Right treatment, right time?

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1 Right treatment, right time? How people with MS make decisions about disease modifying drugs Diane Redfern-Tofts, Ed Holloway Multiple Sclerosis Society April

2 Contents Executive Summary... 5 Introduction... 6 Method... 7 Questionnaire design... 7 Respondents... 8 Demographics... 9 DMD decisions a summary of findings Awareness of DMDs Accessing information about DMDs Speaking to healthcare professionals Access to healthcare professionals and awareness of DMDs Making decisions Exploring and reflecting on decisions The decision to start taking a DMD Awareness of DMDs Speaking to healthcare professionals Reasons to start taking a DMD Reasons to start taking a DMD in further depth Feelings about starting a DMD Summarising the decision to start taking a DMD The decision not to take a DMD Awareness of options

3 Speaking to healthcare professionals Discussing DMDs with a neurologist Reasons not to take a DMD Reasons not to take a DMD in further depth Feelings about not taking DMDs Summarising the decision not to take a DMD The decision to change DMD Awareness of options Speaking to healthcare professionals Reasons for changing DMD Reasons for changing DMD in further depth Feelings about the change Summarising the decision to change The decision to stop taking a DMD Awareness of DMDs Speaking to healthcare professionals Reasons for stopping DMDs Reasons for stopping DMDs in further depth Feelings about stopping DMDs Summary of decision to stop taking a DMD Potential limitations Summary/conclusions References Appendix 1: Traditional Decisional Conflict Scale (DCS) - Statement Format: 16 item, 5 response categories

4 Appendix 2: Questionnaire.50 4

5 Executive Summary Evidence shows that disease modifying drugs (DMDs) can reduce the number of relapses that a person with MS experiences. However DMD use in the UK is lower than in the USA and comparable nations in Europe. Research shows a postcode lottery of access to specialists, and indicates significant national and local variation in DMD use in the UK. The research presented in this report provides a detailed exploration of decisions regarding the use of DMDs for people with relapsing remitting MS in the UK. It demonstrates a vast array of factors that contribute to the DMD decision making process and how the experiences of each individual impact upon the decision that is reached. Awareness of DMDs Awareness of DMDs is highly diverse. Whilst many people taking their first DMD are aware of the other options available to them (58 per cent had heard of at least five DMDs), others are oblivious to them (23 per cent had only heard of the DMD they were taking). One in five people have either not heard of any DMDs, or have only heard of one. Awareness of newer treatments is dramatically low, providing a potential barrier to people with relapsing remitting MS accessing them. Accessing information about DMDs MS nurses and neurologists are reported as being the most useful sources of information during the DMD decision process. However 20 per cent of people have not spoken to a neurologist and 16 per cent have not spoken to an MS nurse within the last 12 months. People who have not heard of any DMDs are more likely to have never spoken to an MS nurse and have spoken to a neurologist longer ago. Whilst many people feel that they have made informed decisions, others feel that they have not had access to sufficient information about DMDs. People who have never taken DMDs feel least informed about them and are the most likely to be unaware of the available options. In some cases this is the reason they are not taking them. The level of involvement in DMD decisions varies considerably, with some individuals feeling entirely passive in the process of decision making. Some people feel that they are told what to do by healthcare professionals and others are simply not given any alternative options. Decisions about DMDs are inescapably difficult and complex. When making these decisions people need access to the best available evidence, and expert professionals to help them understand this evidence as well as to support them in re-evaluating decisions on an ongoing basis. Having access to all the appropriate information and receiving the appropriate support will in no way make this an easy decision, but it can help ensure that people make informed decisions about getting the right treatment at the right time. 5

6 Introduction Evidence from clinical trials show that disease modifying drugs (DMDs) can reduce the number of relapses that a person with MS experiences1. There is also evidence that these treatments, when used later on in the condition, are less likely to have a beneficial effect. However it is not yet known if any of the drugs can slow the rate of disability in the long term, even though such a link is scientifically plausible. Emerging, although still contentious, evidence suggests that using DMDs, and in particular using them earlier in the condition, may have a meaningful impact on health outcomes. For more information on the range of treatments available for relapsing remitting MS please see the MS Society website ( or call and ask for a copy of the MS Essentials on DMDs. DMD use in the UK is lower than in the USA and comparable nations in Europe. A lottery of treatment and care: MS services across the UK 2 revealed a postcode lottery of access to MS professionals/specialists, and indicated that DMD use in the UK varied significantly at a national and local level. This report presents the results of a research project to explore decisions regarding the use of DMDs in detail, to help understand the factors that influence the use of DMDs and to discover how informed people with relapsing remitting MS feel during the decision making process. All DMDs carry side effects, and the benefits and side effects that any one individual will experience will vary, in a largely unpredictable way, from person to person. There are also not just medical issues to consider. Most DMDs cannot be taken during pregnancy meaning that for many people deciding to take a DMD will mean delaying starting a family. Taking a DMD also means disruption to day to day life whether through having to regularly inject, or to attend hospital appointments for infusions or monitoring. Religious or ethical considerations such as views on animal testing may also play a role. Whether or not to take DMDs at all, when to start taking them, and which DMD to take, all therefore remain highly personal decisions. When making this decision people will have to consider a number of complex issues, and ultimately decide which option they feel is right for them at the time. When making this decision people will need access to the best available evidence. Although this evidence cannot give them certainty as to what the impact of a particular decision will be, it can give them an understanding of the possible outcomes. To help them to understand this evidence people need expert professional advice. In particular they will need access to health professionals who are able to impeccably assess their clinical situation, understand the issues that matter most to them, and provide them with the relevant evidence in a way in which they can understand it. It is likely people will also want information and evidence from trusted and independent organisations to help them to understand certain issues or concepts, or to provide reassurance that the information from their health professionals represents the consensus of the community. 6

