Managing MS, Managing spasticity: People with MS experiences of Sativex

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1 Managing MS, Managing spasticity: People with MS experiences of Sativex Diane Redfern-Tofts Multiple Sclerosis Society October

2 Contents Introduction... 3 Method... 3 Questionnaire design... 3 Respondents... 4 Demographics... 5 Managing symptoms... 7 Awareness of Sativex... 9 Accesing Sativex Experience of Sativex Never taken Sativex Considering Sativex Reasons never taken Sativex Accessing Sativex Previously taken Sativex Paying for Sativex Reasons for stopping Sativex Accessing Sativex Currently taking Sativex Paying for Sativex Accessing Sativex Potential limitations References

3 Introduction MS is an unpredictable fluctuating condition. People with MS experience a wide variety of symptoms that can be influenced by many different factors such as stress, fatigue and heat. This report presents the initial results of a research project to explore experiences of Sativex (nabiximols), which is a cannabis-based oral spray licensed for treating spasticity in people with MS. For more information on the range of symptom management treatments available for MS please see the MS Society website ( or call A lottery of treatment and care: MS services across the UK 1 revealed that just one in 50 people with MS are accessing Fampyra or Sativex across the UK, two treatments that are proven to significantly improve the quality of life for people with MS. They can help people walk more easily and manage painful muscle spasms but there is growing concern that access to these treatments is only going to become more difficult. In June 2014 the National Institute for Health and Care Excellence (NICE) published draft clinical guidelines for the treatment of MS. They published a preliminary recommendation within this to block access to both Fampyra and Sativex. They were deemed not to be cost effective treatments. In reaction to this recommendation, the MS Society called for people with MS to send in their experiences of trying to access Sativex. These responses indicated that our information on the use of Sativex was sparse and demonstrated a need for us to find out more about the views and experiences of people with MS. The research presented here is part of our ongoing work to understand these issues more clearly. Method Questionnaire design An online questionnaire was designed to explore the use of Sativex and cannabis as a way people with MS may try to manage their symptoms. The questionnaire was designed by the MS Society s Policy and Research teams. The nature of the questionnaire meant that the number of items varied depending on how people answered specific questions. All respondents answered the initial nine items; focusing on demographics, year of diagnosis, symptoms experienced and awareness of Sativex (nabiximols). The main part of the questionnaire was then divided into two sections; one on Sativex and one on cannabis. This report focuses on the responses received to the first part of the questionnaire on Sativex. The results from the questions about cannabis will be explored in a subsequent report. 3

4 The respondents fit in one of four categories, meaning the section about Sativex was thus split into four branches: Branch 1 For those currently taking Sativex Branch 2 For those who had previously taken Sativex, but were not at the time of completing the questionnaire Branch 3 For those who had never taken Sativex, but had considered taking it Branch 4 For those who had never considered taking Sativex All respondents from these four branches were asked about the extent to which accessing Sativex was currently a priority for them. Branches 1 and 2 included items about paying privately for Sativex. All branches, other than those who had never considered Sativex, also included items about the reasons behind their decision. The questionnaire was piloted with MS Society Research Network members (people affected by MS), who assessed any necessary design and content changes (question wording, topic and structure). See appendix 1 for a full list of questionnaire items. Respondents The questionnaire was promoted in three different ways between 8 and 22 September 2014: 1. MS Society social media channels 2. MS Society Campaigns Community 3. UK MS Register A total of 5199 people responded to the questionnaire. The data from 1205 people was not included in the analysis for a variety of reasons: Partial responses (n=958) Disqualification due to not having a diagnosis of MS, not living in the UK, or being under the age of 18 (n=247) Data from the remaining 3994 people who completed the questionnaire was used for analysis. 4

5 Demographics 3994 people completed the questionnaire 71% (n=2852) females and 29% (n=1142) males. Most of the respondents (51%) were aged between 35 and 54 years. 71% (n=2852) )) 29% (n=1142) 1% (n=39) 9% (n=354) 39% (n=1549) % (n=2052) Figure 1: Breakdown of the age of respondents 5

6 Year diagnosed with MS 15% (n=606) 8% (n=342) 49% (n=1940) Relapsing remitting MS Secondary progressive MS Figure 3 below shows that 26% (n=1035) of people were diagnosed with MS between 2005 and Primary progressive MS % (n=966) 28% (n=1106) I m not sure % (n=747) 25.9% (n=1035) % (n=514) % (n=337) Figure 2: Breakdown of the type of MS respondents has currently % (n=198) The figure above shows that the majority of people (49%) had relapsing remitting MS or secondary progressive MS (28%) % (n=101) 1.5%(n=60) 0.7% (n=27) % (n=5) % (n=4) Number of respondents Figure 3: Breakdown of when respondents were diagnosed with MS 6

