Table 3.

Emerging Concepts from Patient Focus Groups

Themes by Patients	Concepts	Representative quotes
Embarrassment Worry Ability to do things you enjoy Smell Effect on Lifestyle	LIVE	“There are many people who get really down and depressed about this condition… and you have to continue to be optimistic and live your life.” “Just-in-case pants are a must.”
Wanting to be/feel healthy	HOPE	“But I think not talking about these things like hope is a mistake. I think we need to have hope and happiness to know that there is a positive outcome possible for us.” “Emotions are important to include… because we have something going on in our bodies that we feel like we have no control over.”
Will to get better Desire to get better No treatment recommendations from physicians	EFFORT	“You’re not in contact with your doctor daily, but you’re in contact with yourself… so I’m responsible for getting better.” “You put energy into the process of healing.”