (61.6) |
| A little | 41 | (10.9) |
| I do not want to know | 70 | (18.7) |
| Not sure | 33 | (8.8) |
| “The moment your diagnosis was provided, please rate how eager you are to identify your long-term prognosis.” | ||
| A lot | 225 | (60.0) |
| A little | 59 | (15.7) |
| I would not have wanted to know | 58 | (15.5) |
| Not sure | 33 | (8.8) |
| “In the years to come, please rate how eager you are to identify your long-term prognosis.” | ||
| A lot | 224 | (59.7) |
| A little | 52 | (13.9) |
| I would not have wanted to know | 58 | (15.5) |
| Not sure | 41 | (10.9) |
| Approximately how often you contemplate about your long-term prognosis? | ||
| Daily | 108 | (28.8) |
| Weekly | 69 | (18.4) |
| Monthly | 54 | (14.4) |
| Once a year | 22 | (5.9) |
| Rarely | 89 | (23.7) |
| Never | 33 | (8.8) |
| “By the following people, have you ever addressed your long-term prognosis with them?” | ||
| Partner or spouse | 74 | (19.7) |
| Parents | 53 | (5.3) |
| Children | 16 | (4.3) |
| Other family members | 67 | (17.9) |
| Friends | 88 | (23.5) |
| Colleagues at work | 10 | (2.7) |
| Employer | 9 | (2.4) |
| No-one | 210 | (56.0) |
| “Does it will influence your current decision if you will learn an accurate long-term prognosis?” | ||
| Treatment | 249 | (66.4) |
| Relationships | 117 | (31.2) |
| Family planning (i.e. if and when to have children) | 86 | (22.9) |
| Job matters | 202 | (53.9) |
| Financial planning | 162 | (43.2) |
| Drawing up a will | 61 | (16.3) |
| End-of-life decisions (e.g. instructions about medical interventions if you became very ill or disabled) | 148 | (39.5) |