7 It is also vital to understand that, even with the benefit of hindsight, people can never be certain that the decision they made was the right one. People will never be sure that the relapses or disability they are experiencing could not have been prevented by earlier treatment, or that they haven t needlessly exposed themselves to potential side effects and the impact of taking treatments for no real benefit. People will therefore need reassurance that the decision they made was inescapably difficult and complex, and that they made the right decision for them, at that time, given the evidence available. Equally, people will need the opportunity to re-consider - to stop, start, or change treatment. This could be because their clinical situation changes, because new evidence or treatments emerge, or because the things that are important to them have changed. People need the support to re-evaluate their decisions on an ongoing basis. Method Questionnaire design An online questionnaire was designed to measure the factors that influence the use of DMDs, as well as how informed people felt making decisions about DMDs. It was designed by the MS Society research team, other than the inclusion of 16 items from the Decisional Conflict Scale (DCS)3. The complex nature of the questionnaire meant that the number of items varied depending on how people answered specific questions. All respondents answered the initial 7 items; focusing on demographics, year of diagnosis, most recent interactions with health professionals and awareness of DMDs. The second part of the questionnaire focused on decision making, and was thus split into four branches: Branch 1 - Start: for those who were taking their first DMD Branch 2 - Not start: for those who had never taken a DMD Branch 3 - Change: for those who were currently taking a DMD and had taken a different one previously Branch 4 - Stop: for those who had taken a DMD previously, but were not currently taking one Each of the four branches included items about reasons behind decisions, knowledge of DMDs and the Decisional Conflict Scale. 7

8 Decisional conflict has been defined as: A state of uncertainty about a course of action. Such uncertainty is more likely when a person is confronted with decisions involving risk or uncertainty of outcomes, when high-stakes choices with significant potential gains and losses are entertained, when there is a need to make value trade-offs in selecting a course of action, or when anticipated regret over the positive aspects of rejected options is probable (O Connor, 2010: p2). People making decisions about DMDs are likely to experience some level of decisional conflict. Responders from the four decision categories filled out the DCS (see Appendix 1). The questionnaire included both quantitative and qualitative questions. Qualitative responses are provided in this report using pseudonyms. 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 2 for a full list of questionnaire items. Respondents The questionnaire was promoted using MS Society social media channels between 21 November and 6 December A total of 1842 people responded to the questionnaire. The data from 692 people was not included in the analysis, for a variety of reasons: Partial responses (n=498) Branching problems (n=4) Disqualification due to not having relapsing remitting MS, not living in the UK, or being under the age of 18 (n=190) Data from the remaining 1150 people with relapsing remitting MS who completed the questionnaire was used for analysis. 8

9 Demographics 1150 people completed the questionnaire 79% (n=906) females and 21% (n=244) males. Most of the respondents (66%) were aged between 35 and 54 years. 79% (n=906) 21% (n=244) 66.0% (n=759) 17.5% (n=201) 14.0% (n=161) 2.5% (n=29) Age of respondents Figure 1: Breakdown of the age of respondents 9

10 42.5% (n=489) Figure 2 shows that 43% (n=489) of people were diagnosed with relapsing remitting MS between 2009 and % (n=306) 15.7% (n=180) 0.3% (n=3) 0.4% (n=5) 0.8% (n=9) 1.4% (n=16) 4.0% (n=46) 8.3% (n=96) Year diagnosed with relapsing remitting MS Figure 2: Breakdown of when respondents were diagnosed with relapsing remitting MS 10

11 Frequency DMD decisions a summary of findings Awareness of DMDs With such a low number of eligible people taking DMDs in the UK, it was important to find out if and how many DMDs respondents had heard of. At the time of the survey, nine treatments were licensed in the UK for relapsing remitting MS. Respondents were presented with a list of all licensed DMDs with both their brand and scientific names, and asked to indicate which they had heard of. Figure 3 shows the considerable variation in responses received regarding the number of DMDs people were aware of. The bimodal distribution indicates the presence of two groups: The majority of people were fairly evenly distributed around the major mode of six DMDs. 57% (n=657) of people had heard of five or more DMDs and 5% (n=57) had heard of all nine DMDs % (n=84) 13% (n=153) 6% (n=64) 6% (n=71) 11% (n=121) 14% (n=158) 19% (n=213) 12% (n=143) 8% (n=86) 5% (n=57) The other group peaked at the minor mode of one DMD. 7% (n=84) of respondents had not heard of any DMDs and a further 13% (n=153) had only heard of one DMD. This means that 20% of people had either not heard of any DMDs or had only heard of one Number of DMDs heard of Figure 3: A breakdown of the number of DMDs respondents were aware of 11

