Table 2.

Phase 2 patient survey questions

1. What is your sex? Male, female

2. What is your age in years?

3. In what country do you live?

4. What was the cause of your Cushing syndrome? Pituitary, adrenal, other, unknown, other

5. Have you had surgery to treat your Cushing syndrome? Yes, no

6. How many surgeries have you had to treat your Cushing syndrome?

7. What was the date of your most recent surgery for treatment of your Cushing syndrome?

8. Check one option below that describes your surgery. Pituitary, adrenal, other

9. When you were discharged from the hospital after surgery, which cortisol replacement medication did you take? Hydrocortisone, prednisone, dexamethasone, prednisolone, none, unknown, other

10. What was the cortisol replacement medication dose that you were discharged on from the hospital after surgery?

11. Are you currently taking any type of cortisol replacement medication? Yes, no

12. If yes, what medication are you taking now? Hydrocortisone, prednisone, dexamethasone, prednisolone, none, unknown, other

13. What is the total daily dose?

14. If no, what medication was the last cortisol replacement medication you took after surgery? Hydrocortisone, prednisone, dexamethasone, prednisolone, none, unknown, other

15. How long after your surgery did you stop taking cortisol replacement medication? Please answer in months.

16. How did you take your cortisol replacement medication over time? None, constant, decreased, unknown

17. If you selected “decreased” for question 16, please select the option that best describe your tapering process. Begin rapid, begin slow, end rapid, end slow, equal, unknown

18. Who initiated the decision to stop or reduce your cortisol replacement medication? Doctor, myself, both, unknown

19. Which tests if any were performed after you were discharged from the hospital? ACTH blood test, cortisol blood test, ACTH stimulation test, ITT, cortisol urine test, dexamethasone suppression test, no tests, unknown

20. Except for sick days, did you ever increase your dose of cortisol replacement therapy? Yes, no, unknown

21. Were you ever changed to a different cortisol replacement medication? Yes, no, unknown

22. Have you taken any of the following medical therapies since your surgery? Ketoconazole, metyrapone, mitotane, no medical therapies

23. How would you describe your overall recovery experience? Positive, negative, mixed, neutral

24. After your surgery, did you lose weight? Yes, no, unsure

25. Are you now satisfied with your weight? Yes, no, unsure

26. After your surgery, did you suffer from lethargy (lack of energy)? Yes, no, unsure

27. After your surgery, did you suffer from pain in your joints? Yes, no, unsure

28. After your surgery, did you suffer from mental exhaustion? Yes, no, unsure

29. After your surgery, did you suffer from depression? Yes, no, unsure

30. Did you receive sufficient information about the postsurvey recovery experience? Yes, no, unsure

31. Who gave you information about the post-survey recovery experience? Endocrinologist, neurosurgeon, both, neither, other

32. Do you think those close to you were adequately prepared for your postoperative recovery? Yes, no, unsure

33. Would a standardized information sheet about the postsurgical experience from a professional organization of endocrinologists be helpful? Yes, no, unsure

34. Have you returned to work yet? Yes, no, unemployed

35. If yes to question 34, how many months after surgery did you return to work?

36. When you returned to work, did you work full time or part time? Full time, part time, other

37. What did you find helpful in coping with the recovery process? Friends and family, physicians, support groups, physical therapy, exercise, analgesia, antidepressants, massage, entertainment, activities, work, rest, religion, none, other

38. If you consider yourself recovered, how long did your recovery take? Please answer in months.

39. Was or is your recovery time longer than you expected? Yes, no, unknown

40. Do you have any other thoughts that you would like to tell us about your recovery experience after surgical treatment for Cushing syndrome? What could have improved your recovery experience?

For questions with associated drop-down menu options, those options are listed next to the question. All questions had an open-ended option.

ITT, insulin tolerance test.