Table 5 Focus group questions

1. What do you call your arthritis and why?

2. How did spondylitis start for you? What were your earliest symptoms?

3. Before you were diagnosed, what kinds of things did you say to your doctor about it?

4. Sometimes people with spondylitis wait a long time before finally being diagnosed. Sometimes 7 or 10 years. What was your experience? What was the diagnostic journey like?

5. Written exercise: What do these terms mean to you? (chronic, stiffness, flare-up, acute) -- Discussion: How about these other terms: Psoriasis; Iritis; NSAID, uveitis, etc.

6. Who has experienced “stiffness”? How would you describe it to someone who has never had it?

7. How do you talk about pain to your doctor? When a doctor asks you how long you have had pain – what does that mean to you?

8. Written Exercise: Look at the handout called “Your Arthritis – Side A.” Use the figure her and mark the spot of the first pain, aching or stiffness. Anyone want to comment?

 Now side B. Mark your pain, aching or stiffness that affected your life the most. Comments?

9. What advice do you have for primary care doctors, family doctors etc.? Rheumatologists?

10. If you could go back in time, how would you discuss your symptoms to help reach a diagnosis more quickly? Would you have done anything differently?