12 Table 1 shows a breakdown of the number of people who had heard of each individual DMD. The majority of respondents had heard of each of Avonex, Betaferon, Copaxone, Rebif and Tysabri. Just over half of respondents had heard of Gilenya. However, only 23% (n=262) were aware of Lemtrada, 16% (n=187) were aware of Extavia and 12% (n=132) had heard of Aubagio. Table 1: Awareness levels for each DMD Awareness of DMD Avonex (beta interferon- 1a) 802 (70%) Betaferon (beta interferon- 1b) 859 (75%) Copaxone (glatiramer acetate) 820 (71%) Rebif (beta interferon- 1a) 822 (72%) Average awareness level for the above four 'risk sharing scheme' drugs 826 (72%) Availability of treatment at time of answering questionnaire Available through the Department of Health 'Risk Sharing Scheme' from 2002 for people with relapsing remitting MS who meet specific eligibility criteria Extavia (beta interferon- 1b) 187 (16%) Launched in 2009 and available in a similar way to the 'Risk Sharing Scheme' drugs Tysabri (natalizumab) 777 (68%) Gilenya (fingolimod) 587 (51%) Lemtrada (alemtuzumab) 262 (23%) Aubagio (Teriflunomide) 132 (12%) Approved for use on the NHS in 2007 for people with relapsing remitting MS who meet specific eligibility criteria Approved for use on the NHS in 2012 for people with relapsing remitting MS who meet specific eligibility criteria Undergoing review for possible use on the NHS at the time of the questionnaire 12

13 Accessing information about DMDs There are many ways that people with MS could find out information about DMDs. This section of the report presents the data gathered in relation to information sources and accessing health professionals to talk about MS. 13% (n=106) 20% (n=157) 67% (n=535) 17% (n=133) 24% (n=195) 31% (n=245) 32% (n=257) 51% (n=408) 40% (n=319) 36% (n=284) 29% (n=231) 46% (n=365) 25% (n=197) 40% (n=322) 30% (n=236) 41% (n=328) 30% (n=236) 29% (n=234) 76% (n=604) 16% (n=126) 9% (n=68) Information sources Regardless of their DMD taking history, respondents were asked to indicate the extent to which a variety of information sources were useful in the DMD decision process. MS nurses were seen as playing the most useful role in decision making, with 67% (n=535) finding them very or extremely useful. This was followed by 51% (n=408) of people finding neurologists very or extremely useful. MS Nurse Neurologist Friends and family MS Society MS Trust Other internet sources GP Very/extremely useful Slightly/somewhat useful Not applicable/not at all useful Figure 4: Extent information sources played a useful role in the DMD decision process 13

14 29% (n=234) 5% (n=39) 66% (n=525) Very/extremely satisfied Slightly/ somewhat satisfied Not at all satisfied Figure 5 shows how satisfied people were with the information they received overall during the process of decision making. 66% (n=525) of respondents were very or extremely satisfied with the information received and 5% (n=39) reported being not at all satisfied. As figure 4 indicated that MS nurses and neurologists played the most useful role in providing information during the decision making process, conversations with these healthcare professionals could play a major role in overall satisfaction levels with the information received. Figure 5: Satisfaction with the information received overall during the DMD decision process Speaking to healthcare professionals All respondents were asked when they last spoke to a GP, MS nurse or neurologist about their MS. Table 2 shows that the majority of people had spoken to a health professional in the past six months. Table 2: Most recent interaction with healthcare professionals GP MS nurse Neurologist In the past 6 months 656 (57.0%) 783 (68.1%) 631 (54.9%) Between 6 months and a year ago 198 (17.2%) 181 (15.7%) 290 (25.2%) Between 1 and 2 years ago 158 (13.7%) 70 (6.1%) 113 (9.8%) More than 2 years ago 96 (8.3%) 66 (5.7%) 116 (10.1%) Never 42 (3.7%) 50 (4.3%) 0 (-) Total 1150 (100%) 1150 (100%) 1150 (100%) 68% (n=783) of people had spoken to an MS nurse in the past six months and 55% (n=631) had talked to a neurologist. 20% (n=229) of people had not spoken to a neurologist in the last 12 months, with 10% (n=116) not having spoken to one in over two years. 16% (n=186) of respondents had not talked to an MS nurse within the last 12 months, with 4% (n=50) of people never having spoken to an MS nurse. 14

15 Access to healthcare professionals and awareness of DMDs Table 3 shows when the 84 people who had not heard of any DMDs last spoke to a GP, MS nurse or neurologist about their MS. 18% (n=15) of respondents not aware of any DMDs had never spoken to an MS nurse about their MS, and a further 12% (n=10) last spoke to an MS nurse more than 2 years ago. All of the people surveyed had spoken to a neurologist about their MS, but 19% (n=16) of those who had not heard of any DMDs last spoke to a neurologist more than 2 years ago. When comparing those who had not heard of any DMDs to all of the respondents, access to GPs was broadly similar. However those who were not aware of any DMDs were more likely to never have had access to an MS nurse and to have spoken to a neurologist longer ago. Table 3: Most recent interaction with healthcare professionals for people who had not heard of any DMDs GP MS nurse Neurologist In the past 6 months 47 (56.0%) 38 (45.2%) 32 (38.1%) Between 6 months and a year ago 14 (16.7%) 17 (20.2%) 22 (26.2%) Between 1 and 2 years ago 10 (11.9%) 4 (4.8%) 14 (16.7%) More than 2 years ago 10 (11.9%) 10 (11.9%) 16 (19.0%) Never 3 (3.6%) 15 (17.9%) 0 (-) Total 84 (100%) 84 (100%) 84 (100%) 15

