Table 4.
Maintaining control | Patients wanted full information about DMARDs so that they could make their own choice. Some were prepared to accept complications and would take extreme risks. |
Distressing uncertainties & consequences | Some were worried about the safety of DMARDs and were uncertain about their efficacy: ‘My orthopaedist said: “arthritis patients actually have two diseases, that is arthritis and methotrexate”; I have always remembered that.’ |
Negotiating treatment expectations | Emotional responses to DMARDs hinged on impact, or expected impact of medication. For some Biologic DMARDs were seen as the last hope. Some were disappointed with the effects; for others, the effects exceeded hopes. |
Powerful social influences | Family, friends, doctors and nurses could have a strong influence on the decision to take DMARDS. Patients needed to have confidence in the doctor, yet experience of healthcare was variable. |
Privilege and right of access to biologics | Some felt it was a privilege to take biologic DMARDS and could feel guilty. Others felt that everyone with RA had a right to be prescribed. Some were very worried about DMARDs being withdrawn and hid any side effects. |
Intensifying disease identity | Some were shocked about being prescribed ‘strong’ medications and felt this was a sign of increasing disease severity. Some felt dependent on lifelong medication which made them contemplate the incurability of RA. |
This table summarise the findings from Kelly and colleagues ‘Patients’ attitudes and experiences of disease-modifying anti-rheumatic drugs in rheumatoid arthritis and spondyloarthritis: A qualitative synthesis’ [66]