Table 1.

Disease knowledge and patient perception

Emerging pattern	Patient quotes
Lack of awareness	“I have lived with it all my life, I can manage it.” (UK patient, fibrosis stage F1) “I often do not even think about it as I do not believe I have symptoms related to it […] I think of a disease as something more serious.” (UK patient, fibrosis stage F1) “Many have it and do not even notice.” (UK patient)
Uncertainty	“I am always worried about my long-term health […] the future is uncertain and I think the condition will cut my life short.” (US patient, fibrosis stage F2) “Sometimes can’t sleep as worried about my future health.” (UK patient) “I certainly do not know if there is anything I should be doing right now and if I am in any danger health wise at present due to this condition.” (UK patient)
Fear	“I wonder if I need a transplant one day. That scares me.” (US patient, fibrosis stage F2) “The imminent progression of it to permanent liver damage petrifies me.” (US patient, fibrosis stage F3) “Biopsy, appointments, hospitals, feeling scared.” (UK patient) “I guess the biggest challenge is always having in the back of my mind that my condition can worsen. That my liver might eventually be the cause of my death.” (US patient)
Guilt	“The idea that I caused it myself is very sobering, it creeps up on you.” (UK patient) “I have never been a drinker, it’s amazing I should have a liver condition […] I feel sorry for myself.” (UK patient)
Lifestyle-related	“Can be reversed by healthy lifestyle.” (UK patient, fibrosis stage F1)

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