7 Symptoms Managing symptoms Respondents were asked about the symptoms they had experienced during the course of their MS. Figure 4 shows that 90% (n=3597) of the respondents had experienced fatigue, 87% (n=3460) difficulties with walking, and 86% (n=3423) had experienced problems with balance and coordination. 78% (n=3119) of people had experienced muscle stiffness, spasticity and spasms during the course of their MS. Tremor Swallowing problems Speech problems Sexual problems Problems with memory, attention and problem solving (cognition) Problems with balance and co-ordination Pain Muscle stiffness, spasticity and spasms Fatigue Eye and sight problems Difficulties with walking Depression and anxiety Bowel problems Bladder problems 30% (n=1194) 25% (n=992) 27% (n=1070) 39% (n=1570) 59% (2342) 86% (n=3423) 62% (n=2490) 78% (n=3119) 90% (n=3597) 59% (n=2344) 87% (n=3460) 54% (n=2164) 50% (n=1986) 74% (n=2941) Number of people Figure 4: Symptoms experienced by people during the course of their MS 7

8 Symptoms Respondents were also asked to indicate the symptoms they were experiencing at the time of filling out the questionnaire. Figure 5 shows a breakdown of this. 78% (n=3095) of the respondents were currently experiencing fatigue, 70% (n=2794) had difficulties with walking and 66% (n=2654) were experiencing problems with balance and co-ordination. 61% (n=2430) of people were currently experiencing muscle stiffness, spasticity and spasms. Tremor Swallowing problems Speech problems Sexual problems Problems with memory, attention and problem solving (cognition) Problems with balance and co-ordination Pain Muscle stiffness, spasticity and spasms Fatigue Eye and sight problems Difficulties with walking Depression and anxiety Bowel problems Bladder problems 17% (n=681) 12% (n=473) 11% (n=442) 29% (n=1139) 42%(n=1674) 66% (n=2654) 47% (n=1867) 61% (n=2430) 78% (n=3095) 24% (n=956) 70% (n=2794) 31% (n=1228) 31% (n=1250) 53% (n=2101) Number of people Figure 5: Symptoms currently experienced by respondents Both of the above figures demonstrate that large numbers of people with MS experience muscle stiffness, spasticity and spasms. 8

9 Sativex a summary of findings Sativex (nabiximols) is a cannabis-based oral spray licensed for treating spasticity in people with MS. Awareness of Sativex With such a low number of people with MS taking Sativex in the UK and such a high number experiencing spasticity, it was important to find out if and how many people have heard of it. Respondents were presented with both the brand and scientific name. Figure 6 shows that 55% (n=2195) of people had heard of Sativex. 7% (n=290) 38% (n=1509) 55% (n=2195) Yes No Not sure Figure 6: A breakdown of awareness of Sativex 9

10 Frequency % (n=1833) 41% (n=362) 35% (n=1077) 7% 49% (n=432) (n=209) 9% (n=81) Heard of Sativex Not heard of Sativex Not sure if heard of Sativex Awareness of Sativex Figure 7 demonstrates that people who had experienced spasticity during the course of their MS were more likely to have heard of Sativex. 59% (n=1833) of people who had experienced muscle stiffness, spasticity and spasms had heard of Sativex. 71% (n=1077) of people who had not heard of Sativex had experienced muscle stiffness, spasticity and spasms. Experienced spasticity Not experienced spasticity Figure 7: Awarness of Sativex by experience of spasticity 10

11 Frequency Accesing Sativex All respondents who had heard of Sativex were asked the extent to which access to Sativex was currently a priority for them. Figure 8 shows that access to Sativex was a high priority or essential for 22% (n=492) of people who had heard of it % (n=735) 22% (n=489) 22% (n=479) 15% (n=321) 8% (n=171) Not a priority Low priority Medium priority High priority Essential Extent access to Sativex is currently a priority Figure 8: Extent access to Sativex is currently a priority for respondents 11

12 Experience of Sativex There were four different experiences of Sativex captured in the questionnaire: 1. Those currently taking Sativex 2. Those who had previously taken Sativex, but were not at the time of completing the questionnaire 3. Those who had never taken Sativex, but had considered taking it 4. Those who had never considered taking Sativex 2% (n=95) 3% (n=106) Figure 9 shows that 38% (n=1509) of respondents had never heard of Sativex and a further 7% (n=290) were not sure whether they had. 50% (n=1994) 7% (n=290) 38% (n=1509) 50% (n=1994) had heard of Sativex but never taken it, 2% (n=95) were currently taking it and 3% (n=106) had taken it previously. Those who had not heard of Sativex or were unsure whether they had heard of Sativex were not asked any further questions about Sativex. The remainder of this report presents the data gathered in relation to the four experience groups listed above, and includes data regarding: Figure 9: Experience of Sativex Never heard of Sativex Not sure if heard of Sativex Heard of Sativex but never taken it Currently taking Sativex Previously taken Sativex Reasons Paying privately for Sativex Extent access to Sativex is currently a priority for them 12

