OBJECTIVES:
To explore the frequency of non-starters and stoppers of
disease-modifying therapy (DMT) in a cohort of people recently diagnosed
with multiple sclerosis (MS) and to identify reasons for non-starting
or stopping DMT measured by demographic variables, social support [The
Interpersonal Support Evaluation List (ISEL)] and disease-related stress
[The Impact of Event Scale (IES)].
MATERIALS
AND METHODS: A multicentre retrospective cohort study using postal
surveys completed by people with MS was performed, comprising all
patients diagnosed with MS during 2000-2007 at four university clinics
in Norway.
RESULTS:
Of the 424 respondents, 180 (42%) were still using the first prescribed
DMT, 83 (20%) were using DMT after switching DMT at least once, 53
(12.5%) had ended DMT, and 108 (25.5%) had never started DMT. The risk
of non-starting DMT was associated with increasing age at diagnosis, the
region, disease-related stress and avoidant trauma coping. The risk factors for stopping therapy after the first prescribed DMT were adverse events and high education.
CONCLUSIONS:
Disease-related stress, avoidant trauma coping, age at diagnosis and
education should be considered when motivating people with MS to use
DMT. Hence, the challenges to starting and continuing treatment will
probably also remain a problem with orally administered DMT
This
study looks at MSers and tries to assess factors that influence whether
you will either start or continue to take your DMT. Factors influencing
whether you start are age, the older MSer was more reluctant to do
something and also area where you live influences this, so the "post-code lottery" is
active in other countries besides the UK and how you deal with the stress
of having MS. The reasons for stopping DMT were adverse events and high
education, which I guess boils down to the realisation that the drug is
not working for you.