Article Figures & Data
Tables
Variables Number Percent Age Mean 33.99 SD 8.87 20 or less 14 3.7 21– 30 128 34.1 31 – 40 162 43.2 41 – 50 52 13.9 51 and up 19 5.1 Gender Male 137 36.5 Female 238 63.5 Education Primary or Secondary 55 14.7 Occupational/diploma University 43 11.5 University or postgraduate 268 71.5 Other 9 2.4 Marital Status Married 214 57.1 Not married 161 42.9 Nationality Saudi 351 93.6 Non-Saudi 24 6.4 Region Central Region 166 44.3 Eastern Region 62 16.5 Western Region 88 23.5 Southern region 38 10.1 Northern region 21 5.6 Occupation Employed/self-employed (full or part-time) 178 47.5 Not working due to sickness or disability 69 18.4 Retired 24 6.4 Other 104 27.7 Variables Number Percent MS type RRMS 269 71.7 SPMS 49 13.1 PPMS 57 15.2 Duration since diagnosis (in years) Mean 8.59 SD 6.50 5 or less 147 39.2 6-10 105 28.0 11-20 107 28.5 21 and up 16 4.3 Duration since the onset of symptoms (in years) Mean 9.61 SD 6.62 5 or less 112 29.9 6-10 120 32.0 11-20 122 32.5 21 and up 21 5.6 MS - Multiple Sclerosis, RRMS - Relapsing Remitting MS, SPMS - Secondary Progressive MS, PPMS - Primary progressive MS
- Table 3
- 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) Variables Number Percent “Do you want to be notified about the availability of this tool during your medical appointment if this tool is successfully created?” Yes 321 85.6 No 54 14.4 “What is the timeline you prefer to avail the prognosis tool?” At diagnosis 306 81.60 A few weeks or months after diagnosis 52 13.87 When you need to make a treatment decision 115 30.67 When you need to make a life decision 103 27.47 At other times 9 2.40 Never 34 9.07 “Learning your long-term prognosis by using this tool, which of the following setup would you agree?” I use the software myself, on my own 131 34.9 Use the software myself, accompanied by a significant other) 98 26.1 With a neurologist, unaccompanied by a significant other 159 42.4 With a neurologist and accompanied by a significant other 116 30.9 With an MS specialist nurse, unaccompanied by a significant other 51 13.6 With an MS specialist nurse and accompanied by a significant other 44 11.3 Never 34 9.1 “The following long-term prognosis can be measured by the tool. At the moment, which of these you most want to know?” Whether / when you will need a stick 167 44.5 Whether / when you will need a wheelchair 187 49.9 Whether / when your MS will convert to the secondary progressive 259 69.1 Life expectancy 181 48.3 “Should we announce publicly the availability of the tool, such as on the web?” 1=Yes 156 41.6 0=No 85 22.7 2=Not sure 134 35.7 - Table 5
- Relationship between the MS patient’s desire to be informed about tools for estimating long term prognosis and selected demographic variables.
Variables If the development of this tool were to succeed, would you like to be informed of this tool’s availability during a clinic appointment? Chi Square P-value No (n=54) Yes (n=321) Number (%) Number (%) Age 20 or less 0 (0.0) 14 (4.4) 20–30 13 (24.1) 115 (35.8) 22.05 <0.001 31–40 20 (37.0) 142 (44.2) 41–50 18 (33.3) 34 (10.6) 51 and up 3 (5.6) 16 (5.0) Gender 4.934 0.020 Male 27 (50.0%) 110 (34.3) Female 27 (50.0%) 211 (65.7) Education 2.843 0.416 Primary or Secondary 10 (18.5) 45 (14.0) Occupational/diploma 9(16.7) 34 (10.6) University or postgraduate 34 (63.0) 234 (72.9) Other 1 (1.9) 8 (2.5) - Table 6
- Comparison of the mean duration of diagnosis and duration of symptoms onset and the patient’s desire to be informed about tools for estimating long term prognosis.
Variables If the development of this tool were to succeed, would you like to be informed of this tool’s availability during a clinic appointment? F P No Yes Mean SD Mean SD Duration since diagnosis (in years) 11.31 6.86 8.13 6.33 0.839 0.360 Duration since the onset of symptoms 12.11 7.12 9.19 6.45 1.389 0.239
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