Table 5.

Best patient resources

Best resource	Why?
An endocrinologist who cares, is knowledgeable, informed, up to date, proactive, and positive	• All of which “can make this a very manageable disease”
	• “My most important resource is my endocrinologist … He has helped me through some very difficult times”
	• “I would say that my local endo is my best resource for my management. We have a very open dialogue and I can email him at any time. He keeps up with the newest guidelines and does his best to help me”
Acromegaly specialist or team	• Only one or two seemed to be in this position, but best practice as a patient is still to “follow up with your neuro/endo, radiation/oncologist, make sure your primary doctor is aware of everything you’re being treated for … and do your own research”
Internet – but can be a double-edged sword	• Positive – in the context of a good relationship with an endocrinologist, but not as a substitute for it – “I wouldn’t know nearly what I know today without the internet. I was able to get actual medical articles to show my Dr … That took so much weight off my shoulders”
	• Problematic – if you don’t have an endocrinologist you can trust, then “you don’t know who you can believe;” and “all sites say the same things”
Patient sites like acromegalycommunity.com	• “It’s been a godsend … it is such a rare condition and hardly anyone understands unless they have it … I am looking to going to Vegas and see my acro family again”
	• “It’s been so great to talk with other people who know how I am feeling”
	• “My online support group is by far the most important resource right now. Listening to what other patients are being told by their specialists is how I am learning more”

Abbreviations: acro, acromegaly; endo, endocrinologist; neuro, neurosurgeon.