16 Making decisions There were four different types of decision about DMDs captured in the questionnaire: 1. Decision to start taking a DMD; those taking their first DMD 2. Decision not to take a DMD; those who had never taken a DMD 3. Decision to change DMD; those who were currently taking a DMD and had taken a different one previously 4. Decision to stop taking a DMD; those who had taken a DMD previously but were not currently taking one 86% (n=984) of the total number of respondents answered the decision branches of the questionnaire. This is because the other respondents were: Taking part in a clinical trial (n=59) Not aware of any DMDs (n=84) Incorrectly reported being currently or previously on a DMD, when they were taking a different form of treatment (n=23) This is why the data presented here is from 984 respondents and not 1150 respondents. 9% (n=91) Decision to start taking a DMD Figure 6 shows that 43% (n=427) of people were currently taking their first DMD. 23% (n=223) 43% (n=427) Decision not to take a DMD Decision to change DMD A quarter of respondents (n=243) had never taken a DMD. 23% (n=223) of people had changed DMD; so they switched from a previous DMD to the one that they were currently taking. 25% (n=243) Decision to stop taking a DMD 9% (n=91) of people stopped taking DMDs; so they were taking one previously but were not taking a DMD at the time of completing the questionnaire. Figure 6: Breakdown of the number of respondents in each of four decision types 16

17 Exploring and reflecting on decisions The remainder of this report presents the data gathered in relation to the four decision types, each of the decision sections include data regarding: Most recent interactions with healthcare professionals Awareness of DMDs Reasons behind the decision - respondents were asked to indicate the extent to which they agreed or disagreed with a list of reason statements and were also given the opportunity to explain if they felt the decision was made for a different reason than those listed Feelings about the decision - respondents were asked to fill out the Decisional Conflict Scale (DCS) 17

18 Table 4 shows the mean decisional conflict score for each type of decision, ranging from 0 (no decisional conflict) to 100 (extremely high decisional conflict). Scores lower than 25 are associated with implementing decisions, whereas scores over 37.5 are associated with decision delay or feeling unsure about implementing the decision (O Connor, 2010). The mean scores out of 100 for each of the five subscales are also presented in the table: 1. Uncertainty subscore Scores range from 0 (feels extremely certain about the best choice) to 100 (feels extremely uncertain about the best choice) 2. Informed subscore Scores range from 0 (feels extremely informed) to 100 (feels extremely uninformed) 3. Values Clarity subscore Scores range from 0 (feels extremely clear about personal values for benefits and risks/side effects) to 100 (feels extremely unclear about personal values) 4. Support subscore Scores range from 0 (feels extremely supported in decision making) to 100 (feels extremely unsupported in decision making) 5. Effective decision subscore Scores range from 0 (good decision) to 100 (bad decision) Both the numbers of people in the not start and stop categories are less than in figure 6. This is because the other people were not told they were eligible to take DMDs. Table 4: Mean DCS scores by type of decision Change (n=223) Mean (SD) Not start (n=96) Mean (SD) Stop (n=52) Mean (SD) Start (n=427) Mean (SD) Total DCS score (18.72) (19.71) (22.50) (20.88) Uncertainty subscore (24.82) (26.41) (27.28) (26.35) Informed subscore (24.64) (27.35) (27.73) (26.95) Values Clarity subscore (25.15) (28.63) (29.74) (26.11) Support subscore (19.80) (23.27) (27.50) (23.66) Effective Decision subscore (19.91) (21.82) (27.02) (21.22) Those who stopped taking a DMD were the most conflicted about their decision, with the highest mean score of 41 on the DCS, followed by those who had never taken a DMD with 39. Those who had changed DMD were the least conflicted about their decision, with a mean score of 23. The highest mean score out of all of the subscales was 47 on the uncertainty subscale by those who stopped taking a DMD. This was followed by a mean score of 45 on the informed subscale by those who had never taken a DMD. 18

19 Frequency The decision to start taking a DMD Starting to take a DMD should essentially involve making two decisions; the decision to take a DMD and the decision regarding which DMD to take. The questionnaire was designed to explore both of these aspects of the decision. 43% (n=427) of people fit into this category and were taking their first DMD. Awareness of DMDs % (n=96) Figure 7 shows the variation in responses received regarding the number of DMDs people who had started taking their first DMD were aware of % (n=19) 6% (n=25) 9% (n=39) 13% (n=56) 18% (n=78) 14% (n=58) 7% (n=31) 6% (n=25) The majority of people were fairly evenly distributed around the minor mode of six DMDs. 58% (n=248) had heard of five or more DMDs and 6% (n=25) had heard of all nine DMDs. The major mode was one DMD: 23% (n=96) of respondents had only heard of the DMD that they were taking and had not heard of any of the other eight DMDs Number of DMDs heard of Figure 7: A breakdown of the number of DMDs people who had started taking their first DMD were aware of 19

20 27% (n=116) 2% (n=10) 70% (n=301) Very/extremely satisfied Slightly/ somewhat satisfied Not at all satisfied Figure 8 shows how satisfied people who started taking their first DMD were with the information they received overall during the process of decision making. 70% (n=301) of respondents were very or extremely satisfied with the information received and 2% (n=10) reported being not at all satisfied. Figure 8: Satisfaction with the information received overall during the DMD decision process for people who started taking a DMD Speaking to healthcare professionals The table below shows when those taking their first DMD last spoke to healthcare professionals. 75% (n=322) of people taking their first DMD had spoken to an MS nurse in the past six months and 59% (n=253) had spoken to a neurologist. Table 5: Most recent interactions with health professionals for people who started taking a DMD GP MS nurse Neurologist In the past 6 months 225 (52.7%) 322 (75.4%) 253 (59.3%) Between 6 months and a year ago 79 (18.5%) 71 (16.6%) 119 (27.9%) Between 1 and 2 years ago 74 (17.3%) 15 (3.5%) 36 (8.4%) More than 2 years ago 28 (6.6%) 15 (3.5%) 19 (4.4%) Never 21 (4.9%) 4 (0.9%) 0 (-) Total 427 (100%) 427 (100%) 427 (100%) 20