13 Never taken Sativex This section of the report focuses on the 50% (n=1994) of respondents who had heard of Sativex but never taken it. Considering Sativex Figure 10 below shows a breakdown of whether those who had never taken Sativex to manage the symptoms of their MS had ever considered taking it. 51% (n=1013) of people who had never taken Sativex had considered taking it. 49% (n=976) of those who had not taken Sativex had either been told by a healthcare professional that it was not available to them, or reported that to the best of their knowledge it was not available to them. 42% (n=834) 7% (n=147) 2% (n=37) 30% (n=595) Yes, I have considered it and it has been made available to me Yes, but to the best of my knowledge it is not available to me Yes, but I have been told by a healthcare professional that it is not available to me No 38% (n=617) 7% (n=113) 2% (n=30) 32% (n=529) 19% (n=381) I m not sure 21% (n=350) Figure 10: Breakdown of whether people who had never taken Sativex had considered it to manage symptoms Figure 11 : Breakdown of whether people who had experienced spasticity and never taken Sativex had considered taking it Figure 11 indicates that 55% (n=909) of people who had experienced spasticity and had never taken Sativex had considered taking it. However 54% (n=879) of people who had experienced spasticity and had never taken Sativex had either been told by a healthcare professional that it was not available to them, or it was not available to them to the best of their knowledge. 13

14 Frequency Reasons never taken Sativex Many people felt that Sativex was not available to them in the area where they live and that this was the main reason that they had never taken it. 50% (n=313) of people reported that this completely or to a large extent contributed to them never having taken it. In addition many respondents stated that they were not taking Sativex because they would have to pay privately for it. 35% (n=220) said that this either completely or largely resulted in them not taking Sativex. Table 1: Reasons never taken Sativex Reasons never taken Sativex Not at all To a small To a large Total Somewhat Completely extent extent answered Believe it would not help symptoms 350 (55.4%) 72 (11.4%) 125 (19.8%) 65 (10.3%) 20 (3.2%) 632 (100%) Concern about potential side effects 374 (59.2%) 144 (22.8%) 73 (11.6%) 31 (4.9%) 10 (1.6%) 632 (100%) Breastfeeding, pregnant or trying to conceive 436 (69.0%) 1 (0.2%) 2 (0.3%) 3 (0.5%) 5 (0.8%) 447 (70.7%) A specific medical issue meant it was not suitable 583 (92.2%) 22 (3.5%) 15 (2.4%) 4 (0.6%) 8 (1.3%) 632 (100%) Taking a treatment that thought more effective 499 (79.0%) 48 (7.6%) 53 (8.4%) 20 (3.2%) 12 (1.9%) 632 (100%) Want to manage MS without drugs 467 (73.9%) 82 (13.0%) 54 (8.5%) 23 (3.6%) 6 (0.9%) 632 (100%) Would have to pay privately for it 244 (38.6%) 61 (9.7%) 107 (16.9%) 65 (10.3%) 155 (24.5%) 632 (100%) Not available in the area where live 174 (27.6%) 37 (5.9%) 108 (17.1%) 91 (14.4%) 222 (35.1%) 632 (100%) Accessing Sativex The figure to the right shows the extent to which having access to Sativex is a priority for those who had never taken it Access to Sativex was a high priority or essential for 20% (n=393) of people who had never taken it % (n=680) 24% (n=472) 23% (n=449) 14% (n=287) 5% (n=106) Not a priority Low priority Medium priority High priority Essential Extent access to Sativex is currently a priority Figure 12: Extent access to Sativex is currently a priority for respondents who had never taken Sativex 14

15 Previously taken Sativex The following section of the report will examine more closely the 3% (n=106) of respondents who had previously taken Sativex but were no longer taking it at the time of filling out the questionnaire. Paying for Sativex The figure below shows that 23% (n=24) of people who had previously taken Sativex had paid privately for it at some point. 16% (n=17) 2% (n=2) 5% (n=5) Yes, I have paid privately for Sativex Yes, my family have paid privately for Sativex 77% (n=82) Yes, I have paid privately for Sativex with help from my family No Figure 13: Breakdown of the number of respondents took Sativex previously and how they paid for it 15

