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Table 1 Semi-structured interview guide

From: Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

SetPrincipal questions
Experiences with the disease (from patients who consciously experienced their diagnosis)Please remember the beginning of your disease. What changes did you notice?
How did diagnosis proceed?
What happened after diagnosis?
When imagining yourself in that position again, how did you feel?
Experiences with the disease (from patients who did not consciously experience their diagnosis)Please tell me about your disease and how life has changed due to it.
How does your disease affect your everyday life?
Some people want to learn more about the diseases that they live with. How about you?
Information seeking and information needsHow was that, striving to find information about your disease?
Do you remember any events that you associate with increased demand for information?
Please tell me about situations in which it was easy to gather information.
Please tell me about situations in which it was difficult to gather information.
Which moments do you consider important in searching for information?
Type of accessPlease imagine the many possibilities of modern and classic media to communicate. Please recall your own situation. Which media did you use when searching for information?
Which medium would you prefer for accessing information?
CompletionAre there any other topics that you would like to talk about?