Table 1.

Question guide for semi-structured interviews

Question guide for semi-structured interviews

What do you know about MFS?

How did you gather this information?

Which features of MFS do you have yourself?

What is the impact of MFS on your activities? What is the impact of MFS on your participation in daily life?

What are your concerns about your daily life (related to MFS)?

How do you manage and cope with your limitations, restrictions and concerns (related to MFS)? What kind of physical or emotional support do you get and what helps you to participate in daily life?

Who and how did you tell about MFS?

What is the attitude of peers and other people towards your disease?

What is the impact of MFS on your family life?

Have you thoughts about your future adult life (work, relationships, family life, health, leisure)?

Which supplementary (medical) support do you need and what is your advice to optimise adolescent MFS care?