Treatment Satisfaction and Decision-making from the Patient Perspective in Axial Spondyloarthritis: Real-World Data from a Descriptive Cross-sectional Survey Study from the ArthritisPower Registry

Abstract

Objective: Aims were to 1) to characterize patient decision-making with treatment for axial spondyloarthritis (axSpA) and 2) to explore relationships among decision-making, treatment satisfaction, and biologic disease modifying antirheumatic drugs (bDMARDs).

Methods: ArthritisPower participants with physician-diagnosed axSpA were invited to complete an online survey about their treatment and their most recent physician visit. Analysis compared treatment decision by satisfaction and bDMARD status.

Results: Among the 274 participants, 87.2% were female, and the mean age was 50 years. Of participants, 79.5% had researched treatment before their most recent physician visit, and 56.9% discussed treatment change at their most recent physician visit. Of treatment-change discussions, 69.2% of them were related to escalation, compared with deescalation (27.6%) and/or switching (39.1%). Among those participants who discussed a change, 73.7% agreed to it because they felt that their disease was not being controlled (54.9%) or felt that it could be better controlled on new treatment (20.3%). Top symptoms prompting change were back/buttock pain (63.3%), other joint pain (55.1%), and fatigue (54.1%). Among bDMARD-treated participants (n = 128), important factors for treatment decisions were prevention of long-term axSpA consequences (92.9%) and doctor's advice (87.5%). Among 43.4% of participants reporting treatment dissatisfaction, 37% did not discuss treatment change. Current bDMARD use was more common in satisfied (61.9%) than dissatisfied participants (26.9%).

Conclusion: In this cross-sectional study of a predominantly female axSpA population, patients frequently researched treatment options and discussed escalation with their providers. Under two-thirds of participants who were dissatisfied with treatment discussed changes at their most recent visit. Current bDMARD use was associated with higher satisfaction, and bDMARD users considered prevention of long-term consequences and doctor's advice to be very important for decision-making.

Figure 1

Participant flow diagram.

Figure 2

Top symptoms^‡ prompting axSpA treatment change among those who made a change at most recent visit (n = 98^†). ^†Participants who made a treatment change and a reason they reported for it was that their disease was not being controlled by the treatment that they were previously on or that their disease was being controlled but they thought it could be better controlled by a change in treatment. ^ǂ Participants could select more than one symptom.

Figure 3

Factors considered very important to axSpA patients on a bDMARD when making decisions about their treatment (N = 128^‡) (full list of factors in Supplemental Table 4). ^ǂ Participants could select more than one reason. Responses selected by <40% of participants: Intuition or gut response when I ask myself if this is the right thing to do (35.2%), How easy the treatment is to use or do (such as taking a pill versus doing yoga) (32.0%), Concern that the treatment will only work for a short time and I should save the treatment option for a later date when I feel worse (26.6%), How often I have to take the treatment (daily versus weekly versus monthly) (23.4%), How often I will need to get imaging tests (X ray, ultrasound) on this medication (21.1%), How often I will need to get lab tests on this medication (19.5%), Avoiding needles or injections (14.1%), Whether people will judge me for my pain management strategy (8.6%), Personal recommendations from family or friends (6.3%), Whether the treatment is a natural remedy (4.7%), Advertisements (0.8%).