16 13% (n=3) Figure 14 indicates that of those who had paid privately at some point for their Sativex, 88% (n=21) always paid privately for it. Yes No 88% (n=21) Figure 14: Breakdown of whether those who took Sativex previously always paid privately Reasons for stopping Sativex The main reason people stopped taking Sativex was the belief that it was not helping their symptoms. 32% (n=34) of respondents said that this either largely contributed to or was the complete reason they stopped taking Sativex. 26% (n=28) reported that it was because Sativex was no longer available in the area in which they live and 25% (n=27) of people reported that the side effects that they were experiencing resulted in them stopping Sativex. Table 1: Reasons for stopping Sativex Reasons for stopping Sativex Not at all To a small To a large Total Somewhat Completely extent extent answered Believe it was not helping symptoms 40 (37.7%) 11 (10.4%) 21 (19.8%) 12 (11.3%) 22 (20.8%) 106 (100%) Side effects being experienced 60 (56.6%) 11 (10.4%) 8 (7.5%) 7 (6.6%) 20 (18.9%) 106 (100%) Concern about potential side effects 81 (76.4%) 12 (11.3%) 5 (4.7%) 6 (5.7%) 2 (1.9%) 106 (100%) Breastfeeding, pregnant or trying to conceive 54 (50.9%) 0 (-) 1 (0.9%) 0 (-) 1 (0.9%) 56 (53%) A specific medical issue meant it was no longer suitable 99 (93.4%) 1 (0.9%) 3 (2.8%) 2 (1.9%) 1 (0.9%) 106 (100%) Switched to a treatment that thought more effective 78 (73.6%) 5 (4.7%) 10 (9.4%) 2 (1.9%) 11 (10.4%) 106 (100%) Want to manage MS without drugs 80 (75.5%) 3 (2.8%) 15 (14.2%) 7 (6.6%) 1 (0.9%) 106 (100%) No longer received it for free and had to start paying privately 16 (15.1%) 1 (0.9%) 2 (1.9%) 2 (1.9%) 3 (2.8%) 24 (22.6%) Could no longer continue paying privately for it 11 (10.4%) 1 (0.9%) 2 (1.9%) 4 (3.8%) 6 (5.7%) 24 (22.6%) No longer available in the area where live 71 (67%) 1 (0.9%) 6 (5.7%) 8 (7.5%) 20 (18.9%) 106 (100%) No longer experiencing symptoms originally taking it for 96 (90.6%) 1 (0.9%) 5 (4.7%) 2 (1.9%) 2 (1.9%) 106 (100%) 16

17 Frequency Accessing Sativex The figure below shows the extent to which having access to Sativex is a priority for those who had previously taken it. Access to Sativex was high priority or essential for 20% (n=21) of people who had previously taken it % (n=53) % (n=16) 15% (n=16) 11% (n=12) 9% (n=9) Not a priority Low priority Medium priority High priority Essential Extent access to Sativex is currently a priority Figure 15: Extent access to Sativex is currently a priority for respondents who have previously taken Sativex 17

18 Currently taking Sativex This part of the report presents the findings from the 2% (n=95) of respondents who were taking Sativex at the time of completing the questionnaire. Paying for Sativex Figure 16 shows that 16% (n=15) of people currently taking Sativex had paid for it at some point. 13% (n=12) 1% (n=1) 2% (n=2) Yes, I have paid privately for Sativex Yes, my family have paid privately for Sativex Yes I have paid privately for Sativex with help from my family No 84% (n=80) Figure 16: Breakdown of the number of respondents who were currently taking Sativex and how they paid 18

19 Of those who had paid for their Sativex at some point, 33% (n=5) had always paid privately for it meaning that they were at the time of filling out the questionnaire. Of those who had not always paid privately, 40% (n=4) were currently paying for it. This means that 9% (n=9) of people currently taking Sativex were paying privately for it when completing the questionnaire. 67% (n=10) 33% (n=5) Yes No 60% (n=6) 40% (n=4) Figure 17: Breakdown of whether people had always paid privately for Sativex Figure 18: Breakdown of whether people currently paid privately for Sativex 19

20 Frequency Accessing Sativex 82% (n=78) of people currently taking Sativex consider access to it essential or high priority % (n=2) 1% (n=1) 15% (n=14) 23% (n=22) 59% (n=56) Not a priority Low priority Medium priority High priority Essential Extent access to Sativex is currently a priority Figure 19: Extent access to Sativex was a priority for respondents who were taking it at the time of completing the questionnaire Potential limitations This research was primarily limited by the method of recruitment. Respondents followed the MS Society social media channels or were on the UK MS Register, meaning that they were likely to be a more informed and engaged group than the general population. The fact that the questionnaire was online meant that only people with internet access could complete it. 20

21 Summary/conclusions This report shows that access to Sativex is highly important for many people with MS. 22% of those who had heard of Sativex reported that it was currently high priority or essential for them. Moreover 82% of those currently taking Sativex explained that access was essential or a high priority for them at present. Nearly half of the respondents who had never taken Sativex had either been told by a healthcare professional or believed that it was not available to them. Furthermore the main reason people gave for never taking Sativex was that it was not available in the area where they live, followed by the belief that they would have to pay privately for it. These two factors seem to indicate an MS lottery surrounding Sativex, were where someone lives and the amount of money they have impacts on whether they have access to Sativex. In addition to this one in five people from this group reported access as being high priority or essential for them currently. 20% of those who had previously taken Sativex also reported that access was a high priority or essential for them currently. The main reasons people were no longer taking Sativex was that they felt it was not helping, they were experiencing side effects and that it was no longer available in the area that they live. The majority of respondents had experienced muscle stiffness, spasticity and spasms during the course of their MS but only 2% of people were taking Sativex at the time of completing the questionnaire and only 5% had taken Sativex at some point. Whilst this may seem low it is important to note that Sativex is only licensed to treat people who have already tried other types of spasticity medication. Overall the data captured in this questionnaire demonstrates the importance that access to Sativex can have for some people with MS. Worryingly it also indicates that where someone lives and the amount of money they have can influence whether they are taking the treatment. References Dorning, H, Luck, G. and Holloway, E. (2013) A lottery of treatment and care: MS services across the UK technical report 21

