. 2021 Oct 29;35(6):doab073. doi: 10.1093/dote/doab073

Table 4.

View of providers: representative quotations from selected posts

Theme: Views of providers
Providers as unknowledgeable	4A: “I got diagnosed a year and a half ago (I’m 20), and one of the most difficult things about this disease is that a lot of GI doctors will not be super knowledgeable about it”. 4B: “It seems a lot of doctors refuse to believe EoE is a real thing … Even the specialist who diagnosed me admitted he never came across this disease before and didn’t know much about it.” 4C: “This wasn’t even on the doc’s radar initially. He said he’s never actually diagnosed this disease before.” 4D: “I’m 19 and I was diagnosed in May and my first couple months of dealing with this as a student have been really rough too. It can feel very confusing because not every doctor/medical professional you communicate knows the specifics, in fact most don’t.” 4E: “I agree I feel like most doctors don’t really know much about EoE, I hope I’ll have better luck with a different doctor, and now that I know what this ‘disease’ is called… I can maybe give the doctor more insight in some way.”
Providers as unsupportive of patient choices	4F: “I was diagnosed with EoE about 2 years ago... the GI doctor only wanted to treat it with [omeprazole] and had little faith in changing my diet to treat it. I was discouraged and never followed up with the doctor.” 4G: “My doc said I should try elimination but that it usually doesn’t work. I was under the impression it did help people. He said he suspects people have trouble sticking to diet so it ends up not working. He also gave me the steroid to swallow if I want to go that route. I guess I’ll give this diet a go but I need a really great book or recipes cause this sounds like it’ll suck.” 4H: “I was diagnosed with EOE at 17, and now at 25, have never had a good gastroenterologist. When I was diagnosed, at least in my area, knowledge of the condition was relatively new, so I went to two different GIs initially, neither of which was very helpful (one prescribed oral steroid pills which I could barely swallow, and the other lacked empathy and was only interested in an endoscopy twice a year).” 4I: “If your doctor is unsupportive and wishes to only medicate without lifestyle change, I would consider finding a new doctor whose values align with yours.”

Theme: Views of providers

Providers as unknowledgeable

4A: “I got diagnosed a year and a half ago (I’m 20), and one of the most difficult things about this disease is that a lot of GI doctors will not be super knowledgeable about it”.
4B: “It seems a lot of doctors refuse to believe EoE is a real thing … Even the specialist who diagnosed me admitted he never came across this disease before and didn’t know much about it.”
4C: “This wasn’t even on the doc’s radar initially. He said he’s never actually diagnosed this disease before.”
4D: “I’m 19 and I was diagnosed in May and my first couple months of dealing with this as a student have been really rough too. It can feel very confusing because not every doctor/medical professional you communicate knows the specifics, in fact most don’t.”
4E: “I agree I feel like most doctors don’t really know much about EoE, I hope I’ll have better luck with a different doctor, and now that I know what this ‘disease’ is called… I can maybe give the doctor more insight in some way.”

Providers as unsupportive of patient choices

4F: “I was diagnosed with EoE about 2 years ago... the GI doctor only wanted to treat it with [omeprazole] and had little faith in changing my diet to treat it. I was discouraged and never followed up with the doctor.”
4G: “My doc said I should try elimination but that it usually doesn’t work. I was under the impression it did help people. He said he suspects people have trouble sticking to diet so it ends up not working. He also gave me the steroid to swallow if I want to go that route. I guess I’ll give this diet a go but I need a really great book or recipes cause this sounds like it’ll suck.”
4H: “I was diagnosed with EOE at 17, and now at 25, have never had a good gastroenterologist. When I was diagnosed, at least in my area, knowledge of the condition was relatively new, so I went to two different GIs initially, neither of which was very helpful (one prescribed oral steroid pills which I could barely swallow, and the other lacked empathy and was only interested in an endoscopy twice a year).”
4I: “If your doctor is unsupportive and wishes to only medicate without lifestyle change, I would consider finding a new doctor whose values align with yours.”