Decisions, decisions…about MS therapies
A new study has looked at the decision-making process when it comes to MS treatments and found that inner conflict and regret are common – no matter what the decision (Wilkie and colleagues. Mult Scler J Exp Transl Clin 2019;5:2055217319833006).
The study involved three groups of people along the decision curve: people with MS attending an MS education day; people who had been offered treatment at an MS clinic and who were reviewing their options as part of the aptly-named Decisions Of Uncertainty Broaching Treatment in MS (MSDOUBT) study; and people enrolled in a study who were already on a disease-modifying therapy (DMT) for their MS. DMTs include injectable drugs (Copaxone, interferons), oral drugs (Aubagio, Tecfidera, Gilenya, Mavenclad) and infusion drugs (Tysabri, Ocrevus, Lemtrada).
The decision-making process is complex when it comes to MS therapies. Should I treat my MS early when my symptoms are milder, delay the decision to when my symptoms are more severe, or adopt a healthier lifestyle and forget about treatment? If you do opt for medication, which of the many choices (each with its pros and cons) will be the best one for your circumstances? And once you are on treatment, is it doing the job, can you handle the side effects, or would some other drug be better? When it comes to MS, the best course of action isn’t known so there is plenty of room for feeling conflicts and regrets.
A total of 254 people with MS participated. For the purposes of the study, the researchers focused on two aspects of the decision-making process. The first was “decisional conflict”, such as feeling unsure about whether or not to start therapy or which of the treatments would be the best option. Secondly, they looked at “decisional regret” – regretting the course of action you took. Some might feel regret about not starting treatment, others might have regrets about starting. So they were asked questions about whether their decision was the right one and whether they’d make the same decision again.
Overall, a majority (53%) of people had decisional conflict. Inner conflict decreased from 75% of people who were not on treatment, to 53% of people who had been offered treatment but had not come to a decision, to 45% of people who had made a decision and were currently on a treatment. This suggests that feeling conflicted is part of the process but it may start to diminish once a decision has been made.
The results for “decisional regret” were somewhat different. Fewer people on treatment (who had come to their decision) had regrets compared to those who were offered treatment (and hadn’t decided yet) or those attending the MS education day (who were still learning about their options).
People were more likely to feel conflicted if they were early on in the decision-making process, were employed (which complicates how you weigh the pros and cons), or on a less potent DMT. Regret was more common among those who were dissatisfied with their treatment decision (either to treat or not), and those who had opted for a less potent medication.
How the decision was made was also important. People were more likely to feel conflict and regret if they relied more heavily on the doctor’s decision and felt they hadn’t actively participated in the decision-making process. This may mean that they felt less in control of the process, or that people take responsibility for and defend the decisions they’ve made.
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