22 Appendix 1 - Questionnaire Managing the symptoms of MS Intro to questionnaire S1 Page exit logic: Page LogicIF: Question "Do you live in the UK?" #1 is one of the following answers ("No") THEN: Disqualify and display: "Thank you for your interest in this questionnaire, we really appreciate it. Unfortunately it is only for people living in the UK." 1) Do you live in the UK?* ( ) Yes ( ) No S2-S4 Page exit logic: Page LogicIF: (Question "Have you been diagnosed with MS by a neurologist?" #4 is one of the following answers ("No") OR Question "How old are you?" #3 is one of the following answers ("Under 18")) THEN: Disqualify and display: "Thank you for your interest in this questionnaire, we really appreciate it. Unfortunately it is only for people who have been diagnosed with MS by a neurologist and who are over the age of 18." 22

23 2) Are you male or female?* ( ) Male ( ) Female 3) How old are you?* ( ) Under 18 ( ) ( ) ( ) ( ) 55+ 4) Have you been diagnosed with MS by a neurologist?* ( ) Yes ( ) No S5-S6 5) What year were you diagnosed with MS?* ( ) 2014 ( ) 2013 ( ) 2012 ( ) 2011 ( ) 2010 ( ) 2009 ( )

24 ( ) 2007 ( ) 2006 ( ) 2005 ( ) 2004 ( ) 2003 ( ) 2002 ( ) 2001 ( ) 2000 ( ) 1999 ( ) 1998 ( ) 1997 ( ) 1996 ( ) 1995 ( ) 1994 ( ) 1993 ( ) 1992 ( ) 1991 ( ) 1990 ( ) 1989 ( ) 1988 ( ) 1987 ( ) 1986 ( ) 1985 ( )

25 ( ) 1983 ( ) 1982 ( ) 1981 ( ) 1980 ( ) 1979 ( ) 1978 ( ) 1977 ( ) 1976 ( ) 1975 ( ) 1974 ( ) 1973 ( ) 1972 ( ) 1971 ( ) 1970 ( ) 1969 ( ) 1968 ( ) 1967 ( ) 1966 ( ) 1965 ( ) 1964 ( ) 1963 ( ) 1962 ( ) 1961 ( )

26 ( ) 1959 ( ) 1958 ( ) 1957 ( ) 1956 ( ) 1955 ( ) 1954 ( ) 1953 ( ) 1952 ( ) 1951 ( ) 1950 ( ) 1949 ( ) 1948 ( ) 1947 ( ) 1946 ( ) 1945 ( ) 1944 ( ) 1943 ( ) 1942 ( ) 1941 ( ) 1940 ( ) 1939 ( ) 1938 ( ) 1937 ( )

27 ( ) 1935 ( ) 1934 ( ) 1933 ( ) 1932 ( ) 1931 ( ) 1930 ( ) 1929 ( ) 1928 ( ) 1927 ( ) 1926 ( ) 1925 ( ) 1924 ( ) 1923 ( ) 1922 ( ) 1921 ( ) ) What type of MS do you have at present?* ( ) Relapsing remitting MS (RRMS) ( ) Secondary progressive MS (SPMS) ( ) Primary progressive MS (PPMS) ( ) I'm not sure 27

28 S7 7) We know that people with MS experience many different symptoms and that the below is by no means an exhaustive list. Please indicate below which symptoms you have experienced in the course of your MS.* [ ] Bladder problems [ ] Bowel problems [ ] Depression and anxiety [ ] Difficulties with walking [ ] Eye and sight problems [ ] Fatigue [ ] Muscle stiffness, spasticity and spasms [ ] Pain [ ] Problems with balance and co-ordination [ ] Problems with memory, attention and problem solving (cognition) [ ] Sexual problems [ ] Speech problems [ ] Swallowing problems [ ] Tremor [ ] Other...please specify: S8 28

29 Piping: Piped Values From Question 7. (We know that people with MS experience many different symptoms and that the below is by no means an exhaustive list. Please indicate below which symptoms you have experienced in the course of your MS.) 8) Please indicate below which symptoms you are currently experiencing.* [ ] None S9 Page exit logic: Not heard of Sativex, skip to questions about CannabisIF: Question "Have you ever heard of Sativex (nabiximols)?" #9 is one of the following answers ("No","I'm not sure") THEN: Jump to page 23 - Introduction to cannabis 9) Have you ever heard of Sativex (nabiximols)?* ( ) Yes ( ) No ( ) I'm not sure S10 29

