Table 2.
Questions driving the need to know
| What is acromegaly? | • Why am I experiencing all these symptoms? |
| • Why do I feel so bad? | |
| • Why do I no longer look like myself? | |
| • Why does no one seem to know what is going on with me? | |
| Will I ever feel like myself again? As I did before? | • Will the treatments work? |
| • Can my GH and IGF-1 levels get back to normal? | |
| • Will I be cured? Will my symptoms go away? Will the pain stop? | |
| • Why do I have to be compliant? | |
| • What happens if my levels start to rise? What are my options? | |
| • Have other hormones been affected? | |
| • Will I ever look like myself again? Feel energetic? Live a normal life? Have children? Be able to work? Be able to forget, even for a moment, that I have this disease? | |
| What is treatment like/what will I experience? | • Why brain surgery? What will happen? How will I feel? |
| • What are the pros and cons of radiation? Will it just cause more damage? Will I need hormone replacement? Will it work? | |
| • Why do I have to take these medications? | |
| • How can I cope with the side effects? | |
| • How can I cope with the injections? Do I have to have them so often? | |
| • Aren’t there easier solutions – like a once daily pill? Something less intrusive? | |
| How do I survive financially? | • Will my insurance cover me? What happens if I lose my insurance? |
| • Can I afford the co-pays? | |
| • What if I change insurers? |
Abbreviations: GH, growth hormone; IGF-1, insulin-like growth factor-1.