When first diagnosed with multiple sclerosis (MS), people may feel overwhelmed with information, or too shocked by the diagnosis to fully engage with decisions about treatment. New research found that decision aids may help them to understand their condition and make decisions that are right for them.
Treatments for people with MS can improve long-term outcomes, but may have side-effects and be inconvenient to receive. Deciding on the first treatment after being diagnosed with MS can be especially difficult.
Clinicians and patients make decisions on treatment together. But clinicians tend to consider only the risks and benefits of treatments. Patients are also interested in how easily the treatment fits with their personal circumstances. They make trade-offs and may choose a treatment which is slightly less effective if it is more convenient to receive. This mismatch in thinking may mean clinicians emphasise aspects of treatment that are less important to patients.
A long list of treatment options – which are not all appropriate for an individual patient – is unhelpful. New research, based on interviews with patients, informed the design of a new patient decision aid. It aims to help people to understand their condition and to make decisions that are right for them.
The trade-offs made by patients may change over time as their life-goals change. This will alter the decisions they make about treatment. Decision aids can help them make choices about their first - and subsequent - treatment for MS. Once the initial shock of diagnosis has passed, they need accurate and accessible information, presented in a way that allows them to think through what is important to them and why.
What’s the issue?
More than 130,000 people in the UK have MS. Recent advances in diagnostic imaging and treatment mean people may now be diagnosed earlier in the course of the disease. This gives them more treatment options but some of the risks and benefits of these new treatments are not yet well-known.
Patients want to make shared decisions about their treatment with their clinicians. They therefore need good quality information, presented in a manner that is helpful and relevant to them. Patient groups have requested decision aids for MS treatments.
Most people with MS have a type called relapsing remitting. It means that people alternate between getting symptoms (a relapse), followed by a period of no symptoms (remission). The disease may worsen with each relapse.
This study was intended to help develop a patient decision aid for people with relapsing remitting MS who are offered treatments to slow the progression of disease. These Disease-Modifying Treatments (DMT) can improve long-term outcomes but also have side-effects, including the chance of getting another long-term health problem.
Researchers interviewed 30 people who had experience of making decisions about their first treatment for relapsing remitting MS. They identified themes which influenced the patients’ experience.
The immediate emotional reaction to the MS diagnosis often included shock and distress. Some people reported feeling unable to take in information, or to make decisions. Others were left waiting for weeks or months, with little information about what the diagnosis meant or how it would affect them.
The experience differed according to the disease. People experiencing worsening symptoms (active MS) reported being immediately presented with a long list of treatments to consider, which they found overwhelming. Others felt their clinician offered little choice except for the treatment he or she favoured. Or they found that their medical history meant most treatments were unsuitable for them and they were left with few choices.
Some people with few symptoms which were not getting worse (non-active MS) said they went for years without discussing treatment. Some did not report increased symptoms because they were unsure of their significance, so may have missed out on appropriate treatment.
Patients were interested in clinical effectiveness. But they were more likely to consider how treatment would be delivered, for example, whether they could self-inject at home, or would have to go to hospital for infusion. People made choices based on whether they could take time away from work or childcare to have treatment.
Why is this important?
NICE guidelines state that people with MS should be offered oral and written information at the time of diagnosis. They do not specify that a decision aid should be used.
These findings suggest that a patient decision aid would be a useful addition to care for people newly diagnosed with MS. The aid needs to be appropriate to an individual’s situation. Decisions for people considering their first treatment, for example, are different from decisions taken later when treatments need to change.
The study suggests that many patients feel they have insufficient information about the condition when first diagnosed. They need time and good communication with clinicians to understand the implications, before moving on to treatment decisions.
Clinicians may find it useful to know that patients may be more concerned about practical aspects of treatment, rather than small differences between drugs in efficacy or the risk of side effects.
This qualitative study was part of a two-year study to understand how and why people with relapsing remitting MS choose to start treatment with DMT, and to develop an evidence-based patient-centred decision aid. The print booklet version of the decision aid is now available for download and is being tested. The online version is due to go live in October 2020.
The decision aid is available to clinicians working with MS patients, to help patients understand the choices they face and guide them through the options.
You may be interested to read
The full paper: Manzano A, and others. Impact of communication on first treatment decisions in people with relapsing-remitting multiple sclerosis. Patient Education and Counselling. 2020;S0738-3991(20)30280-9
The Crimson project website, which ran this study and produced the decision aid
Funding: This work was supported by NIHR infrastructure at Leeds. Individual authors received support from the NIHR’s Efficacy and Mechanism Evaluation Programme and the NIHR Health Technology Assessment Programme (NIHR).
Conflicts of Interest: Individual authors have received fees and honoraria from various pharmaceutical companies.
Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.