Table 2.
Questions included in the interview guide
| Topic | Main questions and probes |
|---|---|
| Introduction |
First of all, could you tell me a bit about yourself? Probes: • How many adult patients with aHUS do you typically treat in a year? • What are the main challenges in treating these patients? • How are treatment decisions typically made in your department? |
| Management of ‘straightforward’ cases |
If I asked you to give me an example of a ‘straightforward’ case that you treated recently, how would this look like? Probes: • What made this case straightforward? • How long was the patient left on treatment? • How often do you have cases like this? • Is this how you typically manage such cases? |
| Management of ‘challenging’ cases |
Looking back to your career so far, what would you say was the most ‘challenging’ case of an aHUS patient that you have treated? Probes: • What made it so challenging? • How long was the patient left on treatment? • How often do you have cases like this? • Is this how you typically manage such cases? |
| Treatment monitoring and management of relapse |
Could you tell me a bit about the monitoring process and your approach to the management of relapse? Probes: • How often do you monitor the patient during treatment? And after discontinuing treatment? • How common is it for a patient to relapse after treatment discontinuation and what do you do in such a case? • Based on your experience, what are common risk factors influencing relapse rates? What are common relapse consequences? |
| Considerations guiding treatment discontinuation decisions |
In general, what factors do you take into account when deciding to discontinue treatment? Probes: • If I asked you to rank all the factors that you’ve mentioned in terms of importance, would you be able to do so? • Are there any non-clinical factors that you typically consider? • Is mutational analysis readily available to you? How long does it take to get the results? How heavily do the results weigh on a treatment duration decision? • What kind of tools or types of evidence do you consider when deciding to discontinue treatment? • How do patients typically react when hearing about the discontinuation of their treatment? |
| Wrap-up |
[Interviewer provides a brief summary of the discussion and asks for verification] Is there anything else that you feel is important to mention? |