Table 2 Rheumatoid Arthritis Distress Scale (RADS) items and response options

1. I find it difficult to accept having RA

2. I feel that having RA has a big impact on me

3. I feel worried that having RA has a big impact on my family or friends

4. I feel worried that I might have to depend on family or friends in the future

5. I find it difficult to accept the impact my RA might have on my ability to work

6. I am concerned that my disease might not be well controlled

7. I worry about the long-term impact of my disease

8. I worry about having other long-term conditions in addition to my RA

9. I am worried about the impact of developing infections due to my low immunity

10. I am concerned that medication will not stop the disease progression (including joint damage)

11. I feel frustrated that there is no cure for RA

12. I feel distressed because of my RA pain

13. I feel frustrated because my RA symptoms limit my mobility

14. I feel irritated because my RA symptoms disrupt my sleep

15. I feel frustrated because of my fatigue associated with my disease

16. I feel frustrated because sleep does not relieve the fatigue I feel with my disease

17. I feel frustrated that my RA stops me doing what I want to do

18. I feel my energy is drained living with RA

19. I feel frustrated that I cannot do everything I used to be able to do/enjoy

20. I feel frustrated that I cannot do everything I would like to be able to do

21. I feel frustrated that I cannot be as physically active as other people my age

22. I feel distressed trying to manage my weight with having RA

23. I find it frustrating that people do not understand RA

24. I am concerned my RA will have an impact on my ability to look after others

25. I am frustrated that I do not have enough support to enable me to do a/my job

26. I feel a loss of purpose because I cannot work/work to the extent I used to due to my RA

27. I worry that having RA may affect my finances

28. I feel deflated about different RA treatments not working effectively for me

29. I am frustrated about the side effects of my treatment

30. I feel distressed with the regimen of collecting and managing my medication

31. I feel frustrated with the difficulty in accessing help from healthcare professionals e.g. accessing nurse help line

32. I am frustrated when clinic appointments are cancelled or rescheduled at short notice

33. I feel frustrated at the lack of continuity of my care e.g. seeing several different consultants

34. I worry that attending so many appointments for my RA impacts on my other commitments

35.I feel frustrated when healthcare professionals do not take enough time to assess my condition

36. I feel frustrated when healthcare professionals do not adequately explain test results or treatments to me

37. I feel frustrated that healthcare professionals do not ask how I am coping living with RA

38. I feel frustrated that I am not adequately supported or listened to by healthcare professionals

39. I feel overwhelmed living with RA