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Box 1 Examples of open-ended questions for semi-structured interviews

From: Barriers to prophylactic treatment among patients with haemophilia A in Shandong Province, China: a qualitative study

1.Would you like to share something about haemophilia A? Your personal story or the story of your kid

2.From the diagnosis to treatment, have you ever felt exhausted because of haemophilia A?

3.What is the most impressive negative experience of you or your kid during the disease journey?

4.According to you, which part(s)of prophylaxis treatment need to be improved?

5.Please sort these phrases in order according to your treatment experience and your wish

(a)health services in enough quantities

(b)health services are of good quality

(c)health services are affordable

(d)health services within safe physical reach

  1. Note: questions in the “Box” were initially asked in Mandarin and translated into English for the convenience of the exhibition
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Orphanet Journal of Rare Diseases

ISSN: 1750-1172