Table 5.

Patient concerns mentioned in the final open-ended question of the phase 2 patient survey

Patient concern (N = 280)	% (n)	95% CI	Sample quotations
Felt unprepared for recovery and/or wanted more information on recovery	32.9 (92)	27.6– 38.6	“[I needed] better aftercare.”
			“I wish someone would have told me . . . what I would be experiencing after surgery.”
			“Information on how to recognize adrenal insufficiency/crisis would have been helpful.”
			“I am ‘in the dark’ as to what’s going on . . . at this point.”
			“Recovery from having Cushing’s has been really rough for me and my family. We had no idea what to expect, or how long it would take.”
			“A list of more critical symptoms in which we should call the doctor would have been great to avoid all of the nagging unsure phone calls in which we have to hear, ‘oh don’t worry, that’s normal.’”
Providers were not familiar enough with CS or provided inaccurate information	16.1 (45)	12.2–20.8	“I needed one single doctor who knew Cushing’s but could also act like a primary care [provider] while my body resolved multiple problems. My Cushing’s doctor wasn’t interested in helping me through the little stuff, and my primary care [provider] didn’t know anything about Cushing’s recovery.”
			“I am shocked that most medical professionals are NOT FAMILIAR with Cushing’s syndrome or its recovery.”
			“I just wish physicians were more familiar with Cushing’s. It is so frustrating . . . [and] adds to the mental exhaustion of trying to fight off this debilitating disease.”
			“I wish my endocrinologist had prepared me for what to expect in recovery . . . She said I would be able to return to work 2-3 weeks after surgery. It took me 3 months before I could return to work.”
Difficulty with weight loss/persistent body image issues	14.3 (40)	10.7–18.9	“I’m upset that I’ve put weight on and wish I could have liposuction . . . ”
			“I lost some weight after the surgery, but never ever came close to coming near what I weighed before the surgery.”
			“The weight gain makes me feel horrible about how I look. My husband left after the surgery as he said he could not take the weight gain.”
			“I had a big problem with my body image after I lost weight after recovering. I still don’t feel very comfortable with my body.”
Found/believed they would have found a support group beneficial to their recovery	12.1 (34)	8.8–16.5	“Peer support regarding the range of recovery experiences . . . was something that I should have sought out earlier.”
			“I would have greatly benefited from a Cushing’s support group.”
			“Talking/reading up on people with the actual syndrome and how they handled [recovery] would have helped me out a lot more than going into the recovery process ‘blind.’”
			“I would encourage endocrinologists [to provide patients] with information on local or virtual support groups that deal with Cushing’s recovery.”
			“I started a blog and a support group for patients in the early diagnosis and recovery of Cushing’s. This allowed me to connect with others who were going through the same things I was and saved my sanity, knowing that I wasn’t alone.”
Recovery was longer than expected	7.5 (21)	5.0–11.2	“I think knowing how long the process could take . . . would have better prepared me.”
			“I thought I would undergo surgery and walk out of the hospital well. Two years later I’m still not completely back.”
			“A more realistic time frame for recovery [would have helped] . . . I expected a quick recovery.”
			“It really needs to be stressed to patients that it will take a really long time to get better.”
Wanted more information on recovery for family members/felt misunderstood by family	3.9 (11)	2.2–6.9	“Family members and patients need a more thorough education about the disease and symptoms as many of us spent years thinking it was our fault and something was wrong.”
			“Formal information about recovery from the doctor to patient and his/her family member probably [would] help a lot.”
			“I was not warned of all the physical things I would be going through (for example, joint pain, depression, physical exhaustion) so my family just thought I was crazy.”
Experienced musculoskeletal pain	18.6 (52)	14.5–23.5	“I had so much joint and muscle pain I could hardly move.”
			“I am very sore all of the time.”
			“My shoulders froze, my knees gave out.”
			“I never, never imagined I would go through such excruciating pain in the joints and muscles!”
Experienced fatigue	16.1 (45)	12.2–20.8	“The worst part of recovery is the physical fatigue.”
			“Not having energy to do things I expected to be able to do was very disappointing.”
			“[One of the] hardest parts of recovery for me was the lack of energy.”
			“I am still very tired.”
Experienced depression	11.1 (31)	7.9–15.3	“I felt ill-prepared for the severe depression I experienced.”
			“I did go to talk therapy on my own, but that should have been required by the endocrine team [as I had] many issues with depressive thoughts.”
			“I think an antidepressant should have been prescribed upon diagnosis of Cushing’s and sustained through recovery. My depression was debilitating, but avoidable.”

Abbreviation: CS, Cushing syndrome.