21 Reasons to start taking a DMD 93% (n=395) of people who had started taking their first DMD did so in the hope that it would reduce the frequency of their relapses. 84% (n=359) hoped it would result in less disability over the long-term and 84% (n=357) hoped it would reduce the severity of their relapses. The other three reasons are about the choice of DMD selected, which is why the total answered is out of 331 people. The other 96 respondents did not answer the question because they had only heard of the DMD that they were taking, meaning that no other options appeared available to them. Table 6: Reasons for starting to take a DMD Reasons for start and DMD chosen Disagree or strongly disagree Neither agree or disagree Agree or Strongly agree Total answered Hope it would reduce frequency of relapses 19 (4.4%) 13 (3.0%) 395 (92.5%) 427 (100%) Hope it would reduce severity of relapses 36 (8.4%) 34 (8.0%) 357 (83.6%) 427 (100%) Hope it would result in less disability over the long-term Of the options available, preferred the way it was taken Of the options available, preferred how often it was taken Of the options available, the potential side effects were the most acceptable 33 (7.7%) 35 (8.2%) 359 (84.1%) 427 (100%) 52 (15.7%) 65 (19.6%) 214 (64.7%) 331 (100%) 55 (16.6%) 81 (24.5%) 195 (58.9%) 331 (100%) 39 (11.8%) 77 (23.3%) 215 (65.0%) 331 (100%) Reasons to start taking a DMD in further depth Respondents wrote about a variety of different reasons for starting to take DMDs and in some cases for selecting the DMD they were taking. Some people discussed the process of determining which DMD would be the most suitable for them. For example Nathan chose his DMD because he felt it had the least side effects of all the options given to [him] and would help [him] to continue [his] life with minimal impact. Stacy commented that she considered the fact that Auto inject looked easy as she didn t like the idea of actual injections and other auto inject looked complicated! She also described how it was Only once a week injection therefore less injections and less time suffering side effects. 21

22 Jonathan made the selection based on him feeling that it would have the least negative impact on [his] immune system, and Kylie said It was suitable for [her] as it was once a week and [she] had a very young baby at the time. Taking a DMD was seen by Lisa as a way of taking control of MS: I wanted/needed to try something which would allow me to try and take control of my MS instead of just waiting passively to see what happens next. Other people explained that the main reason that they started taking a DMD was due to advice they had received from their neurologists and other specialists. Sarah stated that she mainly started [a particular injectable DMD] because [her] mum wanted [her] to take a DMD suggesting that some individuals felt somewhat pressured to make the decision. In some cases the respondents felt that they were not really involved in the decision making process or not given a choice. Phrases such as That was all that was offered/given were used and John said that he was told that [a particular injectable DMD] was the drug [he] would be given no other options were available to [him]. Chloe stated that she wasn t given a choice, they said everyone had to start on [a particular injectable DMD] and could try other options if [it] didn t suit them. 22

23 Feelings about starting a DMD Table 7 shows 86% (n=365) of people taking their first DMD felt that they chose without pressure from others, however 9% (n=37) disagreed with this. 80% (n=342) felt that the decision reflected what was important to them. The decision to take their first DMD was not an easy decision for 25% (n=108) of respondents to make. Table 7: DCS items for those starting a DMD Disagree or strongly disagree Neither agree or disagree Agree or strongly agree Total answered Uncertainty subscore Clear about the best choice 54 (12.6%) 71 (16.6%) 302 (70.7%) 427 (100%) Sure about what to choose 65 (15.2%) 82 (19.2%) 280 (65.6%) 427 (100%) Decision was easy to make 108 (25.3%) 81 (19.0%) 238 (55.7%) 427 (100%) Informed subscore Knew options available 72 (16.9%) 39 (9.1%) 316 (74.0%) 427 (100%) Knew benefits of each option 83 (19.4%) 51 (11.9%) 293 (68.6%) 427 (100%) Knew risks and side effects of each option 76 (17.8%) 48 (11.2%) 303 (71.0%) 427 (100%) Values Clarity subscore Clear about which benefits matter most 54 (12.6%) 50 (11.7%) 323 (75.6%) 427 (100%) Clear about which risks and side effects matter most 56 (13.1%) 59 (13.8%) 312 (73.1%) 427 (100%) Clear about which is more important (benefits or risks) 54 (12.6%) 51 (11.9%) 322 (75.4%) 427 (100%) Support subscore Chose without pressure from others 37 (8.7%) 25 (5.9%) 365 (85.5%) 427 (100%) Had enough support from others 60 (14.1%) 65 (15.2%) 302 (70.7%) 427 (100%) Had enough advice 55 (12.9%) 54 (12.6%) 318 (74.5%) 427 (100%) Effective Decision subscore Felt made an informed choice 33 (7.7%) 53 (12.4%) 341 (79.9%) 427 (100%) Decision reflects what is important to them 24 (5.6%) 61 (14.3%) 342 (80.1%) 427 (100%) Expect to stick with decision 34 (8.0%) 76 (17.8%) 317 (74.2%) 427 (100%) Satisfied with decision 34 (8.0%) 66 (15.5%) 327 (76.6%) 427 (100%) 23

24 Summarising the decision to start taking a DMD The data suggests that those who started taking a DMD fit into two groups. The first group seemed to be aware of some other available options as 58% had heard of five or more DMDs, whereas the second group were unaware of any other possible options as 23% had only heard of the DMD they were taking. Most people who started taking their first DMD did so in the hope that it would reduce the frequency of their relapses. The majority of people taking their first DMD were very or extremely satisfied with the information received overall. There was much variation in how active responders were in this decision with some people actively deciding to take their first DMD after weighing up the available options. However a small minority of people wrote about being more passive in this decision and felt that they were being told what to do by healthcare professionals. This was also reflected in the support subscale of the DCS, where 9% of people disagreed that they chose without pressure from others. 24

