Table 4.

Subthemes with illustrative quotes from the what patients want to know theme

Subtheme	Illustrative quote	Participant & group number
My treatment choices	…it [patient guideline] gives you the knowledge then it gives you the ammunition to question why you’re getting the treatment or why you’re not getting treatment.	P1, G5
Harms and lifestyle	…the doctor wanted to give me an operation…He didn’t tell me about the consequences right of what he was going to do.	P2, G5
What to expect - causes symptoms and outcomes	…we and our families are living with this illness, we should know what to expect…	P2, G2
Self-management	How to help yourself…Help yourself, yes, I think that’s the top priority [for patient guidelines]...	P3, G2
Signposting	Where you should go. It’s not a case of being spoon-fed because we’re all adults but if you’re suffering from this or have the signs of this, this is where you can go for help? We need to know that.	P6, G2