This study aimed to investigate the perspectives and experiences concerning the choice of disease modifying drug (DMD) treatment, starting and then continuing with treatment in a group of people with MS and MS neurologists in the Netherlands. Both groups completed online questionnaires.
The study found that most neurologists were keen for people with MS to choose their own DMD after discussions about treatment and for them to start treatment within a year of diagnosis, ideally within six months.
The people with MS that were questioned did had not been as involved in choosing their treatment as the neurologists answers suggested they might be, possibly as some of the group were seeing neurologists who were not MS specialists.
Both groups recognised and highlighted that many people with MS took breaks from treatment, often because of side effects, problems taking the drugs or not getting what they expected from the drugs.
The authors suggest that more and better information is needed to help facilitate good discussions about treatment options and what to expect from treatment.
Starting a disease modifying drug and then taking it as required and not taking a break, requires someone to consider a lot of information when making the initial decision, including knowing what to expect from treatment. Communication between the person with MS and their health professionals is very important, as it should be a shared decision, taking in account the preferences of the person with MS as well as managing their expectations of what can be achieved through treatment.
This study aimed to investigate the perspectives and experiences concerning the choice of DMD treatment, starting and then continuing with treatment in a group of people with MS and MS neurologists in the Netherlands. This information was examined to see if the two groups had similar or differing opinions, as this could help improve information about the available treatment options.
How this study was carried out
107 People with MS and 18 MS specialist neurologists in the Netherlands took part in this study. The neurologists were not necessarily the neurologists who treated the people with MS as some of these saw non MS specialist neurologists.
The people with MS were all currently using one of the injected disease modifying drugs (one of the beta interferons or Copaxone) as the study started in July 2014 and the oral DMDs such as Tecfidera did not start to become available in the Netherlands until October 2014.
Each participant completed an online questionnaire. This collected information and opinions on areas such as: the type of treatment, starting treatment, factors involved in the choice of treatment, treatment goals, sources of information used and needed, side effects and adherence to treatment.
What was found
The questionnaires found that on several topics the people with MS and the neurologists agreed and on others they had differing opinions.
- Most of the neurologists (83%) believed the person with MS should be able to select their own treatment after discussions with their health professionals.
- Around a half (59%) of the people with MS on treatment said they had been responsible for selecting their own treatment, others (27%) had a treatment recommended by their health professionals following discussions and the rest (14%) had no discussions and were told which treatment they would be taking.
- For the people with MS the most important factors to consider when choosing a treatment were how effective the treatment was at reducing relapses followed by how effective it was at reducing disease progression.
- Most neurologists (78%) would start treatment within six months as diagnosis and the rest would within 12 months, as there is evidence that starting treatment earlier is more beneficial.
- Almost a quarter of the people (24%) with MS said they had not started within the first 12 months of being diagnosed.
Taking a break or stopping treatment
- When asked how many of the people with MS they had treated had taken a break from treatment the estimates ranged from 5% to 80%.
- When the people with MS were questioned just under a quarter (23%) said they had taken a break.
- The reasons why people took a break or stopped treatment included side effects, not feeling the drug was working for them, as well as practical issues and difficulties in taking the treatment.
Sources of information
- Both the people with MS and the neurologists agreed that they needed more information and materials to facilitate their discussions about treatment options.
- People with MS said they got most of their information about their treatment options from their neurologist (73%) or their MS nurse (63%). Over half also used online sources of information.
What does it mean?
This study shows that people with MS and MS neurologists can have different opinions and experiences when it comes to the DMDs, information about them and sticking with treatment. However both groups agreed that having more information would be helpful to facilitate good discussions about treatment options and what to expect from treatment.
The authors conclude that there is a need for up to date information on MS treatments for both neurologists and people with MS. They suggest accurate websites, printed information, choice models and independent summaries of the research into the DMDs would be very useful and could help improve communication and the involvement of the person with MS in treatment decisions.
Visser LH, Heerings MA, Jongen PJ, van der Hiele K.
Perspectives and experiences of Dutch multiple sclerosis patients and multiple sclerosis-specialized neurologists on injectable disease-modifying treatment.
Patient Prefer Adherence. 2016 Apr 26;10:659-67. doi: 10.2147/PPA.S106155. eCollection 2016.
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More about disease modifying drugs
Disease modifying drugs (DMDs) work with different parts of the immune system to prevent the inflammation caused by MS. This helps reduce the number and severity of relapses. Inflammation in MS can also lead to permanent damage to the nerves in the brain and spinal cord. Reducing this inflammation may help to reduce the build-up of disability over time.