25 Frequency The decision not to take a DMD 327 people who completed the questionnaire had never taken a DMD. Figure 3 showed that 84 people had not heard of any DMDs. This means that 26% (n=84) of people who had never taken DMDs had not heard of any. The decision not to take a DMD encompassed both respondents who never wanted to take a DMD and those who may consider taking them in the future. 25% (n=243) of people fit into this category. Whilst figure 3 showed that 84 people had not heard of any DMDs these were not included in the decision categories of the questionnaire. This was because having no awareness of DMDs means that this group of people were not able to make a decision regarding whether or not to take them. Awareness of options % (n=46) 12% (n=30) 10% (n=23) 14% (n=33) 17% (n=40) 14% (n=35) Figure 9 shows that 46% (n=111) of people who made the decision not to take a DMD had heard of five or more DMDs. 3% (n=8) had heard of all nine DMDs. 19% (n=46) had only heard of one DMD. 20 7% (n=17) % (n=11) 3% (n=8) Number of DMDs heard of Figure 9: A breakdown of the number of DMDs respondents who were not taking a DMD were aware of 25

26 17% (n=16) 43% (n=41) 41% (n=39) Very/extremely satisfied Slightly/ somewhat satisfied Not at all satisfied Figure 10 shows how satisfied people who had never taken a DMD were with the information they received overall during the process of decision making. 41% (n=39) of respondents were very or extremely satisfied with the information received and 17% (n=16) reported being not at all satisfied. Figure 10: Satisfaction with the information received overall during the DMD decision process for those who had never taken a DMD Speaking to healthcare professionals Table 8 shows when those who had never taken a DMD last spoke to healthcare professionals. 53% (n=129) had spoken to an MS nurse in the last six months and 42% (n=101) had spoken to a neurologist in the last six months. 12% (n=28) had never spoken to an MS nurse. 21% (n=52) last spoke to a neurologist more than two years ago. Table 8: Most recent interaction with healthcare professionals for those who had never taken a DMD GP MS nurse Neurologist In the past 6 months 144 (59.3%) 129 (53.1%) 101 (41.6%) Between 6 months and a year ago 34 (14.0%) 35 (14.4%) 53 (21.8%) Between 1 and 2 years ago 31 (12.8%) 28 (11.5%) 37 (15.2%) More than 2 years ago 26 (10.7%) 23 (9.5%) 52 (21.4%) Never 8 (3.3%) 28 (11.5%) 0 (-) Total 243 (100%) 243 (100%) 243 (100%) 26

27 Discussing DMDs with a neurologist Have you and your neurologist ever discussed DMDs? The 243 people who had never taken a DMD were asked had they ever discussed DMDs with their neurologist. Figure 11 presents their responses. 49% (n=119) 16% (n=39) 35% (n=85) No, my neurologist and I have never discussed DMDs Yes, I asked my neurologist about DMDs Yes my neurologist talked to me about DMDs 35% (n=85) of people reported never discussing DMDs with their neurologist. 49% (n=119) of those who had never taken a DMD had a conversation about DMDs facilitated by their neurologist. 16% (n=39) asked their neurologist about DMDs. Figure 11: Discussion with neurologist about DMDs 40 What prompted you to ask your neurologist about DMDs? Figure 12 shows what prompted people to ask their neurologist about DMDs % (n=34) Of those who asked their neurologist about DMDs, 87% (n=34) reported that reading information about DMDs is what prompted them to facilitate the conversation. Only 26% (n=10) felt it was as a result of talking to friends and family and 18% (n=7) due to talking to other health professionals % (n=7) Talking to other health professionals 26% (n=10) Talking to friends and family Reading information about DMDs Figure 12: What prompted the discussion with a neurologist about 27 DMDs

28 Reasons not to take a DMD Table 9 shows that the main reason people had not taken a DMD was because they wanted to manage their MS without drugs. 65% (n=62) of people said this was the case. A further 56% (n=54) of respondents were not taking a DMD because they did not want to experience any of the potential side effects. 31% (n=30) of people were not taking a DMD because they believed that they would not reduce the frequency of their relapses, 30% (n=29) believed that they would not reduce the severity of relapses and 32% (n=31) believed that they would not result in less disability over the longterm. There was a substantial difference between those who were not taking a DMD and those who were taking their first DMD on these three reasons, suggesting different views on the efficacy of DMDs. Table 9: Reasons not to take a DMD Reasons for not start Disagree or strongly disagree Neither agree or disagree Agree or strongly agree Total answered Belief that they would not reduce frequency of relapses 33 (34.4%) 33 (34.4%) 30 (31.3%) 96 (100%) Belief that they would not reduce severity of relapses 34 (35.4%) 33 (34.4%) 29 (30.2%) 96 (100%) Belief that they would not result in less disability over the long-term 29 (30.2%) 36 (37.5%) 31 (32.3%) 96 (100%) Did not like the way they had to be taken 34 (35.4%) 27 (28.1%) 35 (36.5%) 96 (100%) Did not like how often they had to be taken 37 (38.5%) 36 (37.5%) 23 (24.0%) 96 (100%) Did not want to experience any of the potential 22 (22.9%) 20 (20.8%) 54 (56.3%) 96 (100%) side effects Breastfeeding, pregnant or trying to conceive 59 (61.5% ) 10 (10.4%) 9 (9.4%) 96 (100%) Wanted to manage MS without drugs 17 (17.7%) 17 (17.7%) 62 (64.6%) 96 (100%) Reasons not to take a DMD in further depth Respondents wrote about a wide variety of different reasons for not taking a DMD. The beliefs that some people held meant that they had chosen not to take a DMD; including religious beliefs, the belief that no drug should ever be tested on any animal and that MS could be managed through diet and nutrition. 28

