Patient perspectives on the impact of acromegaly: results from individual and group interviews

Figures & data

Table 1 Patient demographics and treatment history

Category	Results
Age (years), mean ± SD, N=18	41±9
Male/female, N=19	7/12
Most common presenting symptoms,* N=15
Acral changes/change in height	10
Weight gain	5
Headaches	5
Diabetes mellitus	4
Breast discharge	4
Facial changes	4
Joint and/or muscle pain	3
Fatigue	3
Amenorrhea/irregular menstrual cycle	3
Current treatment, N=19
Somatostatin analogs	12 (63%)
GH receptor antagonist	3 (16%)
No medical therapy	4 (21%)
History of treatment since diagnosis,* N=19
One medication	7 (37%)
Two medications	7 (37%)
Three medications	1 (5%)
Four medications	2 (11%)
Surgery	18 (95%)
Radiation	3 (16%)

Note:

* Multiple categories could be selected.

Abbreviations: SD, standard deviation; N, number; GH, growth hormone.

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.

Table 3 Treatment goals shared with health care professionals

Medical treatment goals	How are they achieved?
• Reducing GH and IGF-1 levels to normal – or as close to normal as possible	• Transsphenoidal surgery
	• Medication (if required)
	• Radiation (if required) – most push back against the idea of radiation because of worry about further damage to the pituitary gland, which could necessitate being on hormone replacement for rest of one’s life
• Dealing with any comorbidities that have arisen – high blood pressure, diabetes, weight gain, arthritis, poor vision, pain, sleep apnea, heart condition, jaw/teeth problems, headaches	• Regular blood tests to monitor levels and make certain medications are working
	• Hope/belief that symptoms will disappear or at least be tolerable if they consistently follow the treatment guidelines and protocols

Abbreviations: GH, growth hormone; IGF-1, insulin-like growth factor-1.

Table 4 Lessons in patient empowerment

Themes	Patient quotes
• Acromegaly is a disease or condition in which you are the best judge of what is going on in your body	• “I know my body better than anyone else and I know when it is bad and when it is good … I know so many people with acromegaly that listen to their doctors like they are gods and many of them have no pituitary function but still have acromegaly”
• You can recognize the signs and symptoms before anyone else can, including if your current treatment is not working for whatever reason
• You need to find doctors – endocrinologists, PCPs, neurosurgeons – and all the specialists you might need to help manage your different symptoms/comorbidities – who will partner with you and treat you as a person first and a patient second	• “I have been through a lot physically and emotionally. Acromegaly has taken over and changed my life completely. It has altered my path … thank goodness I found the Acromegaly Community over the Internet. They have been the only true support I get. They are the only ones that understand what I am going through. The fact that I can discuss the strange symptoms and compare notes with others makes a big difference. If you talk about all of this to a friend or family member, it’s not the same. The doctor doesn’t get it either”
• You need to find HCPs who know more than you (if at all possible) – or at least are willing to learn and share their learning and to accept you sharing your learning and intimate knowledge of your body
• You need to be an advocate for yourself to be proactive in your own care	• “I own the car and I’m driving it … the first doctor I saw was more flash and glam … so I got a new endo … she’s only had 3 acro patients … the first endo had so many, but was too busy for me … I am very convincing … I just feel it’s my body…”
• You need to recognize your own need for help and support– you cannot do this alone	• “Since becoming ill, I’ve lost my career, my home, my savings, my husband, my self-worth, and most of all my love for life. I live every day in constant pain and suffer from pounding migraines, back pain, arthritis, nerve pain from fibromyalgia and am never pain-free … for a long time, I was really, really mad about having acromegaly, but now have realized it’s my purpose. It has made me a stronger, wiser, and kinder person … I am one of the faces and voices for acromegaly and have always offered kindness, love, knowledge, experience and support to anyone who is in need … remember, be kinder than necessary, because everyone is fighting some kind of battle”
• You need to learn to accept what has happened, which makes this as much an emotional, psychological, and spiritual journey as a physical journey

Abbreviations: HCPs, health care providers; PCPs, primary care physicians; endo, endocrinologist; acro, acromegaly.

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.

Figure 1 Patient/HCP partnership.

Abbreviation: HCP, health care provider.

Table 6 Patient suggestions to the health care community

Serving patients better	Why? How?
More/better education of HCPs on acromegaly	• Recognize that patients are a resource and can help – (HCPs) “need to be much better educated about acromegaly, not just by the textbooks, but by people with acromegaly”
	• Scheduled events with nurses and doctors where patients speak as well – “a lot of them (nurses, doctors, medical students) have never seen an acro patient up close and my face tells it all”
	• A public education/awareness campaign – “ideally, we should also strive to educate the public so they can ask the right questions of their doctors”
Earlier diagnosis	• Better education of PCPs seen as critical – “Ever since I discovered acromegaly the question that haunted me was why did it take so long to recognize it given the fact that once you know what you are looking at, the information is all over the place. For me it is about educating those who should be in a position to recognize the condition early so more people can be cured and not just treated”
Greater compassion, empathy, and understanding on the part of HCPs	• “I think that doctors and nurses could benefit from reading the posts by the people that are in the support group on Facebook. By hearing what people are going through, they may have more compassion for their patients …. Many of us feel like every day that goes by with acromegaly, we are changing into monsters. That we are losing our identities. Those of us on Facebook feel like we look like each other, as if we are all blood related. It can be a hard thing to accept that we no longer look like our family but like strangers we see on the internet. Our doctors and nurses need more empathy”
	• “Take your time and explain everything to me good or bad thoroughly … assure me that in time we will do our best to manage your acromegaly … always continue to be concerned and always empower yourselves of the different treatments that are available and let your patients know”
Involve PCPs in care plan	• Greater contact between endocrinologists and PCPs – “the endo should not work alone”
Offer counseling for emotional and psychological issues	• “I think a lot of people with acromegaly experience depression and don’t know how to handle it”
	• “Most patients will not speak up or may underestimate how they feel … don’t wait for the patient to express concern”
Inform newly diagnosed patients about the acromegaly community (acromegalycommunity.com)	• “So they don’t walk out not knowing where to go after the news just got dropped on them that they have acro”

Abbreviations: HCPs, health care providers; acro, acromegaly; PCPs, primary care physicians; endo, endocrinologist.