Although this study examined the experience and perspectives of people and neurologists in the Netherlands, many of the issues highlighted are the same for people with MS and their health professionals in the UK and elsewhere. This is why the MS Trust developed MS Decisions, which is an independent source of reliable, evidence-based information for anyone wanting to know more about the disease modifying drugs for relapsing remitting MS. The MS Decisions webpages can help you explore your options and help you discuss starting or switching between one of the drugs with your MS team.
In the UK, there are now 11 DMDs that have been approved for use in the NHS for people with relapsing MS. Each drug offers a different combination of benefits and risks. Choosing which DMD to try is a complex decision and although the neurologist and MS specialist nurse can advise on eligibility and suitability for treatments, often people with MS are faced with a choice between two or more drugs.
You can learn more about the disease modifying drugs in MS Decisions, our independent online guide to the DMDs or in our book Disease modifying drugs a guide to treatments for relapsing MS which can be read online, downloaded as a pdf or ordered as a printed version.
Research by topic areas...
Buttmann M, Seuffert L, Mäder U, et al.
Malignancies after mitoxantrone for multiple sclerosis: a retrospective cohort study.
Neurology. 2016 May 11. [Epub ahead of print]
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Becker H, Stuifbergen AK, Schnyer RN, et al.
Integrating acupuncture within a wellness intervention for women with multiple sclerosis: a feasibility study.
J Holist Nurs. 2016 May 9. [Epub ahead of print]
Patti F, Messina S, Solaro C, et al.
Efficacy and safety of cannabinoid oromucosal spray for multiple sclerosis spasticity.
J Neurol Neurosurg Psychiatry. 2016 May 9. [Epub ahead of print]
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Haupts M, Vila C, Jonas A, et al.
Influence of previous failed antispasticity therapy on the efficacy and tolerability of THC:CBD oromucosal spray for multiple sclerosis spasticity.
Eur Neurol. 2016 May 10;75(5-6):236-243. [Epub ahead of print]
Kempen JC, Doorenbosch CA, Knol DL, et al.
Newly identified gait patterns in patient with multiple sclerosis may be related to push-off quality.
Phys Ther. 2016 May 12. [Epub ahead of print]
Hameau S, Zory R, Latrille C, et al.
Relationship between neuromuscular and perceived fatigue and locomotor performance in patients with multiple sclerosis.
Eur J Phys Rehabil Med. 2016 May 10. [Epub ahead of print]
Pregnancy and childbirth
Brandt-Wouters E, Gerlach OH, Hupperts RM.
The effect of postpartum intravenous immunoglobulins on the relapse rate among patients with multiple sclerosis.
Int J Gynaecol Obstet. 2016 Apr 18. [Epub ahead of print]
Sumowski JF, Rocca MA, Leavitt VM, et al.
Brain reserve against physical disability progression over 5 years in multiple sclerosis.
Neurology. 2016 Apr 27. [Epub ahead of print]
Poorolajal J, Bahrami M, Karami M, et al.
Effect of smoking on multiple sclerosis: a meta-analysis.
J Public Health (Oxf). 2016 May 8. [Epub ahead of print]
Brenner P, Mittendorfer-Rutz E, Jokinen J, et al.
Prescribed psychiatric medication among multiple sclerosis patients before and after disability pension: a register study with matched controls.
Soc Psychiatry Psychiatr Epidemiol. 2016 May 11. [Epub ahead of print]
Papathanasopoulos P, Preka-Papadema P, Gkotsinas A, et al.
The possible effects of the solar and geomagnetic activity on multiple sclerosis.
Clin Neurol Neurosurg. 2016 Apr 27;146:82-89. [Epub ahead of print]
Symptoms and symptom management
Hughes AJ, Turner AP, Alschuler KN, et al.
Association between sleep problems and perceived cognitive dysfunction over 12 months in individuals with multiple sclerosis.
Behav Sleep Med. 2016 May 11:1-13. [Epub ahead of print]
Braley TJ, Kratz AL, Kaplish N, et al.
Sleep and cognitive function in multiple sclerosis.
Sleep. 2016 May 3. [Epub ahead of print]
Aghaei N, Karbandi S, Gorji MA, et al.
Social support in relation to fatigue symptoms among patients with multiple sclerosis.
Indian J Palliat Care. 2016 Apr-Jun;22(2):163-7.
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