29 Many people explained that they were not taking a DMD because they were waiting for further information, MRI results, appointments or treatments. Others were delaying making a decision as they wanted to see how [they] went on for the next year before making a decision or felt that they would prefer to keep them in case [they] do need them in the future. Jane reported not being on DMDs due to financial reasons and stated that she was told that they did not have enough money to cover these in the area that she lives. This contrasts with a clear obligation for the NHS to provide these treatments for those who are eligible. At the time of filling out the questionnaire two DMDs were NICE approved, meaning there was a legal obligation to provide them to those who were eligible. Five other DMDs, available on the Risk Sharing Scheme (RSS), were detailed in the ABN prescribing guidelines which apply to the whole of the UK so NHS bodies also had a legal obligation under the RSS too to provide them to anyone fulfilling the eligibility criteria. Others felt that interactions with health professionals played a part in the decision not to take a DMD. Amanda said that her nurse told [her] the side effects of the drugs are worse than [her] symptoms and Liz described how her neurologist decided that she did not currently need to take them: DMD s have not been offered to me, my neuro wants to wait and see when I next relapse as I ve only ever had one which was quite bad. I am well at the moment and my neuro said why give you DMD s which will cause side effects and make you unwell when you re well at the moment. Henry described his frustration with his neurologist: I have been strongly advised to take a DMD by my neurologist, but he has never explained to me why it would be beneficial at this time (I have not had a relapse in a year, and in the previous year I had one relapse but he did not recognise it as a relapse). I find it very frustrating that I do not get any answers therefore I choose not to take them. The efficacy of DMDs was questioned by both responders and their health professionals. For example Rachel explained that her consultant said that it was now widely believed that they didn t work or effect the long term outcome of your disease progression and Jim said that he was not taking a DMD for many reasons one of which is because my neurologist has been quite negative towards the benefits of DMDs. The efficacy of DMDs was frustrating for some individuals: Given the review of the DMD risk-sharing agreement and the length of time over which apparently ineffective drugs continued to be prescribed, I do not have much confidence in either the efficacy of drugs, or in NICE. I have been told that I was ineligible for 29

30 any newer DMDs until I had tried the existing ones and found them unhelpful partly because of cost and partly because of potentially very serious side effects. I would have been willing to try low dose Naltraxone, but was refused access to it. A concept that was raised by many was the idea of being too well for DMDs. Gavin was currently feeling too well to start but acknowledged the possibility of taking them in the future and Kully said I was told by my neurologist I didn t need them because I was too well. It was also apparent that some people felt that they did not have enough information to make the decision. For example Debbie commented that she was not given sufficient information to enable [her] to make an informed decision. All [she] was told was that DMD s existed but their efficacy was uncertain and others wanted more information about side effects of the drugs. Overall it appears that the level of control that people have had about this decision is highly varied, with people s experiences being very different. Some responders seemed to have actively made the decision not to take a DMD, either full stop or for the time being until their MS progresses, whereas others seemed to have been more passive in this decision being told not to take a DMD. 30

31 Feelings about not taking DMDs Table 10 indicates that 71% (n=68) of people were satisfied with the decision not to take DMDs and 70% (n=67) felt that the decision reflected what was important to them. 28% (n=27) did not feel that they knew the options available to them, 34% (n=33) believed that they did not know the benefits of each option and 32% (n=31) believed that they did not know the risks and side effects of each option. Table 10: DCS items for those not taking DMDs Disagree or strongly disagree Neither agree or disagree Agree or strongly agree Total answered Uncertainty subscore Clear about the best choice 17 (17.7%) 21 (21.9%) 58 (60.4%) 96 (100%) Sure about what to choose 24 (25.0%) 23 (24.0%) 49 (51.0%) 96 (100%) Decision was easy to make 36 (37.5%) 21 (21.9%) 39 (40.6%) 96 (100%) Informed subscore Knew options available 27 (28.1%) 16 (16.7%) 53 (55.2%) 96 (100%) Knew benefits of each option 33 (34.4%) 17 (17.7%) 46 (47.9%) 96 (100%) Knew risks and side effects of each option 31 (32.3%) 14 (14.6%) 51 (53.1%) 96 (100%) Values Clarity subscore Clear about which benefits matter most 29 (30.2%) 23 (24.0%) 44 (45.8%) 96 (100%) Clear about which risks and side effects matter most 26 (27.1%) 22 (22.9%) 48 (50.0%) 96 (100%) Clear about which is more important (benefits or risks) 26 (27.1%) 18 (18.8%) 52 (54.2%) 96 (100%) Support subscore Chose without pressure from others 8 (8.3%) 23 (24.0%) 65 (67.7%) 96 (100%) Had enough support from others 17 (17.7%) 33 (34.4%) 46 (47.9%) 96 (100%) Had enough advice 22 (22.9%) 21 (21.9%) 53 (55.2%) 96 (100%) Effective Decision subscore Felt made an informed choice 16 (16.7%) 25 (26.0%) 55 (57.3%) 96 (100%) Decision reflects what is important to them 5 (5.2%) 24 (25.0%) 67 (69.8%) 96 (100%) Expect to stick with decision 12 (12.5%) 30 (31.3%) 54 (56.3%) 96 (100%) Satisfied with decision 11 (11.5%) 17 (17.7%) 68 (70.8%) 96 (100%) 31