30 Page exit logic: Never taken Sativex, go to ever consideredif: Question "Have you ever taken Sativex (nabiximols) to try to manage the symptoms of your MS?" #10 is one of the following answers ("No") THEN: Jump to page 19 - A11 10) Have you ever taken Sativex (nabiximols) to try to manage the symptoms of your MS?* ( ) Yes ( ) No A1 Page exit logic: Not currently taking Sativex, go to A6IF: Question "Are you currently taking Sativex (nabiximols) to try to manage the symptoms of your MS?" #11 is one of the following answers ("No") THEN: Jump to page 14 - A6 11) Are you currently taking Sativex (nabiximols) to try to manage the symptoms of your MS?* ( ) Yes ( ) No A2 Piping: Piped Values From Question 8. (Please indicate below which symptoms you are currently experiencing.) 30

31 12) What symptoms are you currently taking Sativex (nabiximols) for? (please tick all that apply)* [ ] I'm not sure [ ] None of the symptoms listed here 13) If you feel that you are taking Sativex (nabiximols) for a different reason than those given above, please explain in the box below A3 Page exit logic: Never paid privately for Sativex, go to intro to cannabisif: Question "Have you/your family ever paid privately for your Sativex (nabiximols)?" #14 is one of the following answers ("No") THEN: Jump to page 22 - A14 14) Have you/your family ever paid privately for your Sativex (nabiximols)?* ( ) No ( ) Yes, I have paid privately for Sativex (nabiximols) ( ) Yes, my family have paid privately for Sativex (nabiximols) ( ) Yes, I have paid privately for Sativex (nabiximols) with help from family 31

32 A4 Page exit logic: Always paid privately for Sativex, go to intro to cannabisif: Question "Have you/your family always paid privately for your Sativex (nabiximols)?" #15 is one of the following answers ("Yes") THEN: Jump to page 22 - A14 15) Have you/your family always paid privately for your Sativex (nabiximols)?* ( ) Yes ( ) No A5 Page exit logic: Go to intro to cannabisif: Question "Do you/your family currently pay privately for your Sativex (nabiximols)?" #16 is one of the following answers ("Yes","No") THEN: Jump to page 22 - A14 16) Do you/your family currently pay privately for your Sativex (nabiximols)?* ( ) Yes ( ) No A6 32

33 Piping: Piped Values From Question 7. (We know that people with MS experience many different symptoms and that the below is by no means an exhaustive list. Please indicate below which symptoms you have experienced in the course of your MS.) 17) What symptoms were you taking Sativex (nabiximols) for? (please tick all that apply)* [ ] I'm not sure [ ] None of the symptoms listed here 18) If you feel that you were taking Sativex (nabiximols) for a different reason that those given above, please explain in the box below A7 Page exit logic: Never paid privately for Sativex, go to reasons for stoppingif: Question "Did you/your family ever pay privately for your Sativex (nabiximols)?" #19 is one of the following answers ("No") THEN: Jump to page 17 - A9 19) Did you/your family ever pay privately for your Sativex (nabiximols)?* ( ) No ( ) Yes, I have paid privately for Sativex (nabiximols) ( ) Yes, my family have paid privately for Sativex (nabiximols) 33

34 ( ) Yes, I have paid privately for Sativex (nabiximols) with help from my family A8 20) Did you/your family always pay privately for your Sativex (nabiximols)?* ( ) Yes ( ) No A9 Action: Custom Script: Hide pregnancy row for men 21) Please indicate to what extent each of the following statements apply to you. I stopped taking Sativex (nabiximols) because...* Not at all To a small extent Somewhat To a large extent Completely...I believed it was not helping my 34

35 symptoms...of the side effects I was experiencing...i was concerned about the potential side effects associated with it...i was breastfeeding, pregnant or trying to conceive...a specific medical issue meant that it was no longer suitable for me (e.g. seizures)...i switched to a treatment that I thought may be more effective 35

36 A10 Action: Custom Script: Hide paying privately options if never paid for it Page exit logic: Answered all Sativex questions, go to intro to cannabisif: Question " I was no longer experiencing the symptoms I originally started taking it for" THEN: Jump to page 22 - A14 22) Please indicate to what extent each of the following statements apply to you. I stopped taking Sativex (nabiximols) because...* Not at all To a small extent Somewhat To a large extent Completely I wanted to manage my MS without taking drugs I no longer 36

37 received it for free and I had to start paying privately for it I could no longer continue paying privately for it it was no longer available in the area that I live I was no longer experiencing the symptoms I originally started taking it for 23) If you feel that you stopped taking Sativex (nabiximols) for a different reason than those given above, please explain in the box below 37

