Table 2.

Focus Group Topic Guide

Topic	Questions and prompts
Feelings about acute porphyria	When you received the diagnosis of acute porphyria, how did you feel? How do you feel about your porphyria now?
Prodromal symptoms	To what extent can you tell when an acute attack is coming on, before the acute abdominal pain starts? How do you know? What does it physically feel like? Are there any signs your friends or family members recognize in you before an attack Has anyone ever had pre-attack symptoms without an attack actually following
Medical treatment	Generally, when do you go to the hospital or seek treatment? Can you tell us more about what things affect your decision to go at that particular time
Stress	We know there can be a number of things that can precipitate an attack. Does anybody feel that stress in their personal life has caused them to have an attack? Can someone give an example of the type of stress that affects their porphyria attacks How do you manage stress in daily life?
Pain management	As you manage your porphyria pain, have you found any treatments that relieve the pain you feel? Does anyone think that one of these treatments could ever prevent an acute attack? Has anyone avoided an attack by using one of these treatments?