32 Summarising the decision not to take a DMD When comparing them to the other three decision groups, those who had never taken a DMD: Scored worst on the informed subscale, suggesting that they felt least informed at the time of decision making. Were the least likely to have heard of five or more DMDs, which is reflected in the fact that they had the highest percentage of disagreement with the statement regarding awareness of available options. Less than half of the respondents who had never taken a DMD had a conversation about DMDs facilitated by their neurologist. Scored second worst on the support subscale (after those who had stopped taking DMDs) suggesting they felt unsupported in decision making. Scored second worst on the effective decision subscale suggesting that they were unsure about how good the decision was. The main reason people had not taken a DMD was because they wanted to manage their MS without drugs; however many other factors were raised. Experiences appeared to be highly varied, with some people actively making the decision not to take a DMD and others being more passive in the decision making process. The efficacy of DMDs was questioned by many in this group and was evident in both the quantitative and qualitative data. Some people s beliefs were not consistent with the clinical trial evidence as 31% of people believed that DMDs would not reduce the frequency of their relapses. This suggests scepticism from the respondents and possibly from healthcare professionals, which is supported by some of the comments received. 32

33 Frequency The decision to change DMD Changing DMD essentially involved making two decisions; the decision to stop taking one DMD and the decision to start taking another DMD. The reasons for change captured both of these aspects. 23% (n=223) of people fit into this category. Awareness of options % (n=8) 5% (n=12) 11% (n=25) 14% (n=30) 27% (n=61) 18% (n=41) 13% (n=29) 8% (n=17) Number of DMDs heard of Figure 13: A breakdown of the number of DMDs those who had changed DMDs had heard of Figure 13 shows that 80% (n=178) of people who had changed DMDs had heard of five or more DMDs and 8% (n=17) had heard of all nine DMDs. This indicates that those who had changed DMD were more aware of DMDs than those taking their first DMD or those who had never taken one. Also only 4% (n=8) had heard of two DMDs, the one that they were taking when filling out the questionnaire and the one they had taken previously. This is much lower than the 23% (n=96) of people who were only aware of the DMD that they were taking. This suggests that those who changed DMD were more aware of the available options than those starting to take DMDs. 33

34 23% (n=51) 2% (n=5) 75% (n=167) Very/extremely satisfied Slightly/ somewhat satisfied Not at all satisfied Figure 14 shows how satisfied people who changed DMDs were with the information they received overall during the process of decision making. 75% (n=167) of respondents were very or extremely satisfied with the information received and 2% (n=5) reported being not at all satisfied. Figure 14: Satisfaction with the information received overall during the DMD decision process for those who changed DMDs Speaking to healthcare professionals 84% (n=187) of people who had changed DMDs had spoken to an MS nurse in the past six months and 70% (n=156) had spoken to a neurologist in the past six months. All respondents who changed DMDs had seen an MS nurse and for 99% (n=221) of people this was in the past two years. Table 11: Most recent interaction with health professionals for those who changed DMDs GP MS nurse Neurologist In the past 6 months 140 (62.8%) 187 (83.9%) 156 (70.0%) Between 6 months and a year ago 38 (17.0%) 30 (13.5%) 48 (21.5%) Between 1 and 2 years ago 23 (10.3%) 4 (1.8%) 12 (5.4%) More than 2 years ago 19 (8.5%) 2 (0.9%) 7 (3.1%) Never 3 (1.3%) 0 (-) 0 (-) Total 223 (100%) 223 (100%) 223 (100%) 34

35 Reasons for changing DMD The table below indicates that the main reason people changed DMD was because of the side effects that they were experiencing, with 63% (n=140) of people agreeing or strongly agreeing with this statement. 59% (n=132) of people agreed or strongly agreed that they changed to a different DMD as they hoped it would reduce the frequency of their relapses, 54% (n=121) hoped it would reduce the severity of their relapses and 56% (n=125) hoped it would result in less disability over the long-term. Table 12: Reasons for change Disagree or strongly disagree Neither agree or disagree Agree or strongly agree Total answered Hope it would reduce frequency of relapses 65 (29.1%) 26 (11.7%) 132 (59.2%) 223 (100%) Hope it would reduce severity of relapses 68 (30.5%) 34 (15.2%) 121 (54.3%) 223 (100%) Hope it would result in less disability over the long-term 62 (27.8%) 36 (16.1%) 125 (56.1%) 223 (100%) Preferred the way it was taken 87 (39.0%) 41 (18.4%) 95 (42.6%) 223 (100%) Preferred how often it was taken 92 (41.3%) 52 (23.3%) 79 (35.4%) 223 (100%) Side effects I was experiencing 63 (28.3%) 20 (9.0%) 140 (62.8%) 223 (100%) Concerned about potential side effects 133 (59.6%) 50 (22.4%) 40 (17.9%) 223 (100%) A specific medical issue meant that it was no longer suitable for me 115 (51.6%) 42 (18.8%) 66 (29.6%) 223 (100%) Reasons for changing DMD in further depth As the main reason people changed DMD was due to the side effects they were experiencing, many respondents wrote about this in greater depth. Some discussed the severity of skin reactions at injection sites, fatigue, depression or suicidality. Others explained that they changed due to the increased risk of PML after being on Tysabri for an extended period of time. 35

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