38 A11 Page exit logic: Not considered Sativex, go to intro to cannabisif: Question "Have you ever considered taking Sativex (nabiximols) to manage the symptoms of your MS?" #24 is one of the following answers ("No","Yes, but I was told by a healthcare professional that it is not available to me","i'm not sure") THEN: Jump to page 22 - A14 24) Have you ever considered taking Sativex (nabiximols) to manage the symptoms of your MS?* ( ) No ( ) Yes, I have considered it and it has been available to me ( ) Yes, but to the best of my knowledge it is not available to me. ( ) Yes, but I was told by a healthcare professional that it is not available to me ( ) I'm not sure A12 Action: Custom Script: Hide pregnant row for men 38

39 25) Please indicate to what extent each of the following statements apply to you. I am not taking Sativex (nabiximols) because * Not at all To a small extent Somewhat To a large extent Completely I believe it would not help my symptoms I am concerned about the potential side effects associated with it I am breastfeeding, pregnant or trying to conceive...a specific medical issue means that it is not suitable for me (e.g. seizures) 39

40 ...I am taking a treatment that I think may be more effective A13 26) Please indicate to what extent each of the following statements apply to you. I am not taking Sativex (nabiximols) because * Not at all To a small extent Somewhat To a large extent Completely I want to manage my MS without taking drugs I would 40

41 have to pay privately for it it is not available in the area that I live 27) If you feel that you are not taking Sativex (nabiximols) for a different reason than those given above, please explain in the box below A14 28) To what extent is access to Sativex (nabiximols) a priority for you currently?* ( ) Not a priority ( ) Low priority ( ) Medium priority ( ) High priority ( ) Essential 41

42 Introduction to cannabis B1 Page exit logic: Never used cannabis, go to ever consideredif: Question "Have you ever used cannabis (marijuana) to try to manage the symptoms of your MS?" #29 is one of the following answers ("No") THEN: Jump to page 36 - B13 29) Have you ever used cannabis (marijuana) to try to manage the symptoms of your MS?* ( ) Yes ( ) No B2 Page exit logic: Not currently using cannabis, go to symptoms were taking it forif: Question "Are you currently using cannabis (marijuana) to try to manage the symptoms of your MS?" #30 is one of the following answers ("No") THEN: Jump to page 31 - B8 30) Are you currently using cannabis (marijuana) to try to manage the symptoms of your MS?* ( ) Yes ( ) No 42

43 B3 Piping: Piped Values From Question 8. (Please indicate below which symptoms you are currently experiencing.) 31) What symptoms are you currently using cannabis (marijuana) for? (please tick all that apply)* [ ] I'm not sure [ ] None of the symptoms listed here 32) If you feel that you are using cannabis (marijuana) for a different reason that those given above, please explain in the box below B4 Page exit logic: If only tick one go to question B6IF: (((Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #33 is exactly equal to ("Edible (cooked in food)") OR Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #33 is exactly equal to ("Smoking")) OR Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #33 is exactly equal to ("Infused in a hot liquid")) OR Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #33 is exactly equal to ("Vaporizing (inhale active ingredients as a vapour instead of smoke)")) THEN: Jump to page 29 - B6 43

44 33) In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)* [ ] Edible (cooked in food) [ ] Smoking [ ] Infused in a hot liquid [ ] Vaporizing (inhale active ingredients as a vapour instead of smoke) [ ] Other, please specify: B5 Piping: Piped Values From Question 33. (In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)) 34) In which of the following ways do you most frequently use cannabis (marijuana)?* B6 35) Please indicate to what extent each of the following statements apply to you. I am using cannabis (marijuana) because * Not at all To a small extent Somewhat To a large extent Completely 44

45 I could not access licensed treatments for the symptoms of my MS I believe it is a natural remedy I believe it is more effective than licensed treatments B7 Page exit logic: Answered all cannabis questions, go to B17IF: Question " the benefits outweigh the side effects" THEN: Jump to page 40 - B17-B18 45

46 36) Please indicate to what extent each of the following statements apply to you. I am using cannabis (marijuana) because * Not at all To a small extent Somewhat To a large extent Completely licensed symptom management treatments have not helped my MS it is less expensive than other symptom management options the benefits outweigh the side effects 37) If you feel that you are using cannabis (marijuana) for a different reason that those given above, please explain in the box below 46

47 B8 Piping: Piped Values From Question 7. (We know that people with MS experience many different symptoms and that the below is by no means an exhaustive list. Please indicate below which symptoms you have experienced in the course of your MS.) 38) What symptoms were you using cannabis (marijuana) for? (please tick all that apply)* [ ] I'm not sure [ ] None of the symptoms listed here 39) If you feel that you were using cannabis (marijuana) for a different reason that those given above, please explain in the box below B9 47

48 Page exit logic: Go to B11 if only used cannabis in one wayif: (((Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #40 is exactly equal to ("Edible (cooked in food)") OR Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #40 is exactly equal to ("Smoking")) OR Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #40 is exactly equal to ("Infused in a hot liquid")) OR Question "In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)" #40 is exactly equal to ("Vaporizing (inhale active ingredients as a vapour instead of smoke)")) THEN: Jump to page 34 - B11 40) In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)* [ ] Edible (cooked in food) [ ] Smoking [ ] Infused in a hot liquid [ ] Vaporizing (inhale active ingredients as a vapour instead of smoke) [ ] Other, please specify: B10 Piping: Piped Values From Question 40. (In which of the following ways have you used cannabis (marijuana)? (please tick all that apply)) 41) In which of the following ways did you most frequently use cannabis (marijuana)?* B11 Action: Custom Script: Hide pregnant row for men 48

49 42) Please indicate to what extent each of the following statements apply to you. I stopped using cannabis (marijuana) because * Not at all To a small extent Somewhat To a large extent Completely I believed it was not helping my symptoms of the side effects I was experiencing I was concerned about the potential side effects associated with it I was breastfeeding, pregnant or trying to conceive a specific 49

50 medical issue meant that it was no longer suitable for me (e.g. seizures)...i switched to a treatment that I thought may be more effective B12 Page exit logic: Answered all questions about cannabis, go to C1IF: Question " I was no longer experiencing the symptoms I originally started taking it for" THEN: Jump to page 40 - B17-B18 43) Please indicate to what extent each of the following statements apply to you. I stopped using cannabis (marijuana) because * Not at all To a small extent Somewhat To a large extent Completely 50

51 I wanted to manage my MS without taking drugs I wanted to manage my MS without taking illegal drugs of the financial cost I was concerned about prosecution I was no longer experiencing the symptoms I originally started taking it for 51

52 44) If you feel that you stopped using Cannabis (marijuana) for a different reason than those given above, please explain in the box below B13 Page exit logic: Never thought about cannabis, go to legalisation question B17IF: Question "Have you ever thought about using cannabis (marijuana) to try to manage the symptoms of your MS? (i.e. has it ever crossed your mind)" #45 is one of the following answers ("No") THEN: Jump to page 40 - B17-B18 45) Have you ever thought about using cannabis (marijuana) to try to manage the symptoms of your MS? (i.e. has it ever crossed your mind)* ( ) Yes ( ) No B14 52

53 Page exit logic: Never considered cannabis, go to section CIF: Question "Have you ever considered using cannabis (marijuana) to try to manage the symptoms of your MS? (i.e. have you weighed up the pros and cons of using cannabis (marijuana))" #46 is one of the following answers ("No") THEN: Jump to page 40 - B17-B18 46) Have you ever considered using cannabis (marijuana) to try to manage the symptoms of your MS? (i.e. have you weighed up the pros and cons of using cannabis (marijuana))* ( ) Yes ( ) No B15 Action: Custom Script: Hide question row for men 47) Please indicate to what extent each of the following statements apply to you. I am not using cannabis (marijuana) because * Not at all To a small extent Somewhat To a large extent Completely I believe it would not 53

54 help my symptoms I am concerned about the potential side effects associated with it I am breastfeeding, pregnant or trying to conceive a specific medical issue means that it is not suitable for me (e.g. seizures) I want to manage my MS without taking drugs 54

55 B16 48) Please indicate to what extent each of the following statements apply to you. I am not using cannabis (marijuana) because * Not at all To a small extent Somewhat To a large extent Completely I want to manage my MS without taking illegal drugs I don t agree with using any illegal drugs of the financial cost I am concerned about prosecution 55

56 49) If you feel that you are not using cannabis (marijuana) for a different reason than those given above, please explain in the box below B17-B18 50) In your opinion should the medicinal use of cannabis (marijuana) be legalised?* ( ) Yes ( ) No ( ) I'm not sure 51) To what extent is the legalisation of medicinal cannabis (marijuana) a priority for you currently?* ( ) Not a priority ( ) Low priority ( ) Medium priority ( ) High priority ( ) Essential C1-C2 56

57 52) Please indicate to what extent the following information sources have played a useful role in making decisions on how to manage the symptoms of your MS* Not at all useful Slightly useful Somewhat useful Very useful Extremely useful Not applicable/ I did not receive information from this source My neurologist ( ) My MS nurse ( ) My GP ( ) Discussions with friends and family MS Society (for example helpline, website, printed resources, local branch) MS Trust (for example website, Free ( ) ( ) ( ) 57

58 Phone Information Service, publications) Other internet sources not including MS Society or MS Trust (for example NHS Choices, Patient.co.uk) Other online forums (for example Facebook, ShiftMS) ( ) ( ) 53) If you received information from another source that is not listed above, please describe this in the box below 58

59 C3 54) If there is anything else you would like to tell us about in relation to the ways you are managing the symptoms of your MS, please write your comments in the box below Thank You! Action: URL Redirect: Go to Treat me right website 59

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