Disease Modifying Therapy & the Decision Making Process for MS patients in NARCOMS

Background: Reasons for choosing/changing multiple sclerosis (MS) disease modifying therapies (DMTs) may involve disease changes, financial considerations or other factors. These decisions may be made by the patient, doctor or both. With new DMTs emerging, switching DMTs will become more complex and it is important to understand who makes the decision, how and why.

Objectives: Describe the DMT status and changes to DMTs (e.g. switch, discontinuation) in NARCOMS participants and how the decision is made by the patient and doctor. 

Methods: In Fall 2014, participants provided DMT status (Yes/No), changes to DMT use (Yes/No) and control preference, defined as "the degree of control an individual wants to assume when decisions are being made about medical treatment". The Control Preference Scale (CPS) consists of 5 images that show different patient/doctor roles in treatment decision-making ranging from the individual making the decisions, the individual making the decisions jointly with the doctor, to the doctor making the decisions. Results are reported for online responders (analysis for paper forms is ongoing).

Results: Of 5108 online responders, 4907 (96.1%) had complete CPS and demographics. The mean(SD) age was 57.0(9.6) years, 60.3% (2957) had RRMS, 78.1% were female and 69.3% reported DMT use in prior 6 months. Of RRMS, 24.9% (n=544) reported a DMT change during that period which was similar for other types of MS (p=0.09). For CP (median age for response): 42.6% (median age 58.4) share responsibility with the doctor in treatment decisions, 41.7% (56.3) make the final decision after considering the doctor’s opinion, 8.5% (57.9) make the final decision alone, 6.2% (59.5) prefer that the doctor make the decision considering their opinion, and 1.1% (63.1) leave all decisions to the doctor. CP did not differ by gender (p=0.09) or relapse in the last 6 months (p=0.86) but older participants were more likely to leave all decisions to the doctor (all p<0.01). When adjusted for age (p<0.0001) and type of MS (p=0.028), those currently on DMT were more likely to share the decision with the doctor than those who were not on a DMT (47.4 vs 31.6%, p<0.0001).

Conclusions: Most responders shared treatment decisions with their doctor or considered their doctor’s opinion before making a decision. Younger responders, those currently on DMT or those with RRMS reported more frequent shared decision-making than older responders, those not on